December 17, 2012

Year-end Update: Parkinson's and Negligent Me

A Parkinson's pal  confronted me last week, saying "the title of your blog is 'Aging  and Parkinson's and Me.'  You write a lot about aging and, certainly, a lot about you.  But I haven't heard anything in a long time on how you're doing with Parkinson's."

That called me up short and reminded me that the reason I've neglected to write about my Parkinson Disease is that I've neglected to do what I should be doing about my PD.  The car crash a year ago August and the resultant cracked vertebrae  and ongoing lower back pain has given me an excuse to stop doing my BIG exercises for Parkinson's and to overlook clear signs that some of my Parkinson's symptoms are worsening.

So it's time both to write about it and do something about it.

I was diagnosed with Parkinson's Disease (PD) in September 2009 at age 80.  I'm sure I would have been diagnosed earlier if I'd had the tremors that usually accompany Parkinson's.   But I didn't then and still don't now, over three years later.

My early warning signs were a loss of the sense of smell three or four years prior to my diagnosis.  Then a couple of years later family members pointed out that my right arm wasn't swinging much when I walked, another early sign of Parkinson's.   Finally I began having lots of problems with my balance.  This led me to get checked out by a neurologist with the resultant  PD diagnosis.

Since balance was my main issue, my neurologist recommended I take the BIG exercise program designed specifically for people with Parkinson's. He wrote a prescription (the needed passport for getting my sessions covered by Medicare) for the Georgetown Hospital's program.

BIG Exercises Address My Big PD Issues
This program was designed by the same organization -- Lee Silverman Voice Treatment -- that developed the LOUD speech therapy program to address another major Parkinson's symptom -- soft voice, monotone, imprecise articulation. (More about this later.).

The BIG program at Georgetown Hospital required a commitment of four weeks of one-hour  training sessions twice a week. The program focuses on seven daily exercises, each done to a count of ten and repeated five times. The exercises are done with exaggerated movements to counteract the tendency of those of us with Parkinson's to walk in a slow shuffle with  our arms hanging motionless.  To counteract this, Lisa, my BIG therapist, encouraged me to take big steps and swing my arms and upper body forcefully.

The program also incorporates some of the ideas of the LOUD program by instructing you to shout out your exercise count in a loud voice.  Lisa also worked with me on some of my special issues, such as how to get up from my crouched position while gardening and how to change direction without losing my balance.

Here's a video that shows how some of the exercises are done. (I can't help  but wonder in watching this if Sweden's national health insurance pays for this guy spending four weeks in a mountain ski resort  while Medicare only covers my showing up at Georgetown Hospital twice a week.)

Contrary to my usual tendency to throw myself into something new like this with lots of initial enthusiasm and energy  that slowly fades away, I was unusually faithful in sticking with the BIG program because it clearly was working.  My balance was greatly improved and I was taking fairly long walks.

But then the August 2011 car crash.  The lower back pain that accompanied the fractured vertebrae has continued even though the fracture healed.  But that's really not a valid excuse for abandoning the BIG exercises.   In one of my early physical therapy sessions after the accident, I showed the therapist what was involved in each of the seven basic BIG exercises. He recommended not doing the  one exercise that involved twisting the back, but said I could go ahead with the others.  I could but didn't.

I realize I've been far too self-indulgent in response to the back pain.  The original back doctor I saw after getting out  of the hospital told me the best therapy would be for me to just "walk through the pain.'  When circumstances have forced me to do this, I've found it works.  For example, on the recent family trip to Iceland, I did a great deal of walking and usually found that the more I walked the less the pain.

So OK Schappi time to get off your duff and get back with the program.  Fortunately, my neuro decided it was time for me to get a refresher course in BIG so I'm just beginning to work with Lisa again.

LOUD May Well Be Next
Sooner or later, voice becomes a problem for almost 90 percent of people with Parkinson's.  Those of us with Parkinson's develop a diminished sense of how loudly we are speaking. When we think we're talking normally, people can barely hear us.  When we think we're shouting, we sound normal to others.

In my weekly Parkinson's support group meetings, we spend a lot of time asking whoever is speaking to raise his or her voice.  "Speak louder" is the refrain sounded many times each session.

This is particularly frustrating since the group is made up  of highly intelligent people who have had  interesting careers and other life experiences.  They have insights that I'm anxious to hear but often can't.

I'd thought this wasn't a problem for me. But recently I've seen signs that my voice is weakening. I was at a crowded reception after a funeral this past weekend and several times I was asked to repeat myself.

I've been trying self-help by talking loudly to myself when home alone. I started to worry that I'd get in the habit of doing this and end up talking loudly to myself when out  in public.  But then I realized that whereas 20 years ago people would think I'd   escaped from a psych ward if I did this while walking down the street, today people would just assume I was  in a cellphone conversation with someone hard  of hearing.

Maintaining social contacts is increasingly important as we age and I fear that I'd isolate more if I became a Parkinsonian whisperer. So I'm going to look into a possible LOUD training program.  

Here's a video clip of a woman before and after LOUD training:''

Finding and Funding BIG and LOUD Training
If you are interested in finding someone to work with on either of these programs, click on the "Find a Clinician" button on the LSVT home page

Medicare  has placed a new cap under which it will cover $1880 per calendar year for combined speech and physical therapy sessions.  But LSVT advises that there are exceptions under which additional therapy often is approved,  See

Other Signs Of Problems Ahead
Micrographia -- small and cramped handwriting -- is one of the lesser known symptoms of PD and it's emerging with me. 

Parkinson’s can cause slowing of movement and feelings of muscle stiffness in the hands and fingers. Loss of automatic motion also affects the easy, flowing motion of handwriting.

My handwriting was barely legible, even to me, before this latest development. Fortunately, virtually all of my writing  is done on the computer these days.  And the credit card machines that require my signature at checkouts counters are satisfied with whatever scratchings I make.

Here… 's some tips from the Parkinson's Foundation for dealing with this:
  •  Make a deliberate effort to form each letter.  This can be hard to do at first, but is very effective in improving size and legibility of handwriting. 
  •  Use a pen grip (round or triangular shaped rubber or foam cylinders available at stationery stores or where writing materials are found) or a larger size pen to keep your hand more relaxed. 
  • … Try printing rather than writing in a cursive style.  Printing causes you to pause briefly between each letter, keeping writing more legible. 
  • … Using lined paper may provide a “visual target” to keep all letters big when writing. 
  • … A ballpoint pen typically works better than felt tip or “rolling writer” styles. 
  • … Rest your hand if it begins to feel “tight”.
  •   Pause briefly when you see your handwriting becoming smaller. 
  • … Avoid hurrying or trying to write long passages if you are feeling stressed. 
  • … Practice helps.  Remind yourself to slow down, aim big, and pause often!
Now let's see. All I have to do is  perform the prescribed exercises for my back plus the BIG and LOUD exercises,  practice my hand-writing, get some aerobic exercises by long walks  or time on my stationary bike, and work in some strength building and stretching exercises.

I'm sure glad my kids gave me their best Christmas present ever this year.  We decided not to bother with gift exchanges and just enjoy getting together.  That's saved time for the stationary bike. But will I do it?

Stay tuned.

1 comment:

kaitlyn roland said...

I think the LSVT-BIG programs are so beneficial and I am really inspired by all Becky Farley's work on exercise and Parkinson's!! Check out more info on her latest BC presentations: