THE JOURNEY CONTINUES! 10-27-10

EXTRA!
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AFTERNOON EDITION
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"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.