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!
Tuesday, May 22, 2012
Thursday, April 19, 2012
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?”
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?”
Monday, April 2, 2012
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.
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.
Friday, March 16, 2012
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.
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.
Tuesday, February 7, 2012
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!
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!
Friday, January 6, 2012
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!
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!
Saturday, December 3, 2011
Post 44 - Belated Words of Thanks
If I wanted to use the traditional Thanksgiving date to list those things I’m grateful for - then I’m about a week late with this post. But maybe it’s better to wait a week, so my words of thanks won’t seem contrived or matter-of-fact.
I’ve got plenty to be grateful for, but I want to use this post to especially thank the many people, mostly strangers, who have made my life easier, more convenient and certainly safer by their random acts of caring. Contrary to the stereotype of a public who only seems to “look out” for themselves, I have received nothing but genuine kindness from a wide spectrum of people: drivers who stop their cars in the middle of a shopping center drive lane allowing me and my walker to safely pass; teenagers who hold a door open so I can slowly go through; hostesses or waiters who patiently guide me to spacious seating via ramps instead of steps and then store my walker so it’s not in anyone’s way; and those people who have rushed to my aid when I fell, as recently happened when I stumbled getting out of a barber’s chair.
I could go on at length describing episodes like the above when I didn’t always have the opportunity to say thanks for the help. So, to all you folks who put your busy lives on hold for a moment to help make the life of a total stranger a little easier – THANK YOU so very much for your kindness.
I must also express my gratitude to all my friends who are always available to lend me or Fran a helping hand to do those tasks I used to take for granted. To all of you, thanks for offering to help and never giving the slightest hint that it’s an imposition.
Like Lou Gehrig famously said –“I feel like the luckiest man alive.”
Happy Holidays to all and Best Wishes for 2012!
I’ve got plenty to be grateful for, but I want to use this post to especially thank the many people, mostly strangers, who have made my life easier, more convenient and certainly safer by their random acts of caring. Contrary to the stereotype of a public who only seems to “look out” for themselves, I have received nothing but genuine kindness from a wide spectrum of people: drivers who stop their cars in the middle of a shopping center drive lane allowing me and my walker to safely pass; teenagers who hold a door open so I can slowly go through; hostesses or waiters who patiently guide me to spacious seating via ramps instead of steps and then store my walker so it’s not in anyone’s way; and those people who have rushed to my aid when I fell, as recently happened when I stumbled getting out of a barber’s chair.
I could go on at length describing episodes like the above when I didn’t always have the opportunity to say thanks for the help. So, to all you folks who put your busy lives on hold for a moment to help make the life of a total stranger a little easier – THANK YOU so very much for your kindness.
I must also express my gratitude to all my friends who are always available to lend me or Fran a helping hand to do those tasks I used to take for granted. To all of you, thanks for offering to help and never giving the slightest hint that it’s an imposition.
Like Lou Gehrig famously said –“I feel like the luckiest man alive.”
Happy Holidays to all and Best Wishes for 2012!
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