Wednesday, December 1, 2010
Monday, November 29, 2010
THE AGGREGATE EXPERIENCE - 11-23-10
EXTRA!
____________________
EVENING EDITION
_________________________________________
"THE AGGREGATE EXPERIENCE"
11-23-10
(12TH MONTH ANNIVERSARY
COUNTDOWN!)
“FORREST, I’LL BE HOME IN about A WEEK!”
(OR SO I THOUGHT!)
I uttered those words to Forrest as he was leaving the Intensive Care Unit sometime during the week of December 8, 2009, just a couple of weeks after Thanksgiving. HAH! Not understanding the extent of my infliction I was already planning out my week once I got home. I truly didn’t think I’d be sitting here almost one year later with only four of my ten fingers working, unable to stand from a low seated position, unable to stand without holding on to something for more than a handful of seconds and only able to walk with the assistance of a walker.
Thanksgiving 2010, is just a couple of days away. Before last year Thanksgiving ushered in great feelings of joy and excitement as it symbolized the beginning of the holiday season. I love the pomp and circumstance surrounding the holidays; the malls, shopping, the weather, the lights, the colors, Christmas music, Christmas movies such as “It’s a Wonderful Life and “White Christmas”, decorating and the palatable feel of goodwill from all those you meet.
This time around, however, there is a distinct feeling of dread and a need to avoid the whole day as the sequence of events involving Thanksgiving are too close in time to the onset of GBS to disassociate it from what would become my living hell.
Thanksgiving Day 2009, was unremarkable as days go. I got up and watched the Thanksgiving Day Macys Parade as I’ve done my whole life. I fiddled about the house and soon began to get ready for the long haul down to my aunt’s home in Palm Springs where most of the family was scheduled to gather for dinner. I primarily went down there to see my ailing 96 year old grandfather.
After dinner was over Forrest and I left, it was somewhat early because many of the family failed to show up. I took leftovers home because there was no one there to eat the food.
For the next couple of days, it seemed that turkey and stuffing were the only things I ate.
On the following Monday I realized I had a bad stomach virus, didn’t think much of it. Five or six days later it seemed to die down in intensity. On the following Monday, December 7, I awoke with a sore back. I discounted it as nothing more than sleeping in a wrong position. On Tuesday, December 8, I awoke with noticeable weakness in my feet and the rest is history.
The point is the classic condition precedent to GBS is a virus attack which jumpstarts the body’s anti-bodies. Something had to trigger my immune system before it went “Postal” on my motor nerve network. (It’s interesting how my sensory network was left intact). Now I don’t know if Thanksgiving leftovers or some other food item gave me the stomach virus. I do know this, however, the cycle of food digestion suggests if it were food, it was something I ate close in time to the onset of the gastro problem. The only thing I was eating over the two days prior to the attack was leftovers.
Now you understand my apprehension towards this wonderful holiday.
HERE I AM. HERE I SIT
Other than the bountiful meal served at Thanksgiving, the holiday serves notice to give thanks for what we have. It’s easy to forget the sanctity of one’s life and the precarious hold we have on health and happiness. In some respects, I feel grateful to have so much taken from me for what is left is who I am as a person; a human being; a man. In essence I have been stripped down to my core, physically, mentally and emotionally.
I can no longer begrudge the person who views life from a different perspective after almost dying or after surviving a horrific event. I have come as close to death as I’d like to for the next fifty years. The next time the curtain calls I think I may have to take it. My life has changed; this I cannot argue. I have much to be thankful for because I am here, I can think, I can stand, I can sit, and although I can’t walk like I use to, I can try. As the 17th Century French philosopher Rene Descartes, the “Father of Modern Philosophy”, wrote: "Cogito ergo sum" (French: Je pense, donc je suis; English: I think, therefore I am; or I am thinking, therefore I exist or I do think, therefore I do exist). You get the point. For that I am grateful and thankful.
WEIGHT
I am down to 169.4 lbs., almost breaching the 168 mark. I have lost almost 135 lbs. It’s amazing, although I no longer exercise five hours a day I am still able to lose weight, albeit slowly. I can only look to my continued and unwavering strict adherence to the diet for the continued weight loss. It’s funny to see the waitresses at Bucas when I order salad and not a pasta plate.
I have decided to proceed on to my secondary goal of 155 lbs. making my total weight loss at 148 lbs. WOW! The continued loss can only make standing that much easier and therefore essential at this point to my recovery.
WALKING
Over the past couple of weeks I have been walking extensively, sometimes for several hours at any one time. The other day I took the subway with Maggie which I think aged me ten years; not Maggie but the train. Walking down the hallway in your home from the bedroom to the kitchen seems at first a nice walk. Well, try walking the length of a subway platform. You quickly recognize the need for a longer hallway. If that weren’t enough, try standing next to a five car train as it thunders into the station like a plunger in a tube pushing before it compressed air with nowhere to go but through your weakened body as if it wants to knock you over. In a taunting fashion the train stopped, luring me in the quickly opening doors. Well the doors close just as quickly. For me that’s a big problem. I then noticed a gap between the platform and the train. What would happen if my walker or polio shoe got stuck in the gap? To make matters worse the floor of the car was higher than the platform. I had to negotiate all of this in a matter of two seconds. There was no second chance.
Without thinking more about it I launched myself into the car hoping the closing doors wouldn’t nab my foot as it lumbered in behind me. I fully concentrated on the placement of my foot not knowing if I could make the step onto the train floor and hoping my knee wouldn’t buckle. Well I made it. I maneuvered to the side bar and railing trying to find a secured spot. The wheels of my walker were facing the back of the train. My relief would be short-lived. In the back of my mind I heard the faint transmission of the conductor warning the doors’ closing; for a brief moment the train lurched forward, trying to break free of the restraining brake. I knew then I was about to fall. The wheels of the walker were pointed in the opposite direction of the car’s movement so when the train moved forward the walker moved backward. Shit! My heart sank passing my stomach as it ascended into my throat. I simply didn’t have the strength to counter the walker’s movement and my hands were too weak to grab and hold onto the bar. Seeing the walker move independent of me Maggie grabbed it halting what was to be my ass on the floor.
Like a ride which won’t stop, the train barreled towards its next destination uncaring of my plight. I didn’t want to move knowing my knees would fail at the slightest jolt. Maggie embraced me and the walker forcing me into the corner where I wouldn’t fall. Jesus Christ! I’ve been riding subways and trains virtually my whole life; from New York to Washington to San Francisco, this was the first time I felt scared of the train.
My immediate thought was the reduction of speed as the train approached the next station. I told Maggie to prepare for a quick deceleration. I imagined my body being pushed by the sheer physics of the stop unable to do anything but “go with the flow.”
The train was traveling beyond fast to its next stop. I half expected to see through the large window the reflective bright glare from the sparks angling off the steel wheels as they screamed over the iron rails. Unable to firmly grab the bar with my hand I wrapped my arm around it placing it in the fold of my elbow. We waited.
Unable to find a job as a real motorman in New York, the driver was hired here to operate this speeding bullet; second rate. The recorded voice of the conductor again pierced the shrill of the train’s passage advising all of the quickly approaching station. I tensed and could feel Maggie’s grip tightened about me as we prepared for another fall. After several unnecessary jerks and restarts the train came to a rocking halt. Maggie and I heaved back and forth with each jerk of the 30 ton train. I was expecting to see the floor at any time. Once stopped we looked at each other relieved we were still standing. I sat down. It was easier that way and I didn’t want to take the chance of falling. I’m funny that way.
The fun wasn’t over yet, however. There was still the issue of getting up off the seat and getting out of the train within the handful of seconds allowed before the doors shut off any exit. We counted the seconds the doors remained opened, twelve. The doors stayed open for only twelve seconds! Seems like an eternity but when it takes an hour and a half to walk a half mile, twelve seconds seems like a blink of an eye. I decided to get prepared at the stop right before our station. We had to wait for the train to come to a complete halt before Maggie could hoist me up and then I had to maneuver to a spot where I could secure myself; once the doors opened I had to negotiate the gap between the train and the platform as well as the step down. What a pain in the ass.
We did it and we laughed because there was nothing else to do. The alternative wasn’t acceptable. The next time will be easier if for no other reason but because we know what to expect.
My hope is to be able to take the train in anticipation of working downtown.
PATIENT ADVISORY BOARD
We had our meeting two weeks ago where I was voted by the board to act as co-chairman of the committee. We had a very productive meeting where several ideas were discussed to enhance the patient experience and provide better quality of care.
SIT TO STAND
I have hit 23 ½ inches. If you recall when I left the Ranch on September 8, I was only able to stand up from as low as 27 inches. I am getting closer to the 19 inch goal.
HAVE A GREAT AND HAPPY THANKSGIVING. As always, remember “It could be worse and there is always tomorrow!”
TAKE CARE.
Thursday, November 11, 2010
Wednesday, November 10, 2010
THE AGGREGATE EXPERIENCE - 11-08-10 11TH MONTH ANNIVERSARY!
EXTRA!
____________________
EVENING EDITION
________________________________________________
"THE AGGREGATE EXPERIENCE"
11-08-10
(11TH MONTH ANNIVERSARY)
QUICK UPDATE!
(OR SO I THOUGHT!)
As I listen and dance in my chair to wildly funky “Dance to the Music” and “Going to Take You Higher” and other great tunes by Sly and The Family Stone and Graham Central Station I figured I’d take advantage of my state of mind and give an update on my weight loss and a few other incidentals involving my reentry back into “normalcy.”
IVIG TREATMENTS (THE BANDWAGON)
In somewhat disturbing contrast to the early position taken by the medical staff at the Ranch, regular administration of the IVIG treatments has now become standard operating procedure. It’s disturbing because it wasn’t too long ago when the medical staff outright refused to administer the medication despite the obvious absence of any objectively identifiable improvement in my condition.
I received the initial dose of the IVIG while in the Intensive Care Unit in early December. Astonishing as it may sound, when I asked the treating physician how the medication worked, he looked at me with an embarrassed dread in his eye and meekly replied, “I don’t know.” What? The drug induced fog which I was happy to be in, was suddenly blown clear and if I could have, I would have grabbed him by the overly starched collar of his oversized white medical jacket and screamed into his face only inches from my nose, “ARE YOU F!@#$%G OUT OF YOUR MIND!!?” “WHAT DO YOU MEAN; YOU ARE ADMINISTERING A DEADLY SERUM WHICH CAN KILL ME ON THE PRETEXT IT IS GOING TO HELP, AND YOU DON’T KNOW HOW IT WORKS!” Did I hear him correctly? Did I lose my brain in addition to being paralyzed?
As it happened, I couldn’t move my arms and my diaphragm was significantly compromised so yelling was out of the question. All I could muster was a nominally audible pleading “why don’t you know?” Aren’t doctors supposed to know everything? Where was Marcus Welby when you needed him? (For the young and unknowing reader Marcus was a TV doctor from 1969-1976.)
The doctor’s response was medical double speak. What he should have said was given the rarity of the syndrome sufficient research dollars just weren’t allocated. This lack of research left a want of understanding about the effects of IVIG, how it works, whether it works and an effective treatment regimen. The available research out there was also dated, incomplete and wholly ineffective given its erroneous predicate. Consequently, persons afflicted with the mysterious GBS were left to the whims and personal understanding of the treating physician; some patients were treated while others were simply abandoned medically and shipped to nursing homes to live out the rest of their miserable lives prisoners of their own body.
I was to be shipped out 28 days after I arrived while still a quadriplegic. We already know that story. Needless to say, I convinced them the path they were about to take was the wrong course and full of legal landmines.
Five months later I was working my ass off day after day with no significant improvement save impressive and continuous weight loss. I had little of any arm movement and required assistance from eating to brushing my teeth. By this point the doctors who first thought me dead had the “I told you so” attitude, and therefore we’re not going to do anything more for me because I was not improving. On the other hand certain individuals were professionally concerned with my lack of improvement given the amount of effort I was putting into my recovery on a daily basis. One person was P.A. Sally Davis.
Sally is a Physician’s Assistant in the 903 unit to which I was transferred in mid February. I wasn’t getting anywhere with the doctor in my old unit at JPI; now was a chance to speak to a new ear. I needed first to show her, however, I was real and prepared to do whatever it took to recover. Over the next couple of months I picked up my pace and increased my work-out regimen. I needed a partner and she fit the bill. She was smarter than most of the doctors I spoke with and she was empathic to my needs and genuinely concerned with my welfare. It helped she was from New York; no bullshit approach to medicine. I had a no bullshit approach to my recovery. I had an idea of what I needed to do, I feverishly worked towards that goal and she saw it. We clicked.
The time had come to campaign for another round of the IVIG. Nothing else seemed to be working and I was getting desperate and fighting bouts of depression. Sally had personally seen me work my ass off yet my improvement was nominal. There had to be an alternative so I spoke with her about another dose of the Jim Jones juice. Much to my surprise she agreed without much remonstration from me. She would later tell me she felt it necessary to “put all the chips in” given my forceful approach to my recovery. “If you were willing to put all of your chips into your recovery Rancho needed to do the same!” “When you have a patient willing to go the extra mile towards in pursuit of his recovery, the hospital has to match his bet and partner up. Chip for chip!”
The gears were now in motion. Sally began coordinating with the neurologist and the unit where the IVIG would be administered, 902. Everything seemed to be going forward until I spoke with the attending physician on the unit. Without mincing words he flat out told me that he had to first think about it given the medication cost and the need to have nurses available; in other words, no.
Well I immediately began to argue my case to anyone who would listen, “It will cost more to do nothing!” I contacted the Patient Advocate as well as Sally urging swift action towards the administration of the IVIG because the benefits substantially outweighed the costs. After meeting with the neurologist, he agreed with me and submitted his recommendation. The one misguided doctor was still the lone holdout. As luck would have it, another doctor came to the unit on rotation. He was the very same doctor who told me he didn’t know how the medication worked, just that it worked. (This doctor later told me months later he wrote me off. He said my condition was so acute he felt I’d never move again. I got that often. HAH!). Sally convinced him to agree to the medication. It was now the late May. For almost six months I didn’t receive any medication. The lapse in treatment sort of begs the question, doesn’t it?
At the time I received the second dose I had slight movement in my left arm and shoulder, I could barely lift my hand above my shoulder and only for a couple of seconds. My right arm was unable to move at the bicep and the arm could only be lifted just below the shoulder. My legs were still totally unable to hold up my weight; I was only able to stand with a brace wrapped around my bottom while holding onto a tall table, like a TV tray. It was now the beginning of June.
