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!