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.

Mother's Finest - Dis Go Dis Way Dis Go Dat Way (1977)

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.

AT WORK WRITING THE BOOK!

WRITING THE UPCOMING BOOK: "HOW TO 100 LBS. WHILE SITTING IN A CHAIR! (AND NEVER TAKING A STEP!)

Sly and the Family Stone - Dance To The Music

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!!

nO LONGER USING THE BIG TROUGH WALKER. I HAVE GRADUATED TO THE NEXT PHASE, THE SMALL WALKER. MORE PRESSURE IS PLACED ON MY LEGS AND BODY AND AWAY FROM MY ARMS AND BACK, MAKING THE WALK MORE PRECARIOUS.

VIDEO CLIP OF SUCCESS @ 25 INCHES! 10-29-10

WE HAVE IGNITION!. SUCCESS!!YESSIREE!

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.

VIDEO CLIP OF ANOTHER TRY @ 25 INCHES. 10-29-10

VIDEO CLIP OF ANOTHER TRY @ 25 INCHES.

TRYING FROM 25 INCHES 10-29-10

THE FIRST OF SEVERAL ATTEMPTS FROM 25 INCHES. THE DEGREE OF DIFFICULTY IS BECOMING APPARENT.

26 INCHES 10-29-10

I'VE DROP THE HEIGHT DOWN TO 26 INCHES. I'M LIVING DANGEROUSLY!!

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

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.


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.