Post 58 - Another Concession

If you have spent your valuable time actually reading some of the many entries that make up this blog, you’ve noted a theme that pops up every now and then.  You may recall that I complain that I’ve had to grudgingly rely on an increasingly complex number of appliances – just to carry out my daily activities. 

Back so many years ago – it’s only been about 5 years – that MSA became a reality for me, I’ve gone from nothing to a cane, to a walker, to a motorized scooter, to a travel wheelchair, to a full-sized wheelchair, and now to the latest piece of equipment. 

Before I write about this latest addition to my artificial mobility, I have to admit that the last few items have been much easier for me to accept than the first.  The most difficult was actually the first, the use of a cane.  I guess that’s because the cane was the first outward sign that MSA was for real and that it was likely going to lead to its inevitable conclusion. 

Now that I’ve got you curious about what this latest addition could be – I am the happy new owner of a slightly used, 2005 edition of a Pride “Jazzy Ultra” motorized wheelchair which gets me around the house in no time – as long as I stop hitting doors and walls.  New, this chair - which even comes with a cup holder – retailed for around $6000.  Fortunately, I paid only a fraction of that because it was gently used.  I’ll get the hang of driving it soon – until then, you better watch your toes when I’m around.

Post 57- Another Post, in Less Than A Week - How Come?

I usually try to spread out these posts to once a month; and honestly, there are months when I really have to work at coming up with a topic of interest. Occasionally the opposite is true; once in a while I come across several stories or personal happenings when I have the pleasant task of picking what to include now and what to put off until a later post. Recently, however, I became aware of something that not only deserved its own post, but warranted my very first letter of support directed at a congressperson – actually several.

I’ve mentioned a number of times in this blog about a support group I belong to that contains much valuable information and news about upcoming drug tests or recent pharmaceutical releases(shydrager@yahoogroups.com). As long as I’ve  belonged to this user group I read about the use of a drug called Droxidopa, which the Japanese have used  for years to safely treat neurogenic orthostatic hypotension (NOH).  Since just about all MSA patients suffer from NOH (a significant drop in low blood pressure upon standing; causing light-headedness and risk of fainting), it seems that the rapid approval of Droxidopa by the FDA is a “no-brainer.” Instead, the FDA has been demanding more tests before approval, despite years of successful usage in Japan, a country with rigid pharmaceutical controls. Chelsea Pharmaceuticals, the U.S. company hoping to bring this drug to our market has established an action group called the Treat NOH Now Coalition to encourage rapid action to evaluate Droxidopa.  The Coalition’s web site www.treatnohnow.com contains a thorough explanation of their goals as well as a complete definition of the problem and a place to compose and send off an email letter of support.   

Enclosed below is a copy of the email message I recently sent off in support of the Coaliton (my premier letter to legislators).  You may wish to use it as a guide if you plan to email one.  Thank you for taking the time to learn about NOH.

"My name is Steve Steidel, I live in Punta Gorda FL and I’m a retired police officer from Suffolk County, NY. I’ve been diagnosed with a rare neurological disease called Multiple Systems Atrophy (MSA) which has been described as a ‘”fast-moving” Parkinson Disease.  On average, a person with MSA survives 8 years after diagnosis (my diagnosis was made in 2009 so time runs short). I, like most MSA patients, suffer from neurogenic orthostatic hypotension (NOH) which causes us to experience symptoms of dizziness, lightheadedness and/or fainting when we sit or stand up. For many with NOH, including me, these symptoms are persistent and interfere with our everyday activities.

I am bothering you today because the only U.S. Food and Drug Administration (FDA) approved treatment at this time is Midodrine; however, this agent is not yet proven to affect symptoms associated with the disorder and it causes a range of undesired side effects. Midodrine faces FDA withdrawal from the U.S. market if it does not demonstrate symptomatic benefit with its two ongoing studies by 2014. That’s why new treatment options need to be made available now.

Therefore, this letter’s objective, while it may be somewhat self-serving, asks you to fulfill your role as a member of Congress by urging the FDA to accelerate review of NOH treatments and support the goals of the Treat NOH Coalition who seeks to advance the development and approval of treatments for NOH.  These goals of the Coalition are spelled out ohttp://www.treatnohnow.com

Thank you for your time and attention to this correspondence:"

Post 56 - Just How Fat Is This Guy Gonna Get?