Over the next several weeks my improvement went beyond the anecdotal to being objectively measurable if only because it seemed to break the flat line measurement of previous weeks. My strength was increasing, my endurance was establishing new benchmarks with each try and range of motion seemed to increase. Two to three weeks after the serum I drove by the “write off” doctor who asked how I was doing. Almost automatically I raised my right arm way above my shoulder like I was hailing a New York cab, and said “GREAT!” Yes, I was trying to illicit a response of surprise; if I were counting on another treatment people needed to see marked improvement. If I had to dive off a ten meter high board I would have done it!
My demonstration worked. I was soon scheduled for another round of the medication.
On June 29, 2010, I took my first steps. During the preceding six months I was unable to stand on my own. Within twenty odd days of receiving the IVIG I was not only standing but I was also walking!
Since the second round I’ve had two more treatments at Rancho and two treatments at home with ten more treatments scheduled over as many months. Wow! Is that a change in treatment philosophy? The change of position with regard to treating me came about because of the perceived correlation between my recovery and the IVIG. As noted, my progression over the preceding six months was remarkable only because nothing was happening save significant weight loss. Once the IVIG was administered I broke through the proverbial glass ceiling where my progression curve began to ascend at a greater rate.
During a painful nerve conduction examination at USC I met up again with the original doctor who saw me in December and later ok’d the second IVIG treatment. He flat out stated that there is a big question of whether I would have recovered sooner had I been given the IVIG treatment early on instead of waiting for six months. I felt sick. In almost in the same breath he lauded the effects of the medication and seemed newly converted to its still unknown impact on the syndrome. I felt sicker. Where was his endorsement six months ago.
As P.A. Sally later said to me; as a direct result of my reaction to the IVIG I have re-written the way Rancho and the County of Los Angeles treats its GBS patients. Prior to my admission a GBS patient would be given one treatment during the initial intake and left to recover either at home or at a nursing facility. In either instance, recovery would be long in coming if it even happened. Now, GBS patients will be aggressively treated with IVIG with the goal of recovery. Only time will tell whether this change in philosophy will last beyond the immediate future. I’ll never forget the discussion I had with the doctor within weeks of my arrival at Rancho which centered on the need for additional IVIG treatments as well as extensive and vigorous physical therapy. The only thing the doctor could state was that I was “arguing against the paradigm of science.” I told him he didn’t know what the paradigm of science was because their position was predicated on an erroneous premise; therefore, any conclusion had to likewise be erroneous. Moreover, all medical papers dealing with the diagnosis and treatment of GBS were about 40 years old. For God’s sake, they didn’t know how the medication worked, or even if it worked. I then told him I would rewrite the literature, “follow me and Rancho will create a new paradigm of science!” I doubt the doctor still feels comfortable with his “paradigm.
After the third administration of the IVIG I bumped into the doctor who initially refused the IVIG. Well, he saw me walking. His eyes told me he was quite surprised. I called him over and asked him if my improvement was the result of the IVIG to which he profoundly responded, “I don’t know.” That was a comforting exchange.
Yesterday, I finished the second treatment at home without any major problems. The nurse does have a difficult time, however, at finding a workable vein. After the five day session my arms are covered with black and blue blotches from where she stuck me. It usually takes five or six tries before a vein is found.
WEIGHT
Understandably, weight loss has slowed if for no other reason than because I don’t have that much weight to lose. Additionally, I am gaining strength which necessarily means I’m building muscle, for example, my right bicep which has not worked at all has now fully come back into action with complete range of motion. Not only can I now bend it at the elbow but I can also support weight with it, a couple of lbs. Increased strength translates into increased muscle fiber which has more mass than fat.
Nevertheless, I dropped another pound to 170 lbs. for a total loss of 133 lbs. in ten months. I’m five pounds away from my original goal of 165 and only fifteen pounds away from my revised goal of 155 lbs. Who knows, maybe I’ll try 145 lbs. Keep in mind, the lighter I weigh the easier it is to get about. That is my primary goal. As I get stronger I will worry about gaining some weight back, but until then continued weight loss is the stated goal. Although my skin is re-absorbing I probably have at least about 10 lbs of it hanging around. Who has the knife?
PATIENT ADVISORY BOARD
One of the items of interest stemming from my determined advocacy is the seat on the Patient Advisory Committee. Our second meeting is scheduled for this Friday where we will earnestly begin developing new ways to bring the patient into partnership with the doctor to actively help in the coordination of his/her care.
Hospitals around the country are preparing for the changes brought about by the health care reform bill which, among other things, will affect how a hospital is paid by the government. If the hospital does not achieve certain benchmark scores, insurance payments will be reduced on the simple theory that if the hospital isn’t performing then it shouldn’t receive the same payments as hospitals which are reaching the threshold levels. Consequently, the hospital needs to sell itself.
I am asking everyone for your help. I’m sure many of you have had experiences with hospitals involving yourself, a friend or a loved one. If there was something which you felt could have been addressed which would have made the hospital stay a better experience let me know. I will then review your idea and see if it could be applied to Rancho, if it could I’ll submit the concept for discussion. So please, seriously think about it and get back to me with your ideas or thoughts.
As always, remember “It could be worse and there is always tomorrow!”
TAKE CARE.
____________________
EVENING EDITION
________________________________________________
"THE AGGREGATE EXPERIENCE"
11-08-10
(11TH MONTH ANNIVERSARY)
QUICK UPDATE!
(OR SO I THOUGHT!)
As I listen and dance in my chair to wildly funky “Dance to the Music” and “Going to Take You Higher” and other great tunes by Sly and The Family Stone and Graham Central Station I figured I’d take advantage of my state of mind and give an update on my weight loss and a few other incidentals involving my reentry back into “normalcy.”
IVIG TREATMENTS (THE BANDWAGON)
In somewhat disturbing contrast to the early position taken by the medical staff at the Ranch, regular administration of the IVIG treatments has now become standard operating procedure. It’s disturbing because it wasn’t too long ago when the medical staff outright refused to administer the medication despite the obvious absence of any objectively identifiable improvement in my condition.
I received the initial dose of the IVIG while in the Intensive Care Unit in early December. Astonishing as it may sound, when I asked the treating physician how the medication worked, he looked at me with an embarrassed dread in his eye and meekly replied, “I don’t know.” What? The drug induced fog which I was happy to be in, was suddenly blown clear and if I could have, I would have grabbed him by the overly starched collar of his oversized white medical jacket and screamed into his face only inches from my nose, “ARE YOU F!@#$%G OUT OF YOUR MIND!!?” “WHAT DO YOU MEAN; YOU ARE ADMINISTERING A DEADLY SERUM WHICH CAN KILL ME ON THE PRETEXT IT IS GOING TO HELP, AND YOU DON’T KNOW HOW IT WORKS!” Did I hear him correctly? Did I lose my brain in addition to being paralyzed?
As it happened, I couldn’t move my arms and my diaphragm was significantly compromised so yelling was out of the question. All I could muster was a nominally audible pleading “why don’t you know?” Aren’t doctors supposed to know everything? Where was Marcus Welby when you needed him? (For the young and unknowing reader Marcus was a TV doctor from 1969-1976.)
The doctor’s response was medical double speak. What he should have said was given the rarity of the syndrome sufficient research dollars just weren’t allocated. This lack of research left a want of understanding about the effects of IVIG, how it works, whether it works and an effective treatment regimen. The available research out there was also dated, incomplete and wholly ineffective given its erroneous predicate. Consequently, persons afflicted with the mysterious GBS were left to the whims and personal understanding of the treating physician; some patients were treated while others were simply abandoned medically and shipped to nursing homes to live out the rest of their miserable lives prisoners of their own body.
I was to be shipped out 28 days after I arrived while still a quadriplegic. We already know that story. Needless to say, I convinced them the path they were about to take was the wrong course and full of legal landmines.
Five months later I was working my ass off day after day with no significant improvement save impressive and continuous weight loss. I had little of any arm movement and required assistance from eating to brushing my teeth. By this point the doctors who first thought me dead had the “I told you so” attitude, and therefore we’re not going to do anything more for me because I was not improving. On the other hand certain individuals were professionally concerned with my lack of improvement given the amount of effort I was putting into my recovery on a daily basis. One person was P.A. Sally Davis.
Sally is a Physician’s Assistant in the 903 unit to which I was transferred in mid February. I wasn’t getting anywhere with the doctor in my old unit at JPI; now was a chance to speak to a new ear. I needed first to show her, however, I was real and prepared to do whatever it took to recover. Over the next couple of months I picked up my pace and increased my work-out regimen. I needed a partner and she fit the bill. She was smarter than most of the doctors I spoke with and she was empathic to my needs and genuinely concerned with my welfare. It helped she was from New York; no bullshit approach to medicine. I had a no bullshit approach to my recovery. I had an idea of what I needed to do, I feverishly worked towards that goal and she saw it. We clicked.
The time had come to campaign for another round of the IVIG. Nothing else seemed to be working and I was getting desperate and fighting bouts of depression. Sally had personally seen me work my ass off yet my improvement was nominal. There had to be an alternative so I spoke with her about another dose of the Jim Jones juice. Much to my surprise she agreed without much remonstration from me. She would later tell me she felt it necessary to “put all the chips in” given my forceful approach to my recovery. “If you were willing to put all of your chips into your recovery Rancho needed to do the same!” “When you have a patient willing to go the extra mile towards in pursuit of his recovery, the hospital has to match his bet and partner up. Chip for chip!”
The gears were now in motion. Sally began coordinating with the neurologist and the unit where the IVIG would be administered, 902. Everything seemed to be going forward until I spoke with the attending physician on the unit. Without mincing words he flat out told me that he had to first think about it given the medication cost and the need to have nurses available; in other words, no.
Well I immediately began to argue my case to anyone who would listen, “It will cost more to do nothing!” I contacted the Patient Advocate as well as Sally urging swift action towards the administration of the IVIG because the benefits substantially outweighed the costs. After meeting with the neurologist, he agreed with me and submitted his recommendation. The one misguided doctor was still the lone holdout. As luck would have it, another doctor came to the unit on rotation. He was the very same doctor who told me he didn’t know how the medication worked, just that it worked. (This doctor later told me months later he wrote me off. He said my condition was so acute he felt I’d never move again. I got that often. HAH!). Sally convinced him to agree to the medication. It was now the late May. For almost six months I didn’t receive any medication. The lapse in treatment sort of begs the question, doesn’t it?
At the time I received the second dose I had slight movement in my left arm and shoulder, I could barely lift my hand above my shoulder and only for a couple of seconds. My right arm was unable to move at the bicep and the arm could only be lifted just below the shoulder. My legs were still totally unable to hold up my weight; I was only able to stand with a brace wrapped around my bottom while holding onto a tall table, like a TV tray. It was now the beginning of June.
Over the next several weeks my improvement went beyond the anecdotal to being objectively measurable if only because it seemed to break the flat line measurement of previous weeks. My strength was increasing, my endurance was establishing new benchmarks with each try and range of motion seemed to increase. Two to three weeks after the serum I drove by the “write off” doctor who asked how I was doing. Almost automatically I raised my right arm way above my shoulder like I was hailing a New York cab, and said “GREAT!” Yes, I was trying to illicit a response of surprise; if I were counting on another treatment people needed to see marked improvement. If I had to dive off a ten meter high board I would have done it!
My demonstration worked. I was soon scheduled for another round of the medication.
On June 29, 2010, I took my first steps. During the preceding six months I was unable to stand on my own. Within twenty odd days of receiving the IVIG I was not only standing but I was also walking!
Since the second round I’ve had two more treatments at Rancho and two treatments at home with ten more treatments scheduled over as many months. Wow! Is that a change in treatment philosophy? The change of position with regard to treating me came about because of the perceived correlation between my recovery and the IVIG. As noted, my progression over the preceding six months was remarkable only because nothing was happening save significant weight loss. Once the IVIG was administered I broke through the proverbial glass ceiling where my progression curve began to ascend at a greater rate.
During a painful nerve conduction examination at USC I met up again with the original doctor who saw me in December and later ok’d the second IVIG treatment. He flat out stated that there is a big question of whether I would have recovered sooner had I been given the IVIG treatment early on instead of waiting for six months. I felt sick. In almost in the same breath he lauded the effects of the medication and seemed newly converted to its still unknown impact on the syndrome. I felt sicker. Where was his endorsement six months ago.
As P.A. Sally later said to me; as a direct result of my reaction to the IVIG I have re-written the way Rancho and the County of Los Angeles treats its GBS patients. Prior to my admission a GBS patient would be given one treatment during the initial intake and left to recover either at home or at a nursing facility. In either instance, recovery would be long in coming if it even happened. Now, GBS patients will be aggressively treated with IVIG with the goal of recovery. Only time will tell whether this change in philosophy will last beyond the immediate future. I’ll never forget the discussion I had with the doctor within weeks of my arrival at Rancho which centered on the need for additional IVIG treatments as well as extensive and vigorous physical therapy. The only thing the doctor could state was that I was “arguing against the paradigm of science.” I told him he didn’t know what the paradigm of science was because their position was predicated on an erroneous premise; therefore, any conclusion had to likewise be erroneous. Moreover, all medical papers dealing with the diagnosis and treatment of GBS were about 40 years old. For God’s sake, they didn’t know how the medication worked, or even if it worked. I then told him I would rewrite the literature, “follow me and Rancho will create a new paradigm of science!” I doubt the doctor still feels comfortable with his “paradigm.
After the third administration of the IVIG I bumped into the doctor who initially refused the IVIG. Well, he saw me walking. His eyes told me he was quite surprised. I called him over and asked him if my improvement was the result of the IVIG to which he profoundly responded, “I don’t know.” That was a comforting exchange.
Yesterday, I finished the second treatment at home without any major problems. The nurse does have a difficult time, however, at finding a workable vein. After the five day session my arms are covered with black and blue blotches from where she stuck me. It usually takes five or six tries before a vein is found.
WEIGHT
Understandably, weight loss has slowed if for no other reason than because I don’t have that much weight to lose. Additionally, I am gaining strength which necessarily means I’m building muscle, for example, my right bicep which has not worked at all has now fully come back into action with complete range of motion. Not only can I now bend it at the elbow but I can also support weight with it, a couple of lbs. Increased strength translates into increased muscle fiber which has more mass than fat.
Nevertheless, I dropped another pound to 170 lbs. for a total loss of 133 lbs. in ten months. I’m five pounds away from my original goal of 165 and only fifteen pounds away from my revised goal of 155 lbs. Who knows, maybe I’ll try 145 lbs. Keep in mind, the lighter I weigh the easier it is to get about. That is my primary goal. As I get stronger I will worry about gaining some weight back, but until then continued weight loss is the stated goal. Although my skin is re-absorbing I probably have at least about 10 lbs of it hanging around. Who has the knife?
PATIENT ADVISORY BOARD
One of the items of interest stemming from my determined advocacy is the seat on the Patient Advisory Committee. Our second meeting is scheduled for this Friday where we will earnestly begin developing new ways to bring the patient into partnership with the doctor to actively help in the coordination of his/her care.
Hospitals around the country are preparing for the changes brought about by the health care reform bill which, among other things, will affect how a hospital is paid by the government. If the hospital does not achieve certain benchmark scores, insurance payments will be reduced on the simple theory that if the hospital isn’t performing then it shouldn’t receive the same payments as hospitals which are reaching the threshold levels. Consequently, the hospital needs to sell itself.
I am asking everyone for your help. I’m sure many of you have had experiences with hospitals involving yourself, a friend or a loved one. If there was something which you felt could have been addressed which would have made the hospital stay a better experience let me know. I will then review your idea and see if it could be applied to Rancho, if it could I’ll submit the concept for discussion. So please, seriously think about it and get back to me with your ideas or thoughts.
As always, remember “It could be worse and there is always tomorrow!”
TAKE CARE.
AT WORK WRITING THE BOOK!
WRITING THE UPCOMING BOOK: "HOW TO 100 LBS. WHILE SITTING IN A CHAIR! (AND NEVER TAKING A STEP!)
Monday, November 8, 2010
Tuesday, November 2, 2010
FRANKENSTEIN REVISISTED 10-29-10
THIS IS SO HARD. TRYING TO MAINTAIN MY BALANCE WITHOUT THE ABILITY TO PUSH MY TOES MAKES THIS WALK DIFFICULT ALONG WITH THE FACT THAT MY LEGS ARE WEAK.
WALKING WITHOUT WALKER 10-29-10
THIS IS THE FIRST TIME I AM WALKER ON MY OWN IN ALMOST ELEVEN MONTHS. THERE WERE TIMES I THOUGHT I WOULD NEVER BE ABLE TO DO THIS. NEXT TIME I'LL DO IT BETTER AND STRONGER AND WITH GREATER ASSURANCE OF STRIDE!!
I'M NOT GIVING UP! VIDEO 10-29-10
I AM NOT GIVING UP!! I KNOW I CAN DO IT. IT'S JUST A MATTER OF EXECUTION.
TRYING FROM 25 INCHES 10-29-10
THE FIRST OF SEVERAL ATTEMPTS FROM 25 INCHES. THE DEGREE OF DIFFICULTY IS BECOMING APPARENT.
SIT TO STAND @ 27 INCHES 10-29-10
COMPARE THIS ATTEMPT WITH THE EARLIER ATTEMPT WHERE I AM VISIBLY READY TO EXPLODE!
10-28-10 133 lbs. LIGHTER
.jpg)
This photo was taken in my dining room. It's the most recent photo. Believe it or not I'm wearing a medium size sweater. LOVE IT. I have just saved some of the sheep herd.
THE JOURNEY CONTINUES! 10-27-10
EXTRA!
____________________
AFTERNOON EDITION
_____________________________________________
"THE AGGREGATE EXPERIENCE"
10-27-10
THE JOURNEY CONTINUES!
(does it ever stop?)
COMING HOME
Welcome everyone. Wow, can you believe six weeks have already gone by since I left the “Ranch!” I know it has been a long time since the release of the last AGGREGATE and no I have not been vacationing on Amalfi. Believe or not I’ve been busy but I’ll get to that in a minute. To get everyone back into THE AGGREGATE EXPERIENCE mode I’ve included the last edition below released on September 8, 2010.
It’s a short read:
“Well here it is, exactly forty weeks, or 280 days since I arrived here at the Ranch, or what I rather think of it as “The Fat Farm.” HAH! In a few hours the Ranch will be nothing more than a fading image in my rear view mirror but the impact it had on me will never fade with time. It will become the childhood house you move away from with memories of a life you can never relive and gratefully never forget.
I have lived a thousand lives during my stay here with each one soon to become a part of who will carry forth the journey towards recovery and to the end of my extended life. To experience what I have gone through one cannot help but be taken by the vastness of the emotional rollercoaster on which I have reluctantly travelled. This was an “E” ticket ride like no other. There were many times when there was simply no light at the end of the tunnel only to be measured by tearful joy from merely being able to touch my fingers together.
I was a passionate and emotional person before hell visited me, now I feel reborn ready to tackle life with a new and still evolving body and reconstituted soul. In a nutshell, I conquered HELL the way I wanted!
WEIGHT UPDATE
This morning I was weighed. I did it, I broke 180 lbs. I now weigh 179.86 lbs. I’ve lost a total of 123.14 lbs. in 280 days. WOW!! That translates into 0.4 lbs per day, 3.08 lbs per week. I’ll take it.
Thank you all for staying with me through this Odyssey. There will be more to come as there are more obstacles to overcome.
I again leave you with the simple words which have been the source of great strength and ability to come back for more: Remember “It could be worse.” And “There’s always tomorrow.”
I’M GOING HOME TODAY! NUFF SAID!!”
Short but effectively stated.
And here I casually sit in my dining room eating cantaloupe proudly and thankfully removed from the persistent and constant harangue from the same reluctant nurses bemoaning either the length of their shift or workload or listening to the misdirected rants of a regressive patient who just had his breakfast delivered 30 minutes late but says little about the lack of therapy or better patient care. Yes it is great to be home! Kansas couldn’t look any better.
Quite frankly, initially coming home wasn’t what one would usually expect after a lengthy hiatus. Forrest and I needed to move to a wheelchair accessible home. After searching for a month or so, we found one about one mile from our old place; a larger living area in a better location in a nicer area. The building is relatively new equipped with an elevator and underground parking.
Now, it’s one thing to come home to a place with which you are familiar, it’s quite a different notion, on the other hand, to come home to a place with which you’re unfamiliar. There wasn’t a familiar feel to my new place. Simply put, it didn’t feel like “home”, I didn’t feel like I owned the joint.
To make the move more problematic was that I was getting around in a power chair. Has anyone ever tried to get a power chair through a bathroom door? And once inside the bathroom, what do you do? Or better yet, how do you do it?
In the hospital I had trained personnel to call upon. At home I had Forrest who, understandably, was more interested in going out than in figuring out how to best facilitate and accommodate my needs. I didn’t even know what my needs were initially. But I told him from the outset: we had a big learning curve and over time a routine would be established about which we would become more proficient and efficient. Moreover, the process of care would necessarily become less involved as I improved. Items and help I would need early on in my stay would lessen as I became more independent from my increased physicality and range of motion. For example, after we removed the bathroom door and some of power chair’s apparatus, I could drive the power chair into the bathroom and transfer via the slide board to the commode chair. I would then transfer back to the power chair from where I would then transfer onto the bath bench which sat in the tub. This worked but it was cumbersome and required a lot of hands on assistance. Now I simply walk myself from my elevated bed, with the walker, to the bathroom and sit on the commode without any assistance. Because I’m still weak, Forrest then lifts me up when I’m finished where I, with the walker, then walk to the bath bench; when I’m finished showering he helps me with my polio shoes, lifts me up to the walker and I walk wherever; a lot more efficient and less hands-on involvement. Ya gotta love routines!
FOOD
I’ve tried to maintain some of the more rigorous elements of my prior routine such as diet and wake up time. As I will note below, my weight loss regime is as crucial now as it ever was. I not only have to continue to lose weight but I also have to insure no weight gain as this is a vital element of my recovery. I no longer, however, have an independent kitchen providing me with scheduled meals according to a well thought out and meticulously maintained menu. Now food is bought according to my needs and I prepare it. Maggie helps out a lot by cooking me meals or preparing food which I then cut up or heat during the week. My menu has broaden in variety: spinach is still the main anchor joined by beets, pepper, onion, asparagus, beans, tomatoes, celery, carrots, broccoli, beans, zucchini, avocados and a lot of fruit such as pineapple, apples, berries, cantaloupe, plums, pears, raisins along with the ever present breast of chicken, fish and ground turkey. Note, I only eat about three oz. of any one protein at a time. Also, I’ve expanded into eating TOTAL cereal with nonfat milk in the morning. Usually, however, my breakfast includes one hardboiled egg, whole wheat toast and some tomato slices. I don’t eat any pasta, dairy, drink juice, soda pop or coffee (unless I’m at the theatre where I drink Root Beer and munch on popcorn), and I don’t eat any red meat, never, ever! (I have been told there is some evidence that red meat impedes the recovery process for people inflicted with GBS.) I use virgin oil in my cooking and don’t use any butter or margarine..jpg)
I have been out to dinner many times such as Buca’s and maintain the diet at whichever eatery. I’ve even been to Starbucks where I had some green vegetable and fruit drink.
It’s funny, for such a long time, while at the hospital, I thought about going to “The Hat” or “Petrillos” and just chowing down until I exploded. I haven’t yet. Quite frankly, I’m afraid. I don’t know how my body will react and I have so much more recovery to do. The probability or even the possibility of regression is utterly incomprehensible to the point of fear. If I never touch another burger in my life it won’t bother me.
I also thought I would celebrate my departure from the hospital with a few libations. Well, I also 86’d that idea. I’m just too apprehensive of what effect my body will undergo with alcohol. For quite some time early on in this adventure my white blood cell count was dangerously low. Although it has recovered and is now within normal limits, I can’t take any chance of retarding my recovery or causing it to regress. I still have so much to do I couldn’t bear the thought of compromising my recovery.
WALKING
WALKING! The buck stops here. After all, everything I do, every ounce of energy I can muster is focused on the simple yet enormously difficult task of walking. By way of recap, I entered the hospital on December 8, 2009; by December 9, I was paralyzed from the neck down. I was soon told I’d never walk again.
I took my first steps on June 29, with the aid of four therapists where I “walked” about 20 feet. When I left “The Ranch” on September 8, I was able to walk without my knee brace and needing only one therapist. I also walked in a 1K event at The Ranch which took one hour and a half to complete.
Although I was crudely able to get about, the act of walking at home presented several concerns, not the least of which was falling. Additionally, my concern was the ability to walk on a regular schedule; I was only going to get therapy two hours a week, down from five hours per day.
When I arrived home Forrest and I walked around the house and outside in the common areas, however, time was limited as he worked and had school. Out of necessity I had to find a way to walk on my own. My feet and legs were getting quite swollen from non-activity and because they were essentially hanging without any support: I removed the footrests for better maneuverability. Consequently, and I must say reluctantly, I began to walk by myself throughout the day. I’d walk from the dining room to my bedroom and back and then stand while watching TV for about one to two hours a day. The scary part is leaving my chair which I raise to a suitable height and effectively jump off into the abyss and into the waiting security of the walker which itself looks like it’s going to snap in two, it’s made of aluminum piping. It’s funny, the only thing I could think about was the commercial of the old woman yelling “I’ve fallen and I can’t get up!”
Well, you guessed it, I fell, in fact, I’ve fallen a few times, each time leaving me a bit more reluctant to venture over the rise. For just a brief yet impressionable moment leaving the chair feels like the ride “Thelma and Louise” had off the edge of the cliff. Once walking I feel like tight rope walkers; you know where you’re going, but one misstep and you come tumbling down without a net. I’m sure Neil Armstrong felt the same way: not knowing where that famous foot was going to land. God, would I be a sight at a sobriety check-point! HAH!
Not to worry, progress has been made notwithstanding a few pratfalls. I figure you can’t fall unless you push yourself. When I left The Ranch I brought home a manual chair to get around outside my home. The chair was okay up to a point. Sure, it got me around but it had to be dissembled each time we got into the car and reassembled leaving the car. Because my arms are weak, I also had to be pushed around. It’s difficult to make conversation when someone is behind you. So after a few weeks I started walking with the walker to the parking garage where I would then sit down into the passenger seat of the car. The chair was becoming irrelevant. Initially, walking through the common area hallways was a challenge because of the raised door jams; I thought for sure I would trip over them. It wasn’t long before I was able to walk over the jams without any problem. Being able to walk to the garage and sit in my car removed the need for the chair. I have not used the chair in about one month.
With the absence of the chair a new problem became quickly apparent: how do I get out of the car, or for that matter up from a chair once I’ve sat down? Aha, here’s where the weight loss comes into play. My reduced weight makes it possible to be picked up. Whether it is Maggie, Forrest or two waiters, my slight of frame enables virtually anyone to pick me up into a semi standing position where my legs kick in and I can stand on my own. Concern resolved: next problem please.
Now I am free to virtually go anywhere as long as the terrain is not too severe such as steep declines or inclines. I’ve been to the movies, IKEA, restaurants and even “Travel Town” by Griffith Park without too much difficulty. While at Travel Town I negotiated steep declines and inclines. The declines are more adventuresome as they present unique concerns such as the walker leaving me like some old Keystone Cop episode, or more serious, my knees buckling because of the weight being forced forward which is a very weak position for me. The former concern is met with someone holding on to the walker to slow its descent while the latter concern is overcome with brute force and concentration.
In the morning I now walk from my bed (I purchased a new bed making sure it was positioned high) to the bathroom where I take care of my grooming needs while standing: I wash up, brush my teeth, shave and even comb the remaining hair while erect and stretching to the sky.
My biggest concern is being able to stand up from a seated position which is the single most imperative goal I have to conquer. Without being able to stand up from a low positioned chair I will forever be functionally disabled and limited in what I can do and how I efficient I can do it. Right now I have to transition to my power chair from which I can rise to a higher level to stand up or I need someone to physically hoist me up to a high enough position where I can bring myself to upright.
As noted in a previous video posted both on Facebook and on my blog you can see the difficult time I have standing up from twenty seven inches shortly after I left The Ranch. Please view the newly posted videos which shows me not only standing up from twenty seven inches with apparent ease, but it also shows me standing up from twenty six inches with equal ease. The last videos show me struggling with twenty five inches only to later successfully conquer the big “2 5”. In a month and a half I have been able to shave off two inches in pursuit of my ultimate goal.
I figure if I can get to twenty two inches I would be able to get up from an office chair (I might need a cushion). When that happens I’ll be able to seek employment without any obvious limitation. Additionally, I will be able to potentially get out of my car. You have to understand, my legs aren’t the only limbs getting stronger. My upper body has strengthened over the past few weeks from all of the unpacking, cleaning, cooking and washing I do every day. With the added strength, I’m hoping my arms can provide a substantial assist in standing up with the use of the car door or any other secure leverage point. So you see, matters are evolving and the quality of life is getting better.
