Post 59 - Help for the Handicapped

Every other year, a quiet and subdued Christmas celebration takes place at our house – just a few close friends or relatives who aren’t heading north or who live here year-round.

 

Next Christmas, however, the activities around here (and I expect to be here) should be merrier and certainly noisier, since our oldest daughter, Deb, our son-in-law, Mike, and our 8-year-old granddaughter, Lily, will be spending the Holidays with us.  And, if we’re really lucky, our youngest daughter, Lee, will get away for a few days and the whole family will be together.

 This “off year,” no matter how quiet and peaceful, was not without its share of health-related surprises.  The first item was the gift I decided to give myself. Every time I chose to transfer from my wheelchair to some other chair was becoming more dangerous because I had to rely more on Fran’s help. That “team” act would be no problem if she and I were anywhere near the same size, but she’s nearly a foot shorter and considerately lighter, and a transfer always meant risking a fall or muscle strain. So, to guard against injury to either of us, we treated ourselves to a motorized “lift” chair from our local medical supply  store; the same one we got our scooter from a few years ago. The chair was delivered on Christmas Eve and has been working just fine.

 

The next item was a surprise from Fran to me, disguised with bright-colored Holiday wrapping.  Apparently, my dear wife is tired of cleaning up after me, especially around the dining table where food regularly spills from our standard shaped, every-day bowls. My gift, as much for herself as for me, was a few dishes especially designed for the handicapped or people with dexterity issues.  I’m pretty sure they’re working as intended – Fran has ordered the whole set and the dog isn’t hanging around my chair as much.

 

Seriously, let’s hope 2013 turns out to be Happy & Healthy for us all!

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.