When I started this humble blog in August of 2009, I weighed somewhere around 150 pounds, the same weight I carried for many years, especially since replacing my highly caloric lunches with a cup of yogurt and an apple. Of course, I was always on the go somewhere, in particular since landing a training consultant’s job which involved lots of travel and prep work.      

 At the beginning of 2012, after about five years or more of dealing with the effects of this damned disease, I noticed a continual weight gain until today I tip the scales at a robust 175 pounds, the heaviest I’ve ever been.

 Some of this excessive poundage I can attribute to a loss of mobility which has caused me to spend more of my time in a wheelchair BUT, when the gain began to worry me, about 10 pounds ago, I watched my diet more closely and found that my intake was still quite moderate.  Fran, my resident nutritionist, who, while using the techniques of Weight Watchers, has shed about 25-30 pounds, which is suspiciously exactly what I’ve gained, can attest to my portion control and other dietary restraints.  Yet, still I keep on gaining!

 My “girth enhancement” is becoming more problematic in a number of ways. First, Financial – Fran has bought me a bunch of “big boy” clothes based around size 36 pants and XL tee shirts to accommodate my increasing waist size and expanding pot belly.  Second, Physical – extra pounds, in particular around the middle, are very uncomfortable, especially when trying to get comfortable in a wheelchair or other piece of standard furniture – the “’belly” always seems in the way. And third, Psychological – simply put, I dislike this extra weight, don’t like how it looks, and am anxious to lose it.

 I took a look at the side-effects of the medications I’m taking and found that one, Florinef, (fludrocortisone) which is prescribed for low blood pressure, helps raise one’s pressure thru the retention of salt and water – in fact, some people mention the Florinef ”fluff” which describes unwanted weight gain.  I’ll discuss this with my GP, but I already know what he’ll say.  “You’ll need the extra pounds in case you’re hospitalized from a fall or with aspiration pneumonia and are likely to lose weight.” A big help, he is.

So maybe I’m stuck with these extra 25-30 pounds or maybe I can shed some or all of them.  I’ll keep you posted. If any other MSA’ers would like to comment, I’d appreciate hearing from you – either comment here or e-mail me privately at ssteidel@comcast.net

 

Post 55 - You Want Me To Put That Where?

The following is a conversation that took place in my urologist’s office during my last visit a few weeks ago.  This is the same specialist who has seen me for at least five years and has treated my neurogenic bladder with different medications, experimenting until he found the one that worked best and had the fewest side-effects. Right now, Proscar seems to working fairly well.  Based on how those prior visits went, I expected more of the same, perhaps discussing the merits of some new medication. Boy, was I ever wrong!

Doctor:                On each office visit over the years, we’ve taken a scan of your bladder to determine if you are retaining any urine.  We’ve discovered the amount you’re retaining has increased to an unacceptable level.

Me:                       That’s probably not a good thing.

Doctor:                No, it’s not – in fact, when your bladder retains urine it increases the chance of a nasty bladder infection or the possibility of a troublesome kidney problem.  Believe me you don’t want either of those bad boys.

Me:                      Sounds serious – so I guess it’s time to change the medication again?

Doctor:                I don’t think so.  We’ve tried all the drugs available. Unfortunately, there is no medication that helps the bladder empty out. You’ll have to get rid of this excess MANUALLY, through use of a disposable CATHETER.

Me:                       You gotta be kidding!  How do I manage that?   

Doctor:                On your way out today make an appointment with my nurse – she’ll show you what to do.

Me:                      Are you sure you read the scan right?

Doctor:               Don’t be such a baby. (He didn’t really say that, but I know he was thinking it)

 

So three days later, there I am with Fran, my wife and super caregiver, back in the office talking with a nurse young enough to be one of my daughters and she’s keeping a straight face while demonstrating  everything involved in self-catheterization.  And I kept a straight face, which was especially challenging when she asked about what size catheter to start with.  She must have noticed the confused look on my face; small? medium? large? (later I learned that catheter sizes start at 14” long and go up in length to around 19”). The nurse explained that since all you’re doing is draining the bladder, smaller is better – the less the likelihood of an obstruction.  Definitely don’t want any obstructions, no sir!

 

I wasn’t prepared for the next part of the demonstration which by now seemed like a final exam I had to successfully complete to obtain a passing grade in “catheter class.” If you guessed I had to actually perform a catherization on myself right there in front of Fran and the nurse- you’d be right.  There’s no need to get specific about what came next except to say that modesty and MSA are mutually exclusive.  In other words, if a person successfully completes “catheter class” he or she must be prepared to surrender any remaining modesty and dignity.

 

My new, twice daily task really isn’t so bad after all. Just a few minutes each morning and at bedtime and I’m “good not to go” for several hours and I usually sleep the night thru.

Now if they could better prepare you for the final exam.

Post 54 - A Collective Apology to at Least 80 People

I should include a photo of myself on this blog post so everyone could see how red my face is right now. I’m embarrassed because I just discovered that more than 80 people have left messages for me, mostly very supportive ones (except for the Mr. Grab Bar representative who must prowl blogs like this hawking his products) and I, as the moderator, had to approve them so they’d appear on the blog and I could answer any questions. Sadly, some of these comments, which I didn’t see until today, go back to early 2010 (now my face is really red).

In a feeble, somewhat belated attempt to rectify these mistakes, I am diligently re-reading each comment and answering all those who require one. When finished, the comment will appear with the original post. So, if you’ve left a comment, please be patient – I’ll acknowledge your remarks soon.

I appreciate everyone who has taken the time to offer a comment or ask a question on this blog. From what I have learned, this blog has been especially helpful to those people who have contemplated stem cell therapy, either at X-Cell in Germany or somewhere else in the world. I sincerely regret this goof and promise it won’t happen again – I don’t look good in RED!

Post 53 - It Could Easily Be Worse

I bet if a survey was taken of all MSA sufferers, most, if not all of us, would admit to spending some time when we really felt sorry for ourselves and wondered why we were singled out in such a small percentage of the population, (roughly 3 people in every 100,000) to contract MSA. Certainly, I’m no different than all other MSA’ers and have had my share of “rough patches.”

When I occasionally hit those patches, one of the things that puts it all into perspective for me is a visit to the MSA Support Group’s Forum (shy-drager.org) where I can read the comments, experiences and suggestions of other MSA’ers or their caregivers.

For example, whenever I’m feeling down about my limited mobility and my need for a wheelchair or a power scooter to get around, I read about someone who spends most of his/her time in a bed, being able to get up for only brief periods into a special recliner, when I realize that I too could be bed-bound and, I understand - it could easily be worse.

Next, I’ve always prided myself on having neat handwriting and printing, and now I can’t write legibly anymore and Fran has to fill out everything for me. It’s easy to feel sorry for myself, then I read about those poor souls who need a writing tablet or a special communications device just to list their needs or express their thoughts and I understand how - it could easily be worse.

And, when I complain about Fran cutting my food into small, bite-sized pieces to aid my swallowing, I read about people who can only ”eat” bland paste through a stomach feeding tube, so they don’t aspirate food particles into their lungs. The reality that some MSA’ers can’t even taste basic foods also makes me realize how – it could easily be worse.

So I guess what this blog post is encouraging for all MSA’ers, especially those of us that need an occasional “dose of reality,” don’t hesitate to visit shy-drager.org and sign up to start receiving messages from people who may guide and otherwise help you handle MSA so – it doesn’t have to be worse.

Note: There is a “link” to the Shy-Drager Support Group under Web Sites in the right margin of this blog.

Post 52 - Be Careful What You Wish For

Post 51 lamented the fact that I was pretty much housebound while my power scooter was in the shop getting some needed repairs. The overhaul even included a new set of batteries so, needless-to-say, I was anxious to resume my exploits, which included twice a day walks of man’s best friend, my 7-yr-old Shih Tzu, Chico (he walks, I ride). At this point, I should mention that the day before I had resumed my pool exercises, which basically involved me flailing around for about a half an hour. Boy, am I out of shape!

After a few uneventful Chico-trips with the newly energized scooter, yesterday I decided to take him on a different path, intended to avoid the sun and heat. All went well until he decided to climb a small incline where he promptly answered nature’s call. As a good neighbor, I came equipped with necessary bags and tissues to clean things up. All I needed to do was drive the scooter up the small hill to pick up the item in question and reverse it back to the brick walkway.

The trouble began when I backed-up the scooter on the walkway to make a running start up the small slope so it would not get bogged down in the somewhat tall grass. Now, you may have guessed what happened next, which seems comical now but was not so funny while it was unfolding. Up the incline I charged - only to have the rear wheels start spinning furiously when they hit the tall, still damp grass. Since the rear-end had no traction, the front-end rose up like a bucking bronco, and promptly tried to shake me off. A scooter has two small, safety wheels which are supposed to prevent back-flips and, which would have worked as planned here if they did not sink into the damp earth. So, next thing I knew, I was lying on my back next to an upturned scooter. Meanwhile, Chico, instead of playing the Lassie role and bringing help, had headed off down the path to sniff the flowers and other neat smells. Also, every time I tried to get up and right the scooter, my weakened, swimming-exhausted legs, would make me fall over again and each fall would bring me closer to our lake containing at least two gators.