OTHER MATTERS
As noted earlier I was asked to become an active member of Rancho’s Patient Advisory Board. I accepted and have already attended our first meeting. We plan on meeting at least once a month with appearances at other Rancho events. The goal during my year commitment is to identify areas where patient services and concerns can be better served through a more accommodating and case sensitive wellness paradigm.
WEIGHT
When I left the ranch I weighed 179 lbs. My initial goal was to reach 175 lbs. I knew as I approached my target weight, loss would be more difficult if only because I wouldn’t have anything to lose. Additionally, while at Rancho I worked out approximately five hours per day with two hours devoted to high intensity cardio work. I don’t get that level of exercise anymore.
There is no question that weight loss accelerated, if not primarily enabled my recovery. I would not be here today had I not decided early on in this journey to lose the weight. Consequently, I have revised my goal downward. Remember, for every pound I lose above the waist I reduce the pressure in my knees and therefore my legs, by ten pounds. Ten pounds may not be significant to everyone else but to me, who struggles to overcome the pressure of gravity on a daily basis, ten pounds could be the difference between getting myself out of the car and waiting for someone to help me. $500 for “Simple Answers, Alex.”
I currently weigh 171 lbs. I’ve lost over 130 lbs. WOW! That translates into over 1,300 lbs of pressure off of my knees! I need to at least get to 165 lbs. The weight translation and benefit is too significant to overlook. And in point of fact, 155 lbs is probably the better weight. Sixteen pounds converts into 160 lbs of weight reduction for my knees. There is no argument. If I had the extra skin removed I’d probably weigh less than 165 lbs. HAH!
As a side note, when I reach 155 lbs. I will have lost 49% of my body weight. Right now I have lost 43% of my body weight. Simply ridiculous!
Check out the new digital recordings of my current walking. The clips show me using a small walker as opposed to the previous “Trough Walker”. I know longer use the trough walker during therapy. It’s my plan to remove the troughs on my personal walker at home by November 15, subject, of course, to my abilities. The last clip shows me actually walking without anything holding me up except my legs between parallel bars. I felt like Frankenstein. I have to relearn how to walk and use my legs properly. The problem is that I have little to no control of my feet; consequently, I have trouble stabilizing. When you lean forward you engage the balls of your feet to keep from falling. I still don’t have sufficient strength to do that. But, I’m nevertheless walking. Keep in mind less than two months ago I could only walk twenty feet with the small walker. Now I walk all over the hospital with the small walker. My goal is to be using a cane by Christmas time. It can be done. “So let it be written, So let it be done!”
Thank you all for reading these 3271 words. I’ll keep everyone up to date. I’m still working on my book and will have a book signing at Rancho.
As always, remember “It could be worse and there is always tomorrow!”
TAKE CARE.
____________________
AFTERNOON EDITION
_____________________________________________
"THE AGGREGATE EXPERIENCE"
10-27-10
THE JOURNEY CONTINUES!
(does it ever stop?)
COMING HOME
Welcome everyone. Wow, can you believe six weeks have already gone by since I left the “Ranch!” I know it has been a long time since the release of the last AGGREGATE and no I have not been vacationing on Amalfi. Believe or not I’ve been busy but I’ll get to that in a minute. To get everyone back into THE AGGREGATE EXPERIENCE mode I’ve included the last edition below released on September 8, 2010.
It’s a short read:
“Well here it is, exactly forty weeks, or 280 days since I arrived here at the Ranch, or what I rather think of it as “The Fat Farm.” HAH! In a few hours the Ranch will be nothing more than a fading image in my rear view mirror but the impact it had on me will never fade with time. It will become the childhood house you move away from with memories of a life you can never relive and gratefully never forget.
I have lived a thousand lives during my stay here with each one soon to become a part of who will carry forth the journey towards recovery and to the end of my extended life. To experience what I have gone through one cannot help but be taken by the vastness of the emotional rollercoaster on which I have reluctantly travelled. This was an “E” ticket ride like no other. There were many times when there was simply no light at the end of the tunnel only to be measured by tearful joy from merely being able to touch my fingers together.
I was a passionate and emotional person before hell visited me, now I feel reborn ready to tackle life with a new and still evolving body and reconstituted soul. In a nutshell, I conquered HELL the way I wanted!
WEIGHT UPDATE
This morning I was weighed. I did it, I broke 180 lbs. I now weigh 179.86 lbs. I’ve lost a total of 123.14 lbs. in 280 days. WOW!! That translates into 0.4 lbs per day, 3.08 lbs per week. I’ll take it.
Thank you all for staying with me through this Odyssey. There will be more to come as there are more obstacles to overcome.
I again leave you with the simple words which have been the source of great strength and ability to come back for more: Remember “It could be worse.” And “There’s always tomorrow.”
I’M GOING HOME TODAY! NUFF SAID!!”
Short but effectively stated.
And here I casually sit in my dining room eating cantaloupe proudly and thankfully removed from the persistent and constant harangue from the same reluctant nurses bemoaning either the length of their shift or workload or listening to the misdirected rants of a regressive patient who just had his breakfast delivered 30 minutes late but says little about the lack of therapy or better patient care. Yes it is great to be home! Kansas couldn’t look any better.
Quite frankly, initially coming home wasn’t what one would usually expect after a lengthy hiatus. Forrest and I needed to move to a wheelchair accessible home. After searching for a month or so, we found one about one mile from our old place; a larger living area in a better location in a nicer area. The building is relatively new equipped with an elevator and underground parking.
Now, it’s one thing to come home to a place with which you are familiar, it’s quite a different notion, on the other hand, to come home to a place with which you’re unfamiliar. There wasn’t a familiar feel to my new place. Simply put, it didn’t feel like “home”, I didn’t feel like I owned the joint.
To make the move more problematic was that I was getting around in a power chair. Has anyone ever tried to get a power chair through a bathroom door? And once inside the bathroom, what do you do? Or better yet, how do you do it?
In the hospital I had trained personnel to call upon. At home I had Forrest who, understandably, was more interested in going out than in figuring out how to best facilitate and accommodate my needs. I didn’t even know what my needs were initially. But I told him from the outset: we had a big learning curve and over time a routine would be established about which we would become more proficient and efficient. Moreover, the process of care would necessarily become less involved as I improved. Items and help I would need early on in my stay would lessen as I became more independent from my increased physicality and range of motion. For example, after we removed the bathroom door and some of power chair’s apparatus, I could drive the power chair into the bathroom and transfer via the slide board to the commode chair. I would then transfer back to the power chair from where I would then transfer onto the bath bench which sat in the tub. This worked but it was cumbersome and required a lot of hands on assistance. Now I simply walk myself from my elevated bed, with the walker, to the bathroom and sit on the commode without any assistance. Because I’m still weak, Forrest then lifts me up when I’m finished where I, with the walker, then walk to the bath bench; when I’m finished showering he helps me with my polio shoes, lifts me up to the walker and I walk wherever; a lot more efficient and less hands-on involvement. Ya gotta love routines!
FOOD
I’ve tried to maintain some of the more rigorous elements of my prior routine such as diet and wake up time. As I will note below, my weight loss regime is as crucial now as it ever was. I not only have to continue to lose weight but I also have to insure no weight gain as this is a vital element of my recovery. I no longer, however, have an independent kitchen providing me with scheduled meals according to a well thought out and meticulously maintained menu. Now food is bought according to my needs and I prepare it. Maggie helps out a lot by cooking me meals or preparing food which I then cut up or heat during the week. My menu has broaden in variety: spinach is still the main anchor joined by beets, pepper, onion, asparagus, beans, tomatoes, celery, carrots, broccoli, beans, zucchini, avocados and a lot of fruit such as pineapple, apples, berries, cantaloupe, plums, pears, raisins along with the ever present breast of chicken, fish and ground turkey. Note, I only eat about three oz. of any one protein at a time. Also, I’ve expanded into eating TOTAL cereal with nonfat milk in the morning. Usually, however, my breakfast includes one hardboiled egg, whole wheat toast and some tomato slices. I don’t eat any pasta, dairy, drink juice, soda pop or coffee (unless I’m at the theatre where I drink Root Beer and munch on popcorn), and I don’t eat any red meat, never, ever! (I have been told there is some evidence that red meat impedes the recovery process for people inflicted with GBS.) I use virgin oil in my cooking and don’t use any butter or margarine.
.jpg)
I have been out to dinner many times such as Buca’s and maintain the diet at whichever eatery. I’ve even been to Starbucks where I had some green vegetable and fruit drink.
It’s funny, for such a long time, while at the hospital, I thought about going to “The Hat” or “Petrillos” and just chowing down until I exploded. I haven’t yet. Quite frankly, I’m afraid. I don’t know how my body will react and I have so much more recovery to do. The probability or even the possibility of regression is utterly incomprehensible to the point of fear. If I never touch another burger in my life it won’t bother me.
I also thought I would celebrate my departure from the hospital with a few libations. Well, I also 86’d that idea. I’m just too apprehensive of what effect my body will undergo with alcohol. For quite some time early on in this adventure my white blood cell count was dangerously low. Although it has recovered and is now within normal limits, I can’t take any chance of retarding my recovery or causing it to regress. I still have so much to do I couldn’t bear the thought of compromising my recovery.
WALKING
WALKING! The buck stops here. After all, everything I do, every ounce of energy I can muster is focused on the simple yet enormously difficult task of walking. By way of recap, I entered the hospital on December 8, 2009; by December 9, I was paralyzed from the neck down. I was soon told I’d never walk again.
I took my first steps on June 29, with the aid of four therapists where I “walked” about 20 feet. When I left “The Ranch” on September 8, I was able to walk without my knee brace and needing only one therapist. I also walked in a 1K event at The Ranch which took one hour and a half to complete.
Although I was crudely able to get about, the act of walking at home presented several concerns, not the least of which was falling. Additionally, my concern was the ability to walk on a regular schedule; I was only going to get therapy two hours a week, down from five hours per day.
When I arrived home Forrest and I walked around the house and outside in the common areas, however, time was limited as he worked and had school. Out of necessity I had to find a way to walk on my own. My feet and legs were getting quite swollen from non-activity and because they were essentially hanging without any support: I removed the footrests for better maneuverability. Consequently, and I must say reluctantly, I began to walk by myself throughout the day. I’d walk from the dining room to my bedroom and back and then stand while watching TV for about one to two hours a day. The scary part is leaving my chair which I raise to a suitable height and effectively jump off into the abyss and into the waiting security of the walker which itself looks like it’s going to snap in two, it’s made of aluminum piping. It’s funny, the only thing I could think about was the commercial of the old woman yelling “I’ve fallen and I can’t get up!”
Well, you guessed it, I fell, in fact, I’ve fallen a few times, each time leaving me a bit more reluctant to venture over the rise. For just a brief yet impressionable moment leaving the chair feels like the ride “Thelma and Louise” had off the edge of the cliff. Once walking I feel like tight rope walkers; you know where you’re going, but one misstep and you come tumbling down without a net. I’m sure Neil Armstrong felt the same way: not knowing where that famous foot was going to land. God, would I be a sight at a sobriety check-point! HAH!
Not to worry, progress has been made notwithstanding a few pratfalls. I figure you can’t fall unless you push yourself. When I left The Ranch I brought home a manual chair to get around outside my home. The chair was okay up to a point. Sure, it got me around but it had to be dissembled each time we got into the car and reassembled leaving the car. Because my arms are weak, I also had to be pushed around. It’s difficult to make conversation when someone is behind you. So after a few weeks I started walking with the walker to the parking garage where I would then sit down into the passenger seat of the car. The chair was becoming irrelevant. Initially, walking through the common area hallways was a challenge because of the raised door jams; I thought for sure I would trip over them. It wasn’t long before I was able to walk over the jams without any problem. Being able to walk to the garage and sit in my car removed the need for the chair. I have not used the chair in about one month.
With the absence of the chair a new problem became quickly apparent: how do I get out of the car, or for that matter up from a chair once I’ve sat down? Aha, here’s where the weight loss comes into play. My reduced weight makes it possible to be picked up. Whether it is Maggie, Forrest or two waiters, my slight of frame enables virtually anyone to pick me up into a semi standing position where my legs kick in and I can stand on my own. Concern resolved: next problem please.
Now I am free to virtually go anywhere as long as the terrain is not too severe such as steep declines or inclines. I’ve been to the movies, IKEA, restaurants and even “Travel Town” by Griffith Park without too much difficulty. While at Travel Town I negotiated steep declines and inclines. The declines are more adventuresome as they present unique concerns such as the walker leaving me like some old Keystone Cop episode, or more serious, my knees buckling because of the weight being forced forward which is a very weak position for me. The former concern is met with someone holding on to the walker to slow its descent while the latter concern is overcome with brute force and concentration.
In the morning I now walk from my bed (I purchased a new bed making sure it was positioned high) to the bathroom where I take care of my grooming needs while standing: I wash up, brush my teeth, shave and even comb the remaining hair while erect and stretching to the sky.
My biggest concern is being able to stand up from a seated position which is the single most imperative goal I have to conquer. Without being able to stand up from a low positioned chair I will forever be functionally disabled and limited in what I can do and how I efficient I can do it. Right now I have to transition to my power chair from which I can rise to a higher level to stand up or I need someone to physically hoist me up to a high enough position where I can bring myself to upright.
As noted in a previous video posted both on Facebook and on my blog you can see the difficult time I have standing up from twenty seven inches shortly after I left The Ranch. Please view the newly posted videos which shows me not only standing up from twenty seven inches with apparent ease, but it also shows me standing up from twenty six inches with equal ease. The last videos show me struggling with twenty five inches only to later successfully conquer the big “2 5”. In a month and a half I have been able to shave off two inches in pursuit of my ultimate goal.
I figure if I can get to twenty two inches I would be able to get up from an office chair (I might need a cushion). When that happens I’ll be able to seek employment without any obvious limitation. Additionally, I will be able to potentially get out of my car. You have to understand, my legs aren’t the only limbs getting stronger. My upper body has strengthened over the past few weeks from all of the unpacking, cleaning, cooking and washing I do every day. With the added strength, I’m hoping my arms can provide a substantial assist in standing up with the use of the car door or any other secure leverage point. So you see, matters are evolving and the quality of life is getting better.
