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!
Friday, January 6, 2012
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!
Thursday, November 10, 2011
Post 43 - XCell Resurfaces (sort of)
Those of you who have followed this blog since its start in August of 2009 will remember its main purpose was to chronicle everything involved in my stem cell therapy at the XCell Clinic in Cologne, Germany in September of that same year. I started out very hopeful the treatment might result in a reversal or even a cessation of the symptoms associated with this nasty disease.
As it turned out, the treatment had little, if any, positive impact on my condition. As time went by after the treatment, I became more critical of the clinic’s operating methods, especially their patient follow-up procedures, which in my case consisted of one automated Christmas card and one, poorly worded questionnaire asking about my post visit condition. I quickly lost confidence in the accuracy of the survey when I realized that XCell listed me suffering from Multiple Sclerosis rather than MSA. I wrote and corrected them but never received an acknowledgment.
By now, most readers know XCell has closed their doors and filed for bankruptcy. I thought I had heard the last from them until a few weeks ago when I received an email message from one of the doctors who claimed he was a founder of XCell. He intimated that the problem was just a misunderstanding between the German Health Dept and XCell which would be resolved soon.
Rather than wait for this resolution to take place, this doctor proudly stated the remnants of XCell had joined a clinic in the Bangkok, Thailand area and would resume stem cell therapy procedure there.
I’ve concluded there must be a fortune to be made in “medical tourism” particularly stem cell therapy. Why else would XCell resurface so quickly in a location where regulations seem lax and medical oversight appears less strict than Europe?
As it turned out, the treatment had little, if any, positive impact on my condition. As time went by after the treatment, I became more critical of the clinic’s operating methods, especially their patient follow-up procedures, which in my case consisted of one automated Christmas card and one, poorly worded questionnaire asking about my post visit condition. I quickly lost confidence in the accuracy of the survey when I realized that XCell listed me suffering from Multiple Sclerosis rather than MSA. I wrote and corrected them but never received an acknowledgment.
By now, most readers know XCell has closed their doors and filed for bankruptcy. I thought I had heard the last from them until a few weeks ago when I received an email message from one of the doctors who claimed he was a founder of XCell. He intimated that the problem was just a misunderstanding between the German Health Dept and XCell which would be resolved soon.
Rather than wait for this resolution to take place, this doctor proudly stated the remnants of XCell had joined a clinic in the Bangkok, Thailand area and would resume stem cell therapy procedure there.
I’ve concluded there must be a fortune to be made in “medical tourism” particularly stem cell therapy. Why else would XCell resurface so quickly in a location where regulations seem lax and medical oversight appears less strict than Europe?
Sunday, October 9, 2011
Post 42 - To Laugh or Not to Laugh
As it progresses, Multiple System Atrophy causes several interesting side effects that make life even more confusing and unpredictable. For example, I know I often start the first word of my opening comment much too loud and that it takes a few spoken words to determine the proper volume. I’ve also acquired something called a “startle reflex,” where I over-react to loud sounds or even the appearance of someone unexpectedly into the same room. Events like these cause me to “jump” and sometimes cry out in surprise.
Speaking of crying out, another of these effects deals with exaggerated emotional reactions: like crying at times after listening to a sad story or a TV show or - just the opposite - laughing out loud at inappropriate moments. I haven’t experienced the crying effect yet, thank goodness, but I will admit to the excessive or exaggerated laughter part. Just the other night, I made what I was sure was a hysterical comment to my patient wife, Fran, and found myself laughing out-loud like the village idiot. After realizing she was looking at me like I was insane, I finally realized I was over-reacting and was able to get a grip on myself.
I mention this because I had a scheduled 6-month visit with my neurologist last week, who asked, “What’s new.” After revealing my recent episodes of being easily startled along with boisterous laughter, the doctor produced a sample of - and a 6-week prescription for – Neudexta, a compound proven effective in diminishing these MSA side effects.
I guess I’ll give Neudexta a try. After all, I would like to overcome certain of these side effects before they become really embarrassing. But I think I’d like to keep the laughter effect, even if I’m the only one getting the joke. MSA can be pretty depressing stuff - a little laughter can be therapeutic.
ADDED: Jan 2012 - I neglected to mention I never did fill the Neudextra script. Came to the conclusion the relatively mild symptoms didn't warrant putting another drug in my body. Several months have passed and the symptoms haven't gotten worse, so I guess I made the right call.
Speaking of crying out, another of these effects deals with exaggerated emotional reactions: like crying at times after listening to a sad story or a TV show or - just the opposite - laughing out loud at inappropriate moments. I haven’t experienced the crying effect yet, thank goodness, but I will admit to the excessive or exaggerated laughter part. Just the other night, I made what I was sure was a hysterical comment to my patient wife, Fran, and found myself laughing out-loud like the village idiot. After realizing she was looking at me like I was insane, I finally realized I was over-reacting and was able to get a grip on myself.