I also realized I could not call out for help since, with the shape my voice is in, anybody who heard me would have thought some animal was caught in a trap and basically ignored me – I would just have to wait until somebody walked by. I have come to the conclusion that an injured party could die and possibly decay before some other dog-walker might stumble across him.

So after about a half-hour of waiting, and realizing I had about as much chance for being happened upon as being hit by a meteor (wait, the way my luck has been going) I summoned up what little strength I had remaining and with scraped, bleeding knees, finally pulled myself upright, re-assembled the scooter and headed to collect Chico, who had strolled about 100 yards away where he eyed me with a “where you been all this time” look. The “package” will have to wait – like I’m ever going to take that path again. And yes – guess who forgot his cell phone?

Post 51 – (Finally) Getting A Little of My Mobility Back

My last post, #50, described a miserable day I was having and how, in particular, my power scooter had developed a mysterious ailment that caused it to start up fine, but stop scooting when it reached the furthest point from my home; and how I had to push it (with my dog, Chico, along for the ride) back home again. I finished that section of the blog by optimistically stating I was awaiting a return phone call that very afternoon from the scooter repairman. That phone contact was actually made several days later when we finally spoke to the technician and was asked to bring the scooter into the shop for service - which isn’t an unreasonable request until you realize the scooter needed to be disassembled into “five manageable sections” the heaviest being 35 lbs. That’s all well and good if you’re a guy who can stand un-aided, or a woman who’s taller than 5 feet, neither of which describes Fran or me. Finally, with the help of Ray, my ever- obliging neighbor, we got the scooter in our Hyundai Tucson for the short trip to the shop. Imagine my embarrassment when a mature woman employee,, not much bigger than Fran, took the scooter out of the car singlehanded and brought it in the shop; where it was destined to stay for about a month until what turned out to be a somewhat unique problem was diagnosed and the proper replacement part was obtained. Needless-to-say, I felt like a prisoner for that month, pretty much housebound for the entire time. The scooter is back now and Chico is once again on his twice–daily walks, whether he wants to or not. In fact, that’s what we are about to do in a few minutes. Now,where is that darned dog?

Post 50 - One of Those Days

Things have been going along pretty well lately. I’ve taken no falls, there haven’t been any hurry-up trips to the emergency room and my medicines seem to be doing their job. Everything considered, I’ve been getting along fine, which may have led to some complacency. I should have realized that Murphy’s Law (if it can go wrong - it will go wrong) was getting ready to pay me a visit.

Now that I’ve got your attention, you’ve got to use some imagination for the rest of this story. Picture a bright, sunny Florida morning, with the temperature just starting to heat up. Now picture me on my powered scooter taking the dog for a walk, like I do most mornings (actually, I ride and Chico walk & runs alongside). On this particular morning, we’re making a slight detour to mail a letter when the scooter stops scooting. There I am with a basically dead machine trying to control a dog who wants to go explore new territory and me without a cell phone to call for help. No alternative other than to corral Chico onto floor of the scooter and start pushing the several hundred yards back home, which I did, but very slowly (at least Chico thought the ride was fun). Naturally, once back home, the scooter began working properly (only to malfunction the next day). We’re currently waiting for the serviceman. Lesson learned: always carry a cell phone when taking these excursions!

You’d think that was enough excitement for one day but Murphy wasn’t done with me.

Later that evening, I was catching up on some e-mails when Fran called that it was time to eat. Normally, I switch from my desk chair (with rollers) to my wheelchair with no problem – not tonight. I started to get out of the desk chair when it decided to roll backwards and I went along with it. Instead of going back and sitting in the desk chair, I had started to make the transfer so I’m in “no-man’s land,” half-way between both chairs. Next thing I knew I was falling toward a glass-topped table I use to hold all my excess stuff. The shattering glass must have made the worst noise because Fran came running with towels to deal with what she was sure was a bloody mess. Luckily, I landed on an old keyboard I had on the table and not on the glass. Scary – but no injury. Lesson learned: try to stay off anything with wheels!

Overall lesson learned: if possible, go straight to the safety of your bed if you sense a Murphy’s Law day shaping up!