OTHER MATTERS
As noted earlier I was asked to become an active member of Rancho’s Patient Advisory Board. I accepted and have already attended our first meeting. We plan on meeting at least once a month with appearances at other Rancho events. The goal during my year commitment is to identify areas where patient services and concerns can be better served through a more accommodating and case sensitive wellness paradigm.
WEIGHT
When I left the ranch I weighed 179 lbs. My initial goal was to reach 175 lbs. I knew as I approached my target weight, loss would be more difficult if only because I wouldn’t have anything to lose. Additionally, while at Rancho I worked out approximately five hours per day with two hours devoted to high intensity cardio work. I don’t get that level of exercise anymore.
There is no question that weight loss accelerated, if not primarily enabled my recovery. I would not be here today had I not decided early on in this journey to lose the weight. Consequently, I have revised my goal downward. Remember, for every pound I lose above the waist I reduce the pressure in my knees and therefore my legs, by ten pounds. Ten pounds may not be significant to everyone else but to me, who struggles to overcome the pressure of gravity on a daily basis, ten pounds could be the difference between getting myself out of the car and waiting for someone to help me. $500 for “Simple Answers, Alex.”
I currently weigh 171 lbs. I’ve lost over 130 lbs. WOW! That translates into over 1,300 lbs of pressure off of my knees! I need to at least get to 165 lbs. The weight translation and benefit is too significant to overlook. And in point of fact, 155 lbs is probably the better weight. Sixteen pounds converts into 160 lbs of weight reduction for my knees. There is no argument. If I had the extra skin removed I’d probably weigh less than 165 lbs. HAH!
As a side note, when I reach 155 lbs. I will have lost 49% of my body weight. Right now I have lost 43% of my body weight. Simply ridiculous!
Check out the new digital recordings of my current walking. The clips show me using a small walker as opposed to the previous “Trough Walker”. I know longer use the trough walker during therapy. It’s my plan to remove the troughs on my personal walker at home by November 15, subject, of course, to my abilities. The last clip shows me actually walking without anything holding me up except my legs between parallel bars. I felt like Frankenstein. I have to relearn how to walk and use my legs properly. The problem is that I have little to no control of my feet; consequently, I have trouble stabilizing. When you lean forward you engage the balls of your feet to keep from falling. I still don’t have sufficient strength to do that. But, I’m nevertheless walking. Keep in mind less than two months ago I could only walk twenty feet with the small walker. Now I walk all over the hospital with the small walker. My goal is to be using a cane by Christmas time. It can be done. “So let it be written, So let it be done!”
Thank you all for reading these 3271 words. I’ll keep everyone up to date. I’m still working on my book and will have a book signing at Rancho.
As always, remember “It could be worse and there is always tomorrow!”
TAKE CARE.
Wednesday, September 22, 2010
09-22-10 - THE RACE TO THE TOP!!
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This is a great exercise. The settings provide me with an objective measure of my performance: if i walked 0.50 miles today I know I have to exceed that amount tomorrow. Every week I shall walk faster and farther until I no longer need either the treadmill or the walker. The goal is identified and I shall grab it!! I LOVE IT!!
09-22-10 - Treadmill exercise.
Notice the lack butt. Side effect of losing 130 lbs. and muscle mass. This is grueling.
09-22-10 - Treadmill exercise. Erin is next to me.
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The hoist is not holding me up. In the event I fall it's there to catch me. The first time I walked the treadmill I started at a 0.2 and worked up to 0.8, normal speed is 1.3. I walked 20 minutes. Today I started at 0.9 and worked up to 1.1 for 30 minutes. I covered 0.5 miles. Not bad.
Saturday, September 18, 2010
The Entourage - 1k walk at the Ranch 09-18-10
People started to gather around me as I was walking to cheer me on. Some of the girls were singing Journey songs. It was amazing!
Roll Around the Ranch - 1k walk 09-18-10
Erin and me at the "Roll Around the Ranch" held at Rancho. I walked the 1k event which amounts to 0.62 miles. It took me an hour and a half, but I did it. Not bad for someone who wasn't supposed to walk again.
Wednesday, September 15, 2010
The Walker pictured here is the next aid in line to walking on my own. Contrary to the Trough Walker, on which my weight is distributed between my arms and legs, this walker transfers much of the weight to my legs. My arms are still very week and can't hold up much. When I first walked with this smaller Walker I only walked about 15 feet, today I walked about 140 feet. Every week I walk farther.
Friday, September 10, 2010
"THE AGGREGATE EXPERIENCE 09-07-10 - MISSION ACCOMPLISHED
EXTRA!
____________________
SUPPLEMENTAL MORNING EDITION
______________________________________________
"THE AGGREGATE EXPERIENCE"
09-07-10
MISSION ACCOMPLISHED!
FIRST STAGE
Well here it is, exactly forty weeks, or 280 days since I arrived here at the Ranch, or what I rather think of it as “The Fat Farm.” HAH! In a few hours the Ranch will be nothing more than a fading image in my rear view mirror but the impact it had on me will never fade with time. It will become the childhood house you move away from with memories of a life you can never relive and gratefully never forget.
I have lived a thousand lives during my stay at the Ranch with each one soon to become a part of who will carry forth the journey towards recovery and to the end of my extended life. To experience what I have gone through one cannot help but be taken by the vastness of the emotional rollercoaster on which I have reluctantly travelled. This was an “E” ticket ride like no other. There were many times when there was simply no light at the end of the tunnel only to be measured by tearful joy from merely being able to touch my fingers together.
I was a passionate and emotional person before hell visited me, now I feel reborn ready to tackle life with a new and still evolving body and reconstituted soul. In a nutshell, I conquered HELL the way I wanted!
WEIGHT UPDATE
This morning I was weighed. I did it, I broke 180 lbs. I now weigh 179.86 lbs. I’ve lost a total of 123.14 lbs. in 280 days. WOW!! That translates into 0.4 lbs per day, 3.08 lbs per week. I’ll take it.
Thank you all for staying with me through this Odyssey. There will be more to come as there are more obstacles to overcome.
I again leave you with the simple words which have been the source of great strength and ability to come back for more: Remember “It could be worse.” And “There’s always tomorrow.”
I’M GOING HOME TODAY! NUFF SAID!!
____________________
SUPPLEMENTAL MORNING EDITION
______________________________________________
"THE AGGREGATE EXPERIENCE"
09-07-10
MISSION ACCOMPLISHED!
FIRST STAGE
Well here it is, exactly forty weeks, or 280 days since I arrived here at the Ranch, or what I rather think of it as “The Fat Farm.” HAH! In a few hours the Ranch will be nothing more than a fading image in my rear view mirror but the impact it had on me will never fade with time. It will become the childhood house you move away from with memories of a life you can never relive and gratefully never forget.
I have lived a thousand lives during my stay at the Ranch with each one soon to become a part of who will carry forth the journey towards recovery and to the end of my extended life. To experience what I have gone through one cannot help but be taken by the vastness of the emotional rollercoaster on which I have reluctantly travelled. This was an “E” ticket ride like no other. There were many times when there was simply no light at the end of the tunnel only to be measured by tearful joy from merely being able to touch my fingers together.
I was a passionate and emotional person before hell visited me, now I feel reborn ready to tackle life with a new and still evolving body and reconstituted soul. In a nutshell, I conquered HELL the way I wanted!
WEIGHT UPDATE
This morning I was weighed. I did it, I broke 180 lbs. I now weigh 179.86 lbs. I’ve lost a total of 123.14 lbs. in 280 days. WOW!! That translates into 0.4 lbs per day, 3.08 lbs per week. I’ll take it.
Thank you all for staying with me through this Odyssey. There will be more to come as there are more obstacles to overcome.
I again leave you with the simple words which have been the source of great strength and ability to come back for more: Remember “It could be worse.” And “There’s always tomorrow.”
I’M GOING HOME TODAY! NUFF SAID!!
Monday, September 6, 2010
The Last Edition of "TAE" From Rancho!
EXTRA!
____________________
MORNING EDITION
__________________________________________
"THE AGGREGATE EXPERIENCE"
09-04-10
EPILOGUE
THE JOURNEY HOME
Tuesday, September 7, 2010, will mark my return home. That amounts to exactly forty weeks, or 280 days or 76.7% of one year. To put this into perspective: the human gestation period--the period of time between conception and labor--is approximately forty weeks (280 days), measured from the first day of the mother's last menstrual period. WOW!! I can’t help but laugh when I think of my first thoughts about this “illness”. I remember telling Forrest on the second or third day of my hospitalization, “I’ll be home next week!” I was dreaming.
I have written much over the last several months about my recovery, the battles with the administration and the characters which make up Rancho. It has certainly been an adventure of the mind and spirit. Often times I felt I was in the sequel to “One flew Over the Cuckoo’s Nest”, while other times I felt I was a contestant in the “Survivor” or “The Biggest Loser” reality shows. In each reality show the contestant goes home, either to bask in the glory of the win or to play out the rest of the game at home.
For me, this stage of the reality show is over. I now will now go to my new home to carry on the game winning attitude I so perfected while at the Ranch. Of course, at home there will be temptation and opportunity for diversion, but it “ain’t gonna” happen. I have worked too hard for a hell of a long time not to take advantage of the fruits of my labor. I am healthier now than I’ve been in years with literally a new body with which to attack life for the next fifty years. As I tell my doctor I am the healthiest sick person in the hospital. There will be no back tracking here.
To be sure, there will be plenty to do at home to keep me busy while providing therapy at the same time. There’s still the matter of unpacking boxes, getting to know the layout of my new place and adapting my life to my physical restrictions.
Aside from the mundane I’ll also be preparing myself to reenter the work force. One of the difficulties I have, other than walking, is manipulating my fingers on both hands and my left wrist. As seen in the photos my fingers can’t extend and fully open and the pointing finger on my left hand doesn’t bend at the big knuckle and is extremely weak; consequently, my middle finger acts like the pointer, with the other nine fingers not doing much better. Every day I spend several hours at the keyboard exercising my fingers and hands, however, given my fingers were one of the first body parts to feel the effects of the GBS, they will be the last to recover and in all likelihood will never fully regain their full range.
One of the interesting consequences resulting from the way I vigorously advocated my recovery at the Ranch is I’ve been asked to sit on the newly formed Patient Advisory Board where I will be addressing patient concerns with the executive board and developing new procedures and practices for implementing new policy. They’ve asked for a year commitment to which I’ve agreed. I have my first meeting on Thursday with the physical therapy department.
WEIGHT LOSS
I have not been on the scale since my last weigh-in. I know I’ve continued to lose weight and am certain I’ve hit my goal of 185 lbs. I can safely say I’ve lost over 118 lbs. in 280 days. Using 118 lbs. for calculation purposes means I’ve lost at minimum 0.64 lbs per day or 2.95 lbs per week during my stay at the fat farm, which amounts to 39% weight loss. Not bad.
Earlier my goal was to hit 175 lbs. Well, I have revised the amount downward given the extreme loss of muscle mass resulting from atrophy leaving my frame narrow and small. The new goal is 165 lbs. which is appropriate given my height and body style.
DIET
Once home I will continue a strict dietary regimen restricting my diet to low starch vegetables, lots of spinach, fruit, limited whole grains, chicken breast (3 oz.), fish (3 oz.) and turkey breast (3 oz.). I will stay away from red meat, juice, pasta, and dairy (with the exception of a cup of nonfat milk in the morning with a bowl of whole grain cereal and fruit). In other words, there will be no trips to The Hat, Taco Bell, McDonalds; you get the idea. (Well maybe, one trip to Petrillos.)
WALKING UPDATE
Since my first steps on June 29, my strength and ability to walk has increased to the delight and surprise of my therapists. After all, 39 weeks ago they were delivered a morbidly obese totally paralyzed (mouth excepted) loudmouth and told to rehabilitate me. Whew, talk about impossibility! To be sure, there is still much work and strength acquisition needed before walking becomes part of me again; it is foreign and quite frankly, I get scared every time I take a step. My body is still not totally mine, and sometimes it does things outside of my control raising the specter of falling.
Despite the fear factor, I’m walking as often as I can to strengthen the variety of muscles needed to walk with assurance of stride. Last week I walked with a small walker which is held with just my hands. In contrast to the trough walker where my weight is distributed between my shoulders and legs, with the small walker, most of my weight is supported by my legs. My arms are simply too weak to hold any weight.
The first time with the small walker I walked about 15 to 20 feet. The second time 40 to 50 feet, the aggregate at its best. By December I will be walking several miles without any walker.
A funny thing happened the other day. For the last few days, I’ve been using a manual chair; my power chair was sent home ahead of me. I was in the gym preparing for my hour walk. I maneuvered my “polio shoe” over my left foot, slipping it into the shoe. The top fasten was easy to secure leaving the bottom Velcro straps for last. I slowly leaned over making sure I was balanced properly as I did a thousand times in my power chair. While I was fastening the shoe I was talking to another patient who also in a wheelchair. I stretched my right arm out and had the farthest strap in my hand. I leaned a fraction of an inch lower when the lightweight chair tilted forward throwing me out of the chair. All I heard was the guy next to me yell, “oh, oh!” Without panic, I put my arms forward to catch my fall. That would have worked had I some strength. My elbows bent without slowing me down in the slightest. My right knee, the gimp knee, hit the solid floor hard. My head was next; without strength all I could do was turn my head so I wouldn’t fall nose first.
I was angry with myself for taking such a risky move and potentially causing me substantial injury. The therapist entered the gym just as my rear end was making the pitiful arc towards the ground. She helped me to a sitting position where I sat for a time waiting for the pain in my knee to subside. Within a few minutes I was walking hoping I wouldn’t feel any residual pain in my knee. This is why I feel anxious every time I walk; the probability of falling is high and the probability of injuring myself is even higher.
DEVELOPMENTS
The next Edition of “TAE” will be from my home. Outstanding.
I leave you all with the most prophetic closing: Always remember “It could be worse.” And “There’s always tomorrow.”
I’M GOING HOME TOMORROW! NUFF SAID!!
____________________
MORNING EDITION
__________________________________________
"THE AGGREGATE EXPERIENCE"
09-04-10
EPILOGUE
THE JOURNEY HOME
Tuesday, September 7, 2010, will mark my return home. That amounts to exactly forty weeks, or 280 days or 76.7% of one year. To put this into perspective: the human gestation period--the period of time between conception and labor--is approximately forty weeks (280 days), measured from the first day of the mother's last menstrual period. WOW!! I can’t help but laugh when I think of my first thoughts about this “illness”. I remember telling Forrest on the second or third day of my hospitalization, “I’ll be home next week!” I was dreaming.