I mention this because I had a scheduled 6-month visit with my neurologist last week, who asked, “What’s new.” After revealing my recent episodes of being easily startled along with boisterous laughter, the doctor produced a sample of - and a 6-week prescription for – Neudexta, a compound proven effective in diminishing these MSA side effects.
I guess I’ll give Neudexta a try. After all, I would like to overcome certain of these side effects before they become really embarrassing. But I think I’d like to keep the laughter effect, even if I’m the only one getting the joke. MSA can be pretty depressing stuff - a little laughter can be therapeutic.
ADDED: Jan 2012 - I neglected to mention I never did fill the Neudextra script. Came to the conclusion the relatively mild symptoms didn't warrant putting another drug in my body. Several months have passed and the symptoms haven't gotten worse, so I guess I made the right call.
Tuesday, September 6, 2011
Post 41 - A Temporary Sense of Accomplishment
One of the greatest drawbacks of having MSA, for me, has been the difficulty or complete inability to perform tasks that used to be quite simple during what I now refer to as “my former life;” tasks I took for granted like climbing a ladder, washing and waxing the car, painting some wood trim (thanks, Lee), cleaning out the garage, and one of the things I miss most – driving. Now, just about everything gets done for me by a group of gracious friends and relatives (especially my wife, Fran) all of whom would rather do these simple tasks than pick me up off the floor if I try to do them myself.
Well, this past Holiday weekend I decided enough was enough and I would do some simple plumbing (it was Labor Day, which seemed somehow fitting). Actually, I wanted to remove the noisy toilet fill valves (3) and not only install new ones but add to each a dual flush mechanism to save water.
After convincing Fran that there was no risk of falling, I succeeded in accomplishing each job with a minimum of problems (the hardest part was climbing under each toilet to shut off the water and disconnect/reconnect the supply lines - the installation of the actual valves was “a piece of cake.” I admit there were a couple of awkward losses of balance and minor falls, but nothing serious. So, for the first time in a while, I was able to stand back and feel the satisfaction of doing something all by myself.
That sense of satisfaction lasted all of 20 minutes when I next tried to replace a beige telephone jack to a more fashion appropriate white one. No matter how hard I tried, there was no way I could wrap the tiny wires around the colored posts or keep the screwdriver head on the miniature screw heads. So, my obliging ex-phone installer friend Dave came to the rescue in a task that took him all of 5 minutes.
From The Thrill of Victory to The Agony of Defeat, all in less than a-half hour - at least the toilets are still working.
Well, this past Holiday weekend I decided enough was enough and I would do some simple plumbing (it was Labor Day, which seemed somehow fitting). Actually, I wanted to remove the noisy toilet fill valves (3) and not only install new ones but add to each a dual flush mechanism to save water.
After convincing Fran that there was no risk of falling, I succeeded in accomplishing each job with a minimum of problems (the hardest part was climbing under each toilet to shut off the water and disconnect/reconnect the supply lines - the installation of the actual valves was “a piece of cake.” I admit there were a couple of awkward losses of balance and minor falls, but nothing serious. So, for the first time in a while, I was able to stand back and feel the satisfaction of doing something all by myself.
That sense of satisfaction lasted all of 20 minutes when I next tried to replace a beige telephone jack to a more fashion appropriate white one. No matter how hard I tried, there was no way I could wrap the tiny wires around the colored posts or keep the screwdriver head on the miniature screw heads. So, my obliging ex-phone installer friend Dave came to the rescue in a task that took him all of 5 minutes.
From The Thrill of Victory to The Agony of Defeat, all in less than a-half hour - at least the toilets are still working.
Monday, July 25, 2011
Post 40 - Status Check
In preparation for my scheduled three month visit with my GP at the end of this week, I was taking stock of my current condition and listing any questions I wanted to ask him. I’ve learned to make the list ahead of time so I don’t forget something while speaking with him (I’m forgetting simple things more frequently as this disease progresses). While listing my current condition, I realized it’s been awhile since I compared the extent of my symptoms to earlier findings.
In Post #3 (Aug 2009), I felt my condition deserved a 4 out of a total of 10 with a 10 being the worst (completely dependent for care). In Post #23, seven months later (Mar 2010), I happily reported no significant deterioration and again felt my condition rated another 4. That optimism was short-lived, however, when just three months later in Post 26 (Jun 2010), I reported an overall deterioration of most symptoms, which realistically raised the listing to a 6.
Here we are in late July of 2011 – almost a year since the last time I offered a rating. First, let me state that my symptoms are basically the same as I spelled out in Post #3, nearly two years ago. With the exception of serious sleep disturbances, each of them continues – only worse. Judging on how much I’m depending on Fran and my friends for everyday assistance, I now feel my overall condition rates an 8. Fortunately, there’s no pain associated with this condition (unless, of course, I continue to fall, trip, or stumble).