Post 49 - Friends & Family: The Best Medicine

I usually fill these pages with information about how I try to cope with the symptoms of MSA and the various ways I deal with day-to-day challenges. This post will be somewhat different because I recently underwent an experience that proved to have some unique results.

I guess I’ve been feeling sorry for myself lately because of the all-around deterioration in my condition. Life in a wheelchair, difficulty having oneself understood, and being dependent on others for just about everything, can really “bum you out.” Now add to that the fact that another birthday (my 68th) had come was making me feel a little depressed.

Fran must have sensed my change in mood because, along with everything she has taken on, she planned a surprise birthday party for me. Well, not really a surprise. To answer my questions about why all the party goods and extra foodstuffs were suddenly appearing in our pantry, she told me a few neighbors and friends were going to help me celebrate – nothing special. Imagine my surprise when I was wheeled into our clubhouse to find 35 friends and relatives – some of whom I haven’t seen for years.

What a sure way to shed the blues! I spent most of the evening talking with everyone in attendance – some of whom travelled from as far away as New York. I noticed as the night went on that my voice became stronger and easier to understand. I was even able to eat the delicious paella without the usual throat constriction.

So what did I learn? First, Fran can sure throw a party, especially one that is therapeutic, as well. Next, the Fenoy/Baldwin families can sure make outstanding paella, along with a bunch of tasty appetizers. Then, who knew our guests would make so many incredible desserts. Nobody left this party hungry! Lastly, many thanks go to Fran and everyone who shared this wonderful evening either by attending or by sending one of the many birthday cards or electronic greetings.

I should also say that the days of feeling sorry for myself are over. How can I feel down when I realize that so many wonderful friends and relatives are always there to lend support?

As I told everyone that night, when I blew out my candle, “This was my best birthday ever. What say we do it again next year?”

Post 48 - "No Sweat"

Usually, it’s a good thing to hear someone use the term, “no sweat” because it means that their task has turned out to be easier than expected or not so hard after all - a real ”piece of cake.”
Unfortunately, the phrase “no sweat” has a far different connotation to most MSA sufferers – a fact that I was vividly reminded of on Saturday, March 31.

Let me make it perfectly clear – I’m a big baseball fan - so when our condo community announced that they had tickets available for a Tampa Bay Rays – Boston Red Sox Spring Training game nearby in Port Charlotte, I was quick to sign up for tickets for me and Fran (who, like me, has become a real Rays fan) and two friends. Like much of this winter, yesterday’s weather turned out to be mostly sunny and warm. Our seats, which included lunch, turned out to be in full sun in the right field picnic area.

After spending most the afternoon in the full sun, we left the game after about 7 innings, dropped off our two friends and drove home. Once there, Fran remarked how red I was and then, when she got close to me, how my whole body was radiating heat. Like most MSA’ers, my internal thermostat is out of whack so I can’t tell if I’m overheating; plus – I don’t sweat like everyone else. However, by now I was starting to feel the heat myself and was concerned if I didn’t cool down, I was headed toward some form of heat stroke. So into a cool shower I went for about ten minutes. During that time I could feel myself rejuvenating and returning to my type of normal.

Another MSA lesson learned – almost the hard way. Always beware of prolonged exposure to heat. Just because there’s no sweat dripping down your forehead, it doesn’t mean you don’t need to take all precautions. In fact, no matter where someone with MSA may live - be alert to any temperature extreme. BTW, the Rays and Sox played to a 7-7 tie.

Post 47 - Breakng Up is Hard to Do *

After 46 entries to this blog dating back to August of 2009, I had just about run out of topics when something unusual happened a few days ago which has provided me with a whole bunch of fresh material.

Last Tuesday was an unusually busy day for me: first a car trip to a town about 15 miles away to check out a power wheelchair, then lunch at a local restaurant, a return home to clean up in preparation for a monthly Condo Board meeting where a proposal of mine was to be discussed.

The meeting began promptly at 4 pm and progressed as usual. The next thing I remember was coming around in the ER of our local hospital. I remembered bits and pieces of the meeting but nothing of what took place afterward or going to or being treated in the ER. Fran tells me I was exhibiting most of the classic signs of a stroke, except the numbness - but definitely the slurred speech (more than usual), the forgetfulness, the blank stare, and a lack of awareness about one’s surroundings. After comprehensive blood tests and a CAT scan (neither of which I remember) and a call to my GP by the ER doctor, I was sent home with an order to see my GP soon to evaluate what happened.