I have written much over the last several months about my recovery, the battles with the administration and the characters which make up Rancho. It has certainly been an adventure of the mind and spirit. Often times I felt I was in the sequel to “One flew Over the Cuckoo’s Nest”, while other times I felt I was a contestant in the “Survivor” or “The Biggest Loser” reality shows. In each reality show the contestant goes home, either to bask in the glory of the win or to play out the rest of the game at home.
For me, this stage of the reality show is over. I now will now go to my new home to carry on the game winning attitude I so perfected while at the Ranch. Of course, at home there will be temptation and opportunity for diversion, but it “ain’t gonna” happen. I have worked too hard for a hell of a long time not to take advantage of the fruits of my labor. I am healthier now than I’ve been in years with literally a new body with which to attack life for the next fifty years. As I tell my doctor I am the healthiest sick person in the hospital. There will be no back tracking here.
To be sure, there will be plenty to do at home to keep me busy while providing therapy at the same time. There’s still the matter of unpacking boxes, getting to know the layout of my new place and adapting my life to my physical restrictions.
Aside from the mundane I’ll also be preparing myself to reenter the work force. One of the difficulties I have, other than walking, is manipulating my fingers on both hands and my left wrist. As seen in the photos my fingers can’t extend and fully open and the pointing finger on my left hand doesn’t bend at the big knuckle and is extremely weak; consequently, my middle finger acts like the pointer, with the other nine fingers not doing much better. Every day I spend several hours at the keyboard exercising my fingers and hands, however, given my fingers were one of the first body parts to feel the effects of the GBS, they will be the last to recover and in all likelihood will never fully regain their full range.
One of the interesting consequences resulting from the way I vigorously advocated my recovery at the Ranch is I’ve been asked to sit on the newly formed Patient Advisory Board where I will be addressing patient concerns with the executive board and developing new procedures and practices for implementing new policy. They’ve asked for a year commitment to which I’ve agreed. I have my first meeting on Thursday with the physical therapy department.
WEIGHT LOSS
I have not been on the scale since my last weigh-in. I know I’ve continued to lose weight and am certain I’ve hit my goal of 185 lbs. I can safely say I’ve lost over 118 lbs. in 280 days. Using 118 lbs. for calculation purposes means I’ve lost at minimum 0.64 lbs per day or 2.95 lbs per week during my stay at the fat farm, which amounts to 39% weight loss. Not bad.
Earlier my goal was to hit 175 lbs. Well, I have revised the amount downward given the extreme loss of muscle mass resulting from atrophy leaving my frame narrow and small. The new goal is 165 lbs. which is appropriate given my height and body style.
DIET
Once home I will continue a strict dietary regimen restricting my diet to low starch vegetables, lots of spinach, fruit, limited whole grains, chicken breast (3 oz.), fish (3 oz.) and turkey breast (3 oz.). I will stay away from red meat, juice, pasta, and dairy (with the exception of a cup of nonfat milk in the morning with a bowl of whole grain cereal and fruit). In other words, there will be no trips to The Hat, Taco Bell, McDonalds; you get the idea. (Well maybe, one trip to Petrillos.)
WALKING UPDATE
Since my first steps on June 29, my strength and ability to walk has increased to the delight and surprise of my therapists. After all, 39 weeks ago they were delivered a morbidly obese totally paralyzed (mouth excepted) loudmouth and told to rehabilitate me. Whew, talk about impossibility! To be sure, there is still much work and strength acquisition needed before walking becomes part of me again; it is foreign and quite frankly, I get scared every time I take a step. My body is still not totally mine, and sometimes it does things outside of my control raising the specter of falling.
Despite the fear factor, I’m walking as often as I can to strengthen the variety of muscles needed to walk with assurance of stride. Last week I walked with a small walker which is held with just my hands. In contrast to the trough walker where my weight is distributed between my shoulders and legs, with the small walker, most of my weight is supported by my legs. My arms are simply too weak to hold any weight.
The first time with the small walker I walked about 15 to 20 feet. The second time 40 to 50 feet, the aggregate at its best. By December I will be walking several miles without any walker.
A funny thing happened the other day. For the last few days, I’ve been using a manual chair; my power chair was sent home ahead of me. I was in the gym preparing for my hour walk. I maneuvered my “polio shoe” over my left foot, slipping it into the shoe. The top fasten was easy to secure leaving the bottom Velcro straps for last. I slowly leaned over making sure I was balanced properly as I did a thousand times in my power chair. While I was fastening the shoe I was talking to another patient who also in a wheelchair. I stretched my right arm out and had the farthest strap in my hand. I leaned a fraction of an inch lower when the lightweight chair tilted forward throwing me out of the chair. All I heard was the guy next to me yell, “oh, oh!” Without panic, I put my arms forward to catch my fall. That would have worked had I some strength. My elbows bent without slowing me down in the slightest. My right knee, the gimp knee, hit the solid floor hard. My head was next; without strength all I could do was turn my head so I wouldn’t fall nose first.
I was angry with myself for taking such a risky move and potentially causing me substantial injury. The therapist entered the gym just as my rear end was making the pitiful arc towards the ground. She helped me to a sitting position where I sat for a time waiting for the pain in my knee to subside. Within a few minutes I was walking hoping I wouldn’t feel any residual pain in my knee. This is why I feel anxious every time I walk; the probability of falling is high and the probability of injuring myself is even higher.
DEVELOPMENTS
The next Edition of “TAE” will be from my home. Outstanding.
I leave you all with the most prophetic closing: Always remember “It could be worse.” And “There’s always tomorrow.”
I’M GOING HOME TOMORROW! NUFF SAID!!
Saturday, September 4, 2010
A BEAVY OF BEAUTIES!! 08-31-10
seated around me is the team of therapist who all had a hand in my recovery. Erin and Jennifer, my two primary therapists are seated on either side of me.
Tuesday, August 31, 2010
THUMBS UP!!!
Take note, you don't see a walker. First picture without holding on to the walker. (I am holding on to the girls!!).
MY PHYSICAL THERAPISTS, ERIN AND JENNIFER.
These two ladies have been with me since I arrived at Rancho.
Monday, August 30, 2010
THE AGGREGATE EXPERIENCE - 08-26-10
EXTRA!
____________________
MORNING EDITION
_______________________________________________
"THE AGGREGATE EXPERIENCE"
08-26-10
CROSSROADS
THE ROAD TO RECOVERY
Many months ago I began a journey which would test the very foundation of my soul, spirit and will to survive. September 8, 2010, will mark the nine month anniversary of the onset of my GBS. I say mine because it’s no one else’s. The GBS I have is unlike any other GBS because I am the one who had to deal with it, who had to live with it and who ultimately conquered it despite Rancho’s initial reluctance to effectively treat it.
Yes, I have written about my hell and the daily goings on here at the “Ranch” with the hope of bringing to the reader an understanding and appreciation of what I’ve gone through, but my words could never fully detail and convey the level of frustration and despair which visited me on a daily basis. Nor could my words explain the sheer joy felt when I first touched my thumb to my finger, when I first scratched my head or the intense fear I now experience and battle every time I leave my chair to walk.
While in the hospital I created a structure and working paradigm focused on nothing more than recovery made up of two components: weight loss and strength acquisition. Whatever it took to bring my body to a place where it would thrive and my neuro pathways would rebuild, I did. In the best of circumstances, under ideal conditions, the pathways rebuild one inch per month. Think about, three feet of nerve between my hip and foot translates into thirty six months of repair! That’s what lay before me.
To be sure my recovery has been slow and arduous. It was only a few months ago my doctors thought I would never walk again. I was starting to believe them because it seemed no matter what I did, no matter how many hours I sweated and toiled exercising, I was unable to stand, let alone walk with assistance. The thought of never walking or moving my body most certainly has done something to me I still don’t understand.
To the surprise of all I began to walk beginning on June 29, while surrounded by four therapists. It wasn’t long before I was walking longer distances with fewer persons on watch. Just last week I began walking without the ever present right leg brace and with only one therapist. With walking came liberation and a strengthened hope to regain that which was abruptly and without notice taken from me, my life and independence.
To walk again, even with a walker, is simply the truest form of joy and relief one can experience. By way of measure, regaining the ability to walk can be loosely compared to the feeling a parent experiences after finding their child who was lost in a crowd, a parent’s worst nightmare. It’s probably happened to everyone. When it happens, the initial reaction of fear, despair and wonderment is devastating where your life would be readily given for the safe return of your baby. Then out of the corner of your eye, your child’s recognizable gnome like frame comes into view and you quickly focus on the eyes, searching for pain or confusion to make sure all is well; you see a soft smile form on the smooth still unaffected young face and eyes, hidden behind long hair, grow wide with recognition and love all the while reaching out with a small fat hand to your waiting embrace. For that brief moment all life has stopped around you and sound doesn’t exist with the exception of the pounding coming from your chest which is about to explode while your stomach shudders with a dry convulsive heave. The euphoria brought by the find is too overwhelming even for the dispassionate; emotion takes over and you either cry inside or outside, it doesn’t matter, you still cry because of how relieved and happy you feel.
I lose and find my child every time I walk.
My journey has now brought me to a crossroads in my recovery. I’m going home.
A new odyssey will begin far from the pink hued walls of Rancho where hotel style pictures randomly break the monotony of tunnel length hallways. And despite the frequently sterilized feel and smell of the hospital there is a certain comfort found after nine months of traversing the often dimly lit corridors in my power chair, the only noise coming from the rubber tires squeaking over the waxed linoleum floor amplified by the empty vastness of the space. I know the place and I know the people. More importantly, the people know me.
But home with my son has always been the goal and home is where I belong. While at home I’ll be met with new challenges resulting from a new level of independence and a greater degree of freedom. To help me along I will have both a power and manual chair. Notably absent will be the well crafted paradigm and structured lifestyle it took me nine months to develop. I suspect I’ll feel out of sorts initially, after all, the person who left will not be the person returning. It is imperative I maintain a strong focus on the continued objective, complete recovery and maintenance of health. Recovery will not end simply upon my return home. In fact, as a result of the increased freedom and partial success towards recovery, I’ll have to be extra vigilant to insure marked movement forward. Complacency cannot set in; consequently, I will have to increase my intensity and discipline until I advance another workable routine to see me through December which will be the next turning point in my recovery. (Stay tuned.) Another unavoidable variable is I’ll be coming home to a new place. The learning curve will have to be fast and steep. A new odyssey to be sure. I LOVE IT!
WEIGHT LOSS
The weight loss hasn’t stopped. I now weigh 188 lbs. or 85.5 kilos, for a total loss of 115 lbs. As you recall, my goal was to get to 185 lbs. by my departure date currently scheduled for September 1. With only three pounds left, the goal is very doable. As noted last week, however, I may be here for an additional week receiving another IVIG treatment in which case I’ll aim for 179 lbs. WOW!! That’s a total loss of 124 lbs. We shall see. The effort shall be made, whether the body responds is another issue.
An interesting consequence of the weight loss: I am swimming in all of my clothes. My shirts look like dresses. When I depart, I will donate all of my clothes to the hospital. There are a lot of patients here who simply don’t have anything to wear save the unappealing medical gown. Having something to wear will make the patients feel better about themselves.
I urge everyone to donate some clothing, including shoes, to the hospital.
DEPARTURE DATE
All of the doctors agree that another IVIG treatment will aid my continued recovery. The issue is one of coordination between the respective units or wards. Before the IVIG can be administered I need to be transferred to an unit equipped to handle the administration. I’ll know for certain on Monday whether the treatment will be administered before I leave, although it looks pretty certain. If so, I’ll be here through September 6, just two days shy of nine months since the onset of my GBS.
DEVELOPMENTS
By Monday, Forrest and I will be in our new digs just down the street from our current place. It’s bigger and in a very nice area of Sherman Oaks. It’s a newer building with elevators, a gym and underground parking for both cars. Forrest tells me one of the tenants is Robert Blake of Baretta fame (1975-1978). He also starred in In Cold Blood.
Always remember “It could be worse.” And “There’s always tomorrow.”
I leave you with a continuing proverb:
Exercise caution in your business affairs, for the world is full of trickery. But let not this blind you to what virtue there is; many persons strive for high ideals, and everywhere life is full of heroism. Be yourself. Especially do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment it is as perennial as the grass. Take kindly the counsel of the years, gracefully surrendering the things of youth.
In other words, be honest with yourself, be honest with others and appreciate the wisdom and discipline of your age.
____________________
MORNING EDITION
_______________________________________________
"THE AGGREGATE EXPERIENCE"
08-26-10
CROSSROADS
THE ROAD TO RECOVERY
Many months ago I began a journey which would test the very foundation of my soul, spirit and will to survive. September 8, 2010, will mark the nine month anniversary of the onset of my GBS. I say mine because it’s no one else’s. The GBS I have is unlike any other GBS because I am the one who had to deal with it, who had to live with it and who ultimately conquered it despite Rancho’s initial reluctance to effectively treat it.
Yes, I have written about my hell and the daily goings on here at the “Ranch” with the hope of bringing to the reader an understanding and appreciation of what I’ve gone through, but my words could never fully detail and convey the level of frustration and despair which visited me on a daily basis. Nor could my words explain the sheer joy felt when I first touched my thumb to my finger, when I first scratched my head or the intense fear I now experience and battle every time I leave my chair to walk.
While in the hospital I created a structure and working paradigm focused on nothing more than recovery made up of two components: weight loss and strength acquisition. Whatever it took to bring my body to a place where it would thrive and my neuro pathways would rebuild, I did. In the best of circumstances, under ideal conditions, the pathways rebuild one inch per month. Think about, three feet of nerve between my hip and foot translates into thirty six months of repair! That’s what lay before me.
To be sure my recovery has been slow and arduous. It was only a few months ago my doctors thought I would never walk again. I was starting to believe them because it seemed no matter what I did, no matter how many hours I sweated and toiled exercising, I was unable to stand, let alone walk with assistance. The thought of never walking or moving my body most certainly has done something to me I still don’t understand.
To the surprise of all I began to walk beginning on June 29, while surrounded by four therapists. It wasn’t long before I was walking longer distances with fewer persons on watch. Just last week I began walking without the ever present right leg brace and with only one therapist. With walking came liberation and a strengthened hope to regain that which was abruptly and without notice taken from me, my life and independence.