My medication list hasn’t changed much – actually it’s been reduced:
B-12 injection (1x monthly)
Folic acid (in conjunction w/B-12) (2x daily)
Paxil (to avoid cluster headaches) (1x daily)
Florinef (for low BP) (1x daily)
Sanctura (for urinary issues) (1x daily)
I don’t anticipate my GP will change anything – either physically or pharmacologically – but who knows? I’ll post any changes.
In Post #3 (Aug 2009), I felt my condition deserved a 4 out of a total of 10 with a 10 being the worst (completely dependent for care). In Post #23, seven months later (Mar 2010), I happily reported no significant deterioration and again felt my condition rated another 4. That optimism was short-lived, however, when just three months later in Post 26 (Jun 2010), I reported an overall deterioration of most symptoms, which realistically raised the listing to a 6.
Here we are in late July of 2011 – almost a year since the last time I offered a rating. First, let me state that my symptoms are basically the same as I spelled out in Post #3, nearly two years ago. With the exception of serious sleep disturbances, each of them continues – only worse. Judging on how much I’m depending on Fran and my friends for everyday assistance, I now feel my overall condition rates an 8. Fortunately, there’s no pain associated with this condition (unless, of course, I continue to fall, trip, or stumble).
My medication list hasn’t changed much – actually it’s been reduced:
B-12 injection (1x monthly)
Folic acid (in conjunction w/B-12) (2x daily)
Paxil (to avoid cluster headaches) (1x daily)
Florinef (for low BP) (1x daily)
Sanctura (for urinary issues) (1x daily)
I don’t anticipate my GP will change anything – either physically or pharmacologically – but who knows? I’ll post any changes.
Tuesday, July 12, 2011
Post 39 - How & Why This Blog Has Changed
The original intent of this blog, which began almost 2 years ago, on August 4, 2009, was to describe my decision to undergo stem cell therapy and my selection of the XCell Center in Cologne, Germany to conduct the procedure - which I underwent in September of that year. In early 2009 when I first let it be known that I was considering such a procedure, I received quite a few requests for additional details. Instead of the time consuming process of replying to each questioner, I decided to create this blog where one comment would reach everyone.
Blog entries 1-8 covered the XCell selection/application process and tried to cover the many preliminaries leading up to the procedure. Entries 9 & 10 were written while at XCell and described the actual procedure along with some of the pleasant experiences in Cologne.
Entries 11 -22 were created every two weeks after arriving home, in which I covered what was happening to me physically – good or bad. For the most part, those 12 entries revealed no significant improvement in my condition, just continuation of a gradual decline.
In March 2010, the time between entries increased to one per month. This increase was decided on because I could no longer see a reason to report the “non event” of little or no positive change in my condition. I’ve continued the monthly sequence for a little over a year now and realize this blog has slowly changed its focus.
I can’t add anything more about the stem cell procedure I underwent 17 months ago. Frankly, I don’t believe it had any significant impact on my condition. I knew the chances for improvement were slim from the beginning, but couldn’t rule out that small hope the procedure offered. As for XCell, I am disappointed, at first by their lack of patient follow-up and simple research, i.e. how many MSA patients have received stem cell treatment and what do follow-up interviews reveal? And now, I’m very disappointed by the recent events which have led to their closure and filing for insolvency; events which portray the clinic as one run by medical opportunists who held out false hope to desperate patients.
From now on, I’ll simply report on my overall condition and some of the steps I take to try and maintain my health. I guess this blog has become something of a catharsis for me; a place where I can candidly discuss my condition and try to make some sense out of this weird ride I’m taking. You’re welcome to come along with me.
Blog entries 1-8 covered the XCell selection/application process and tried to cover the many preliminaries leading up to the procedure. Entries 9 & 10 were written while at XCell and described the actual procedure along with some of the pleasant experiences in Cologne.
Entries 11 -22 were created every two weeks after arriving home, in which I covered what was happening to me physically – good or bad. For the most part, those 12 entries revealed no significant improvement in my condition, just continuation of a gradual decline.
In March 2010, the time between entries increased to one per month. This increase was decided on because I could no longer see a reason to report the “non event” of little or no positive change in my condition. I’ve continued the monthly sequence for a little over a year now and realize this blog has slowly changed its focus.
I can’t add anything more about the stem cell procedure I underwent 17 months ago. Frankly, I don’t believe it had any significant impact on my condition. I knew the chances for improvement were slim from the beginning, but couldn’t rule out that small hope the procedure offered. As for XCell, I am disappointed, at first by their lack of patient follow-up and simple research, i.e. how many MSA patients have received stem cell treatment and what do follow-up interviews reveal? And now, I’m very disappointed by the recent events which have led to their closure and filing for insolvency; events which portray the clinic as one run by medical opportunists who held out false hope to desperate patients.
From now on, I’ll simply report on my overall condition and some of the steps I take to try and maintain my health. I guess this blog has become something of a catharsis for me; a place where I can candidly discuss my condition and try to make some sense out of this weird ride I’m taking. You’re welcome to come along with me.
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