Post 35 - Odds and Ends

In February, I titled blog entry 33, ‘Can We Please Cancel 2011,’ because it seemed that everything medical was going wrong for both me and my wife, Fran. Between my three visits to the ER for two urinary infections and an intestinal blockage, and Fran’s pending shoulder surgery, January had started the New Year off on a decidedly low note.

Fortunately, events of the past month or so have pretty much chased that January ‘black cloud’ away and restored some order to our lives. Here are some particulars:

First, Fran’s surgery went well and she’s just about finished up with her PT. We have to thank a lot of friends and neighbors who helped out while Fran was out of action. Most of all, we have to thank our daughters, Deb and Lee, who put their busy lives on hold and came down to Florida and gave their Mom and Dad four weeks of incredible care. Thanks girls, don’t know what we would have done without you both. (Note: We just learned Fran will probably need knee surgery in a few weeks. We’re told that this surgery should thankfully be much less involved than the shoulder with a shorter PT duration.)

Next, when my GP visited me in the hospital (I stayed one night after the intestinal blockage) he decided to arrange for a few home services. First came an occupational therapist who surveyed our condo home and made safety suggestions (grab bars, bed rail, raised toilet seat, correct use of walker, etc.) Next came a home health aide (2x weekly) who helped me with functions like bathing and dressing. And finally, a physical therapist (2x weekly) who not only guided me through in-home exercises but also devised a regimen of exercises I can do in the condo’s pool.(I’ve been trying to do them every other day). I don’t know if the pool exercises are having any positive effect on the MSA but I know that they feel good and maybe are helping remove the ten pounds I’ve gained since January 1st.

I should also mention that my new neurologist has ordered 6 weeks of speech therapy to help preserve my voice, speak clearly, and swallow correctly. I’m glad for such therapy, since my voice fades out often, and I’m finding simple swallowing a little more difficult. I just need to be more diligent doing the exercises.

Finally, the last therapeutic device came as a bit of a surprise. Apparently my GP noticed my trouble walking, even with a walker, when I showed up for my February office visit. Before I knew it he had filled out the paperwork and I was called in for a fitting for a scooter. About a week ago I received a Golden Industries Buzzaround; a three wheeled little red number that tops out at a feisty 5 mph. So far, I’ve used it only in our condo complex to get the mail and go to the pool and gatherings at the clubhouse. But soon we’ll venture out, perhaps to a store or park which should be no problem since the scooter easily breaks down into five manageable pieces.

So, after a lousy start, maybe 2011 won't turn out so bad after all.

Added April 10th: Good news for Fran. Surgery not needed on her knee after all. MRI showed arthritis rather than a tear. Some directed PT should lessen the discomfort.

Added April 27th: My earlier ‘”good news” comment above about Fran turned out to be somewhat premature and inaccurate. After little success with physical therapy and other non-invasive methods, Fran’s orthopedist recommended arthroscopic surgery on her right knee which took place on April 17. The procedure, according to the doctor, involved scraping away some arthritic material and trimming up torn cartilage and was a complete success. Fran is going thru a few weeks of physical therapy and, while uncomfortable, she should be back in good shape soon. Thanks again to all our friends who helped us out during this latest episode.

Post 34 - MSA Awareness Month

I like to change the focus of this month’s blog entry from my own personal experiences with MSA to a topic that involves the thousands of people across the country who suffer from this rare and deadly disease.

One of the most common problems a person finds as they seek treatment for this disease is a lack of knowledge and understanding by the medical community about the specific nature of MSA and the unique needs of the patient. Perhaps it’s understandable for a doctor who has never seen a case of MSA (most physicians go through their entire career without encountering one – my GP hadn’t) to either fail to diagnose or worse yet, misdiagnose. In fact, many MSA patients are initially diagnosed with either Parkinson’s disease or Multiple Sclerosis, misdiagnoses which results in a loss of valuable treatment time and often counterproductive medical care.

For the first time, an organized effort is underway to heighten MSA Awareness, not only to the medical community but the public as well. To focus attention, March has been designated as MSA Awareness Month. A comprehensive website, www.msaawareness.org has been created as a central resource for physicians, interested parties, and most importantly, patients. This website also acts as a central location where supporters can learn about research, how to make contributions, or simply “spread the word.“

I urge everyone to visit the website and browse through its well arranged content. No matter whom you are: patient, physician, caregiver, relative, or friend - you’re sure to learn more about Multiple System Atrophy and how you can help spread awareness about this debilitating disease.