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