To walk again, even with a walker, is simply the truest form of joy and relief one can experience. By way of measure, regaining the ability to walk can be loosely compared to the feeling a parent experiences after finding their child who was lost in a crowd, a parent’s worst nightmare. It’s probably happened to everyone. When it happens, the initial reaction of fear, despair and wonderment is devastating where your life would be readily given for the safe return of your baby. Then out of the corner of your eye, your child’s recognizable gnome like frame comes into view and you quickly focus on the eyes, searching for pain or confusion to make sure all is well; you see a soft smile form on the smooth still unaffected young face and eyes, hidden behind long hair, grow wide with recognition and love all the while reaching out with a small fat hand to your waiting embrace. For that brief moment all life has stopped around you and sound doesn’t exist with the exception of the pounding coming from your chest which is about to explode while your stomach shudders with a dry convulsive heave. The euphoria brought by the find is too overwhelming even for the dispassionate; emotion takes over and you either cry inside or outside, it doesn’t matter, you still cry because of how relieved and happy you feel.
I lose and find my child every time I walk.
My journey has now brought me to a crossroads in my recovery. I’m going home.
A new odyssey will begin far from the pink hued walls of Rancho where hotel style pictures randomly break the monotony of tunnel length hallways. And despite the frequently sterilized feel and smell of the hospital there is a certain comfort found after nine months of traversing the often dimly lit corridors in my power chair, the only noise coming from the rubber tires squeaking over the waxed linoleum floor amplified by the empty vastness of the space. I know the place and I know the people. More importantly, the people know me.
But home with my son has always been the goal and home is where I belong. While at home I’ll be met with new challenges resulting from a new level of independence and a greater degree of freedom. To help me along I will have both a power and manual chair. Notably absent will be the well crafted paradigm and structured lifestyle it took me nine months to develop. I suspect I’ll feel out of sorts initially, after all, the person who left will not be the person returning. It is imperative I maintain a strong focus on the continued objective, complete recovery and maintenance of health. Recovery will not end simply upon my return home. In fact, as a result of the increased freedom and partial success towards recovery, I’ll have to be extra vigilant to insure marked movement forward. Complacency cannot set in; consequently, I will have to increase my intensity and discipline until I advance another workable routine to see me through December which will be the next turning point in my recovery. (Stay tuned.) Another unavoidable variable is I’ll be coming home to a new place. The learning curve will have to be fast and steep. A new odyssey to be sure. I LOVE IT!
WEIGHT LOSS
The weight loss hasn’t stopped. I now weigh 188 lbs. or 85.5 kilos, for a total loss of 115 lbs. As you recall, my goal was to get to 185 lbs. by my departure date currently scheduled for September 1. With only three pounds left, the goal is very doable. As noted last week, however, I may be here for an additional week receiving another IVIG treatment in which case I’ll aim for 179 lbs. WOW!! That’s a total loss of 124 lbs. We shall see. The effort shall be made, whether the body responds is another issue.
An interesting consequence of the weight loss: I am swimming in all of my clothes. My shirts look like dresses. When I depart, I will donate all of my clothes to the hospital. There are a lot of patients here who simply don’t have anything to wear save the unappealing medical gown. Having something to wear will make the patients feel better about themselves.
I urge everyone to donate some clothing, including shoes, to the hospital.
DEPARTURE DATE
All of the doctors agree that another IVIG treatment will aid my continued recovery. The issue is one of coordination between the respective units or wards. Before the IVIG can be administered I need to be transferred to an unit equipped to handle the administration. I’ll know for certain on Monday whether the treatment will be administered before I leave, although it looks pretty certain. If so, I’ll be here through September 6, just two days shy of nine months since the onset of my GBS.
DEVELOPMENTS
By Monday, Forrest and I will be in our new digs just down the street from our current place. It’s bigger and in a very nice area of Sherman Oaks. It’s a newer building with elevators, a gym and underground parking for both cars. Forrest tells me one of the tenants is Robert Blake of Baretta fame (1975-1978). He also starred in In Cold Blood.
Always remember “It could be worse.” And “There’s always tomorrow.”
I leave you with a continuing proverb:
Exercise caution in your business affairs, for the world is full of trickery. But let not this blind you to what virtue there is; many persons strive for high ideals, and everywhere life is full of heroism. Be yourself. Especially do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment it is as perennial as the grass. Take kindly the counsel of the years, gracefully surrendering the things of youth.
In other words, be honest with yourself, be honest with others and appreciate the wisdom and discipline of your age.
Saturday, August 21, 2010
THE AGGREGATE EXPERIENCE - 08-19-10
EXTRA!
____________________
LATE EDITION
___________________________________________________
"THE AGGREGATE EXPERIENCE"
08-19-10
ARRIVAL
FASHION SHOW
Today was the big day for the 12th Annual Fashion Show “Midnight in Milan.” After getting measured by the girls I had a friend go to Macy’s where she picked out a great looking outfit. I’m down to a 40 waste (smaller but for the excess skin), not bad. She bought a dark brown Cuban style shirt, in large as opposed to double XX, with cream color linen pants. She also bought matching sox, a classic looking ensemble. All I needed was a tan fedora and cigar and I could have been a character on “Miami Vice.” My character’s name is “Don Francisco.” I love it.
The organizers asked me to speak about my condition and how I’ve handled my recovery. They didn’t have to ask twice. Because the CEO of Rancho would be there along with administrators, doctors, therapists and other hospital staff, I prepared a speech aimed at addressing many of the concerns raised in my blog, specifically premature discharge and the need for continued therapy without so much concern with budgetary constraints. In short, it would be cheaper to rehabilitate the stricken, such as myself, with the aim of becoming tax paying members of society rather than to refuse therapy and transform them into wards of the state and thus users of tax payer money. My concern was to express the concept without overly politicizing the issue. It took me two days to write a five minute speech. (I have included the text of the speech at the end of this article.)
It was great. We chose our own entrance music; no, it wasn’t the Godfather theme, rather I chose 2001 Space Odyssey with its rousing crescendo symbolizing of the rebirth of mankind. Setting up behind a black curtain the music began building to its recognizable thunder, the audience, getting the connection and appreciating the message, immediately started clapping and shouting; the curtain opened and I walked out to cheers from the medical staff and patients who saw me walk for the first time. It was emotional for me. I made it. I was walking.
The “L” shaped runway, bedecked with rose pedals, was raised about three feet off the ground with small theatre lights bordering its edges. I walked about fifty feet without my leg brace to the microphone. (This was the only second time I walked without my brace with the first time being the day before.) I so wanted to say, “I want to thank the Academy…” I ultimately came up with another “ice breaker.” After the speech I walked back to my chair, turned around, raised my arm, stretching out my crooked fingers which I still can’t fully extend and yelled, “So long and farewell!” HAH! The wave was photographed and used in news article filed in the Long Beach Telegram.
The speech was well received by both patients and staff. (I’ve attached two small video clips. The whole speech is being transferred to a DVD.) I said what the therapists and doctors wanted to say but couldn’t.
HORSEBACK RIDING
Last week I went horseback riding. At first I wasn’t concerned with my safety and the potential for getting hurt. After all, I rode for several years along the San Gabriel River when I was younger and have ridden over the years periodically; consequently, I felt comfortable atop a 1300 pound horse. Well, let me tell you, when you can’t stand the ground looks like it’s a twenty foot drop.
As you can see from the pictures I had to drive up a ramp with my power chair in order to reach the horse. The initial plan was to stand up into my walker and somehow drape my right leg over the horse’s back. Well, I’d have more success losing 100 lbs., duh, I already did that; you get the point: how in the hell was I going to swing my right leg over the horse’s back while standing on my left leg, a presumptive mistake at best.
The 1300 pound animal slowly approached the ramp led by a young female assistant. Standing next to me was the irreplaceable owner of the stable, Darlene, a cowgirl with a Capital “C” and an astute reader of body language whether it be animal or human. I stood up from my chair in the small area atop the ramp, about four feet above the ground. It could have been twenty feet, it didn’t matter, if I fell bones would break. With only inches on either side of me I slowly shimmied over to the waiting hoofed one a half inch at a time. After a few moments Darlene realized the impossibility of the task. She then began to prepare the “lift”.
The horse was sent out of the staging area while the lift was prepared for service. As the lift traveled along its dirty track a loud high pitch shriek filled the air which frightened the steed as he reentered the staging area; he bolted almost running over the leading assistant. At Darlene’s direction the assistant re-circled the area to refocus the horse’s attention away from the sound. The horse was visibly agitated. Darlene recognized the horse’s distress as well as my own. All I could picture was flipping backward over the horse’s butt as it galloped off into Western sunset, sort of like an old Roy Rogers scene. After a few reassuring words I felt better, I don’t know about the horse.
The lift wasn’t going to work. It was placed back into its protective metal case. The horse was no longer agitated. I was still standing waiting for something to happen. The sun was making me hot.
Darlene then suggested the obvious; just pick me up and place my bottom on the horse’s back. My trunk control is strong enough to stay atop the horse while my right leg is positioned. The whole mounting process is recorded on my blog.
WEIGHT LOSS
Over the past week I’ve lost another five pounds bringing my weight down to 191 lbs. for a total loss of 112 lbs. Before I leave here I want to get to 185 lbs.
DEPARTURE DATE
The plan is still September 1, however, there’s talk of keeping me here an additional week more to receive another round of IVIG.
Forrest and I will be in our new place by next weekend.
SPEECH
REHABILITATION
Hi, my name is Yancy Miller. As a kid I always dreamed about doing certain things in life; recovering from a rare condition the cause of which was unclear, the cure of which was unsure and how the medication administered worked, uncertain, and appearing in a fashion show while holding on to a walker with a woman holding on to my backside was certainly not on the list.
I have been hospitalized since Dec. 8, 2009, and at Rancho Los Amigos since Dec. 14, recovering from Gillian Barre Syndrome or GBS. GBS is an inflammatory disorder of the peripheral nerves outside the brain and spinal cord. Without warning I was left paralyzed from neck down within 24 hours of its onset. My life and family were literally turned upside down.
On December 7, I awoke to a normal day of work and play. On Dec. 8, I awoke to what would become a living hell where my life extended no farther than my ability to think and speak. That’s was the essence of my existence. What I was as a man, as an independent person became a prisoner in my own body. Even the most simplest of function was now in the hands of someone else. To be sure, the paralysis was mind numbing, but having to ask for help was a major source of my torture. There was no waking up from this nightmare. And when I did sleep, the nightmares became more hellish as my mind would take me to places I didn’t want to go.
I now walk and stand before you as a result of therapy, diet and rehabilitation.
As I look out into the audience I cannot help but notice the diversity of the attendees and patients. Each one of us comes here for different reasons, from different economic and educational backgrounds and from different ethnicities and cultures.
The level of diversity doesn’t stop with the patients, though. It is equally evident among the staff, from the doctors to the nurses to the therapists and supporting staff . . ., many regions of the world are represented under the roof of this Rehabilitation Center. Hell, we even have someone here from OHIO, my Erin.
Diversity aside, and in fact, despite the diversity, there is something more remarkable, more fundamental about Rancho which provides the basis for their continued success as a center for rehabilitation; there is a sense of purpose shared here which is the common denominator running through all of us. The sense of purpose is the deep rooted desire and orchestrated push between therapist and patient to recover from the physical blight which brought us together for this brief moment in time. Most everyone here knows how hard I have worked since I arrived here. But I couldn’t have done this alone, I couldn’t have done this without my therapists.
As therapists, you have to hold sacred a simple truism, recovery brings back independence. “I don’t want to ask for help!” Independence brings back pride and pride brings back the will to live. It’s that simple. That’s the driving force behind rehabilitation.
But someone has to first deliver the medical service, the rehabilitation: that someone is the therapist. You therapists are on the front line charged with the duty of effectively rebuilding the mind and spirit as well as the physical bodies of the injured ones. Without you, there would be no recovery. Without recovery there would be no rehabilitation. Without rehabilitation there would be no Rancho National Rehabilitation Center. Rancho would become merely a depository for society’s “misfits”, a way station before the individual’s final destination.
I am the product of what therapy can do. When I arrived, I weighed 303 lbs of dead weight unable to even touch my fingers together, or to roll over or sit up. Today I weighed in at 191 lbs. losing 112 lbs. My therapists, Erin, Jennifer, Heidi and Chris stepped up to the challenge and made it their respective goal to see me recover. I have to also mention the other therapists with whom I worked or just spoke to because each played a significant role in keeping me sane and wanting to come back for more. Please forgive me if I don’t call out your name, but I have to thank sweet Alice, insatiable Tim who is the only person I have ever met who can talk about food for a complete hour of therapy, Temple, Allana, Lisa, Eva, Becky, Jerry, Amanda and Kathy. Each one of you helped me in many ways.
But, I want to get back to two young beautiful women who have been with me since day one, Erin and Jennifer. They make Rancho special. To me they are why Rancho exists. There were times when it seemed nothing would work, where I would hit a wall, then Erin would think of some new approach and progress would be made. There were other times when the weight of the day was just too much and her simple look of reassurance would get me through the day. And it wasn’t fun: poor Jen has been slapped, hit, cut, and sweated on over the past eight months and still had a smile for me the next day.
To be sure, my recovery has been long and frustrating. I am a demanding person, I demand much from myself as I do from them. Erin never quit on me; consequently, I couldn’t quit on myself. It’s interesting; I wanted to work hard so I wouldn’t disappoint her. It worked and here I am.
The problem with all of this is that often the therapists have little leeway to provide the degree of therapy needed to effectuate the level of recovery possible for a particular patient. This leads to the patient being summarily discharged before he/she reaches their full recovery potential. I understand the economics of the situation, however, we are dealing with human beings who by their very nature want to reenter mainstream society and become productive again. We must not allow ourselves to view the practice of medicine as a managed health care assembly line allowing each station a prescribed amount of time to replace, mend or remove the defective part before the patient is moved on to the next station and ultimately out the door, irrespective of whether the tires inflate or the doors properly open and close.
You tell me, what’s better for society, to abandon care and relegate the individual to becoming a lifetime ward of the state, or to expend the time and effort to get them back as productive tax paying members of society rather than users of tax payer’s money.
When a decision has to be made regarding what would otherwise be a premature discharge, think about me. I was to be discharged 30 days after my arrival. Seven months later, look at me. To you therapists, isn’t this what’s it’s all about? To the administration, isn’t my recovery what Rancho Los Amigos Rehabilitation Center is all about? The answer is self evident. There simply is no argument.
In closing I want to thank P.A. Sally Davis, Gilbert Salinas and Judy Salazar. To say there is a debt of gratitude would be an understatement.
Thank you.
Always remember “It could be worse.” And “There’s always tomorrow.”
I leave you with a proverb:
Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should.
In other words, chill. Don’t be so hard on yourself. You’re better than you think you are.