My GP saw me yesterday morning and he did a full neurological workup that, along with the tests at the ER, pretty well ruled out a stroke. What probably happened, and why I titled this entry, ‘Breaking Up is Hard to Do’, is because I forgot to refill my prescription for Paxil and decided, on my own, to replace it with a some of my surplus supply of Citalopram which is in the same SSRI family as Paxil. Naturally, I didn’t check with my GP first, or I would have learned that Paxil is very “hard to break up with.”

BTW – My GP has written me an order to refill the Paxil which I have already filled and starting taking. Hopefully this foggy sensation, which comes and goes, will clear up completely. I’ll report back next entry.

Note:(4-6-12) Concerning Post 47 - I've resumed taking the prescribed dosage of Paxil and everything is back to normal. Lesson learned!
*My apologies to Neil Sedaka, the Julliard graduate and popular singer from the 60s and 70s who twice had a Top 40 hit with a song of this same name.

Post 46 - Some Things I'd Like to Change

Having MSA means adapting to many life-altering changes – all of which require varying degrees of effort on the patient’s part. Some of these changes alter one’s life in the extreme - like difficulty swallowing, while others - like being easily startled, amount to nothing more than inconveniences. Whether major or minor, each symptom – and the patient’s response to it, has a life-changing effect. While I’m aware of many changes I’ve had to make over the past few years, there are several I wish would have turned out differently.

First, I really wish I had better balance, at least good enough to allow me to take a walk without the risk of falling. I really miss one of life’s little pleasures, especially since my condo, and, in fact, the whole city is so conducive to walking. It’s just not the same in a powered scooter or wheelchair.

Next, I’d like my voice back the way it was. Right now I’ve been reduced to a series of mostly unintelligible grunts and other noises. I can be understood, but it really takes a lot of very tiring effort to do so.

I also want my penmanship back, especially my signature which is now just about unrecognizable. I used to pride myself on my legible and neat handwriting – now it’s nothing but chicken scratch that even I can’t understand.

I would really appreciate some more manual dexterity. I’d really like to tie my shoes again and button my shirts without relying so much on Fran (who never complains or makes me feel disabled). Maybe I’d even be able to type one of these posts without making so many mistakes and taking so long time to correct it.

I’d like to change lots of other things while I’m at it but they’ll have to wait for another time – I don’t want to seem too greedy.

Lastly, Happy Valentine’s Day to all the wonderful girls in my life!

Post 45 – Another MSA Accommodation

It wasn’t a Christmas present; its arrival during the Holidays was merely coincidental.

It seems that my 4-wheel walker – the same trusty appliance that has helped keep me reasonably upright for quite some time has been falling down (no pun intended) on the job. Even with the aid of the walker, I’ve been experiencing an increasing number of stumbles and falls, especially over the past few months. I’ve mostly landed on my left side – so far resulting in bruised and sore hips and elbows - but luckily nothing worse. Of course, it’s only a matter of time that my luck runs out and I do some serious damage, like a broken hip or leg, and sustain the side effects - like pneumonia - that go with them. After some gentle prodding from Fran and a difficult night of using a small-wheeled transport chair to go out to a local restaurant, I reluctantly agreed to look into a full-sized wheelchair.

My first , and what turned out to be my only stop, was to Craig’s List where I came across a light-weight Invacare “Patriot” model, supposedly in great shape since the owner claimed it was only used a few weeks. Before driving the 30 miles necessary to see the chair firsthand, I did a fast comparison check online and found the asking price ($125) was well below that of similar chairs in near-new condition ($650). So, with my daughter Deb at the wheel, I took a Christmas Eve day trip to Ft. Myers to check it out.

As advertised, the chair looked like it had hardly been used. I “tried it on for size” and was pleased to find the chair had originally been adjusted for a user about my size – only a little shorter – requiring an easy foot pad adjustment. Lastly, Deb was successful in sliding the chair into the back of our Hyundai Tucson. Fran, with my help if she lets me, should be able to manage. Within 10 minutes we were heading home with my purchase. Clearly it will take a definite change in current movement habits to make the change from walker to wheelchair.

My life continues to be one of an ongoing series of accommodations made to this damned disease: first a cane, then a walker, then next a motorized scooter, now a full- size wheelchair. I guess I’ve been reluctant to make each accommodation since I view it as another small surrender to the effects of MSA. It always takes me awhile until I finally realize – it’s all for my own good.

Finally, Happy New Year to All - especially to my fellow MSA travelers!