____________________
LATE EDITION
___________________________________________________
"THE AGGREGATE EXPERIENCE"
08-19-10
ARRIVAL
FASHION SHOW
Today was the big day for the 12th Annual Fashion Show “Midnight in Milan.” After getting measured by the girls I had a friend go to Macy’s where she picked out a great looking outfit. I’m down to a 40 waste (smaller but for the excess skin), not bad. She bought a dark brown Cuban style shirt, in large as opposed to double XX, with cream color linen pants. She also bought matching sox, a classic looking ensemble. All I needed was a tan fedora and cigar and I could have been a character on “Miami Vice.” My character’s name is “Don Francisco.” I love it.
The organizers asked me to speak about my condition and how I’ve handled my recovery. They didn’t have to ask twice. Because the CEO of Rancho would be there along with administrators, doctors, therapists and other hospital staff, I prepared a speech aimed at addressing many of the concerns raised in my blog, specifically premature discharge and the need for continued therapy without so much concern with budgetary constraints. In short, it would be cheaper to rehabilitate the stricken, such as myself, with the aim of becoming tax paying members of society rather than to refuse therapy and transform them into wards of the state and thus users of tax payer money. My concern was to express the concept without overly politicizing the issue. It took me two days to write a five minute speech. (I have included the text of the speech at the end of this article.)
It was great. We chose our own entrance music; no, it wasn’t the Godfather theme, rather I chose 2001 Space Odyssey with its rousing crescendo symbolizing of the rebirth of mankind. Setting up behind a black curtain the music began building to its recognizable thunder, the audience, getting the connection and appreciating the message, immediately started clapping and shouting; the curtain opened and I walked out to cheers from the medical staff and patients who saw me walk for the first time. It was emotional for me. I made it. I was walking.
The “L” shaped runway, bedecked with rose pedals, was raised about three feet off the ground with small theatre lights bordering its edges. I walked about fifty feet without my leg brace to the microphone. (This was the only second time I walked without my brace with the first time being the day before.) I so wanted to say, “I want to thank the Academy…” I ultimately came up with another “ice breaker.” After the speech I walked back to my chair, turned around, raised my arm, stretching out my crooked fingers which I still can’t fully extend and yelled, “So long and farewell!” HAH! The wave was photographed and used in news article filed in the Long Beach Telegram.
The speech was well received by both patients and staff. (I’ve attached two small video clips. The whole speech is being transferred to a DVD.) I said what the therapists and doctors wanted to say but couldn’t.
HORSEBACK RIDING
Last week I went horseback riding. At first I wasn’t concerned with my safety and the potential for getting hurt. After all, I rode for several years along the San Gabriel River when I was younger and have ridden over the years periodically; consequently, I felt comfortable atop a 1300 pound horse. Well, let me tell you, when you can’t stand the ground looks like it’s a twenty foot drop.
As you can see from the pictures I had to drive up a ramp with my power chair in order to reach the horse. The initial plan was to stand up into my walker and somehow drape my right leg over the horse’s back. Well, I’d have more success losing 100 lbs., duh, I already did that; you get the point: how in the hell was I going to swing my right leg over the horse’s back while standing on my left leg, a presumptive mistake at best.
The 1300 pound animal slowly approached the ramp led by a young female assistant. Standing next to me was the irreplaceable owner of the stable, Darlene, a cowgirl with a Capital “C” and an astute reader of body language whether it be animal or human. I stood up from my chair in the small area atop the ramp, about four feet above the ground. It could have been twenty feet, it didn’t matter, if I fell bones would break. With only inches on either side of me I slowly shimmied over to the waiting hoofed one a half inch at a time. After a few moments Darlene realized the impossibility of the task. She then began to prepare the “lift”.
The horse was sent out of the staging area while the lift was prepared for service. As the lift traveled along its dirty track a loud high pitch shriek filled the air which frightened the steed as he reentered the staging area; he bolted almost running over the leading assistant. At Darlene’s direction the assistant re-circled the area to refocus the horse’s attention away from the sound. The horse was visibly agitated. Darlene recognized the horse’s distress as well as my own. All I could picture was flipping backward over the horse’s butt as it galloped off into Western sunset, sort of like an old Roy Rogers scene. After a few reassuring words I felt better, I don’t know about the horse.
The lift wasn’t going to work. It was placed back into its protective metal case. The horse was no longer agitated. I was still standing waiting for something to happen. The sun was making me hot.
Darlene then suggested the obvious; just pick me up and place my bottom on the horse’s back. My trunk control is strong enough to stay atop the horse while my right leg is positioned. The whole mounting process is recorded on my blog.
WEIGHT LOSS
Over the past week I’ve lost another five pounds bringing my weight down to 191 lbs. for a total loss of 112 lbs. Before I leave here I want to get to 185 lbs.
DEPARTURE DATE
The plan is still September 1, however, there’s talk of keeping me here an additional week more to receive another round of IVIG.
Forrest and I will be in our new place by next weekend.
SPEECH
REHABILITATION
Hi, my name is Yancy Miller. As a kid I always dreamed about doing certain things in life; recovering from a rare condition the cause of which was unclear, the cure of which was unsure and how the medication administered worked, uncertain, and appearing in a fashion show while holding on to a walker with a woman holding on to my backside was certainly not on the list.
I have been hospitalized since Dec. 8, 2009, and at Rancho Los Amigos since Dec. 14, recovering from Gillian Barre Syndrome or GBS. GBS is an inflammatory disorder of the peripheral nerves outside the brain and spinal cord. Without warning I was left paralyzed from neck down within 24 hours of its onset. My life and family were literally turned upside down.
On December 7, I awoke to a normal day of work and play. On Dec. 8, I awoke to what would become a living hell where my life extended no farther than my ability to think and speak. That’s was the essence of my existence. What I was as a man, as an independent person became a prisoner in my own body. Even the most simplest of function was now in the hands of someone else. To be sure, the paralysis was mind numbing, but having to ask for help was a major source of my torture. There was no waking up from this nightmare. And when I did sleep, the nightmares became more hellish as my mind would take me to places I didn’t want to go.
I now walk and stand before you as a result of therapy, diet and rehabilitation.
As I look out into the audience I cannot help but notice the diversity of the attendees and patients. Each one of us comes here for different reasons, from different economic and educational backgrounds and from different ethnicities and cultures.
The level of diversity doesn’t stop with the patients, though. It is equally evident among the staff, from the doctors to the nurses to the therapists and supporting staff . . ., many regions of the world are represented under the roof of this Rehabilitation Center. Hell, we even have someone here from OHIO, my Erin.
Diversity aside, and in fact, despite the diversity, there is something more remarkable, more fundamental about Rancho which provides the basis for their continued success as a center for rehabilitation; there is a sense of purpose shared here which is the common denominator running through all of us. The sense of purpose is the deep rooted desire and orchestrated push between therapist and patient to recover from the physical blight which brought us together for this brief moment in time. Most everyone here knows how hard I have worked since I arrived here. But I couldn’t have done this alone, I couldn’t have done this without my therapists.
As therapists, you have to hold sacred a simple truism, recovery brings back independence. “I don’t want to ask for help!” Independence brings back pride and pride brings back the will to live. It’s that simple. That’s the driving force behind rehabilitation.
But someone has to first deliver the medical service, the rehabilitation: that someone is the therapist. You therapists are on the front line charged with the duty of effectively rebuilding the mind and spirit as well as the physical bodies of the injured ones. Without you, there would be no recovery. Without recovery there would be no rehabilitation. Without rehabilitation there would be no Rancho National Rehabilitation Center. Rancho would become merely a depository for society’s “misfits”, a way station before the individual’s final destination.
I am the product of what therapy can do. When I arrived, I weighed 303 lbs of dead weight unable to even touch my fingers together, or to roll over or sit up. Today I weighed in at 191 lbs. losing 112 lbs. My therapists, Erin, Jennifer, Heidi and Chris stepped up to the challenge and made it their respective goal to see me recover. I have to also mention the other therapists with whom I worked or just spoke to because each played a significant role in keeping me sane and wanting to come back for more. Please forgive me if I don’t call out your name, but I have to thank sweet Alice, insatiable Tim who is the only person I have ever met who can talk about food for a complete hour of therapy, Temple, Allana, Lisa, Eva, Becky, Jerry, Amanda and Kathy. Each one of you helped me in many ways.
But, I want to get back to two young beautiful women who have been with me since day one, Erin and Jennifer. They make Rancho special. To me they are why Rancho exists. There were times when it seemed nothing would work, where I would hit a wall, then Erin would think of some new approach and progress would be made. There were other times when the weight of the day was just too much and her simple look of reassurance would get me through the day. And it wasn’t fun: poor Jen has been slapped, hit, cut, and sweated on over the past eight months and still had a smile for me the next day.
To be sure, my recovery has been long and frustrating. I am a demanding person, I demand much from myself as I do from them. Erin never quit on me; consequently, I couldn’t quit on myself. It’s interesting; I wanted to work hard so I wouldn’t disappoint her. It worked and here I am.
The problem with all of this is that often the therapists have little leeway to provide the degree of therapy needed to effectuate the level of recovery possible for a particular patient. This leads to the patient being summarily discharged before he/she reaches their full recovery potential. I understand the economics of the situation, however, we are dealing with human beings who by their very nature want to reenter mainstream society and become productive again. We must not allow ourselves to view the practice of medicine as a managed health care assembly line allowing each station a prescribed amount of time to replace, mend or remove the defective part before the patient is moved on to the next station and ultimately out the door, irrespective of whether the tires inflate or the doors properly open and close.
You tell me, what’s better for society, to abandon care and relegate the individual to becoming a lifetime ward of the state, or to expend the time and effort to get them back as productive tax paying members of society rather than users of tax payer’s money.
When a decision has to be made regarding what would otherwise be a premature discharge, think about me. I was to be discharged 30 days after my arrival. Seven months later, look at me. To you therapists, isn’t this what’s it’s all about? To the administration, isn’t my recovery what Rancho Los Amigos Rehabilitation Center is all about? The answer is self evident. There simply is no argument.
In closing I want to thank P.A. Sally Davis, Gilbert Salinas and Judy Salazar. To say there is a debt of gratitude would be an understatement.
Thank you.
Always remember “It could be worse.” And “There’s always tomorrow.”
I leave you with a proverb:
Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should.
In other words, chill. Don’t be so hard on yourself. You’re better than you think you are.
Wednesday, August 18, 2010
Video clips - Riding the Bucking Bronco
Just click on the photos to engage the video clips. Check out the video of me mounting the horse. Darlene, the gal helping me did a great job of assuring me and calming the horse.
THE ART OF GRACEFULNESS
This is what happens when you're too weak to stand on your own. Let me when you can't walk, the ground looks extremely far. But we successfully mounted and rode the steed.
Monday, August 16, 2010
Friday, August 13, 2010
Walking 08-13-10 - Trough Walker
Now we are down to one person watching me. A big difference from the first walk.
Thursday, August 12, 2010
THE AGGREGATE EXPERIENCE - 08-12-10
EXTRA!
____________________
MORNING EDITION
_________________________________________________________
"THE AGGREGATE EXPERIENCE"
08-12-10
QUICK UPDATE
This is going to be short and sweet. I now weigh 196.1 lbs or 89.1 kilos for a total loss of 107 lbs. or 48.6 kilos. I still have 21 lbs. to hit my target weight. The interesting fact is I’m not riding the arm/leg bike as much as before. Just prior to my transfer to this unit two weeks ago I was exercising on the bike two hours a day. Last week I rode about five hours in total, far short of my usual mark. I will have to pick it up over the next three weeks to insure continued weight loss. I want to hit 185 lbs before I leave here.
UPCOMING EVENTS
On September 18, 2010 Rancho is holding a track event for patients. They have a 5k event for the more capable runners and a 1k for the more restricted individuals: 1 Kilometer or 0.62 Miles. I will be entering the 1k event where I will be “walking” with a walker. It’s not much but it’s a start.
Next week they’re holding a fashion show where the patients will walk or roll down the “runway”. I’ve been talked into entering but the only problem is I don’t have anything to wear. HAH! Everything is too big. Today the girls will measure my waist while I’m standing and I’ll have a friend go shopping for me. It should be pretty cool to get dressed in something other than shorts and a pullover.
And on Monday I’m scheduled to go horseback riding. I used to ride horses a lot when I was younger and love to ride. This should be a blast.
Despite all of the gaiety and frolic, I am still working hard at maintaining my exercise and dietary regimen. I now have less than three weeks here and I have to make every minute count. The pressure is on with the two week extension. I have to perform. I love it!
Remember “It could be worse.” And “There’s always tomorrow.”
I leave you with a proverb:
If you compare yourself with others, you may become vain or bitter; for always there will be greater and lesser persons than yourself. Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.
Thank you.
____________________
MORNING EDITION
_________________________________________________________
"THE AGGREGATE EXPERIENCE"
08-12-10
QUICK UPDATE
This is going to be short and sweet. I now weigh 196.1 lbs or 89.1 kilos for a total loss of 107 lbs. or 48.6 kilos. I still have 21 lbs. to hit my target weight. The interesting fact is I’m not riding the arm/leg bike as much as before. Just prior to my transfer to this unit two weeks ago I was exercising on the bike two hours a day. Last week I rode about five hours in total, far short of my usual mark. I will have to pick it up over the next three weeks to insure continued weight loss. I want to hit 185 lbs before I leave here.
UPCOMING EVENTS
On September 18, 2010 Rancho is holding a track event for patients. They have a 5k event for the more capable runners and a 1k for the more restricted individuals: 1 Kilometer or 0.62 Miles. I will be entering the 1k event where I will be “walking” with a walker. It’s not much but it’s a start.
Next week they’re holding a fashion show where the patients will walk or roll down the “runway”. I’ve been talked into entering but the only problem is I don’t have anything to wear. HAH! Everything is too big. Today the girls will measure my waist while I’m standing and I’ll have a friend go shopping for me. It should be pretty cool to get dressed in something other than shorts and a pullover.
And on Monday I’m scheduled to go horseback riding. I used to ride horses a lot when I was younger and love to ride. This should be a blast.
Despite all of the gaiety and frolic, I am still working hard at maintaining my exercise and dietary regimen. I now have less than three weeks here and I have to make every minute count. The pressure is on with the two week extension. I have to perform. I love it!
Remember “It could be worse.” And “There’s always tomorrow.”
I leave you with a proverb:
If you compare yourself with others, you may become vain or bitter; for always there will be greater and lesser persons than yourself. Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.
Thank you.
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