Share Your Story
by Peter GallFive years ago, I wrote a letter in which I invited friends and relatives from near and far to visit us in Minneapolis in spite of my Parkinson’s disease. (PDF News & Review, Fall, 2011, page 9, available here.)
I tried to set their minds at ease, making it clear that PD is not contagious, and describing the symptoms they would likely see, including a tremor, a lurching gait, a weak and inarticulate speech and, yes, the occasional drool.
The letter worked. Friends flew in from the coast, people who normally scorn “Flyover Land.” I figured that eight of the 12 visitors over the following year were responding to the letter. Another feature: people who saw the online version reached out to us. Among them was a former neighbor in Washington, DC. He published a health policy newsletter. He also had PD, which provided ample room for us to renew our friendship.
I could not extend such an invitation today. PD has taken a substantial toll on both my body and mind over five years. At the same time, there was never a greater need for a positive outlook and social contacts, even if that means long-distance telephone calls and frequent use of social media. (Skype is a boon to those who are eager to see far-off grandchildren).
Creeping Weakness: I find that I cannot heft the formerly heftable. This, in turn, puts a bigger load on the shoulders of my wife, Pali, who does all the driving and who has to hoist my walker, my wheelchair, our groceries and other heavy articles in and out of the car. In fact, I am one of those very heavy articles that must be assisted into vehicles.
Pills and Spills: As my care-giver, Pali takes on many nursing chores, of which giving me 27 pills at two and a half hour intervals from 6:30 am to 9: 30 PM is the most important. She has to help me when I take a header, since a fall is one of the most dangerous aspects of Iife with PD. I fell often enough that I was designated a “falling star” by a nearby PD Center. Now I wear a canvas belt to make me more grabb-able when I threaten to tumble. I sport little stars on my ID badge to warn colleagues of my wobbly status.
All of this, plus more pronounced tremor and worsened balance, puts me in the “advanced stage” of the disease. Pali strains to cope with my special needs AND our household duties AND finances AND transport AND tending to our offsprings’ needs AND . . . you get the idea. No visitors.
So what do you do about it? There is as yet no cure for PD. But there are researchers avidly working to find one, backed by such organizations as the Parkinson’s Disease Foundation.
You don’t have to be a millionaire to make a donation. Participate in fundraising walks and dinners, for example.
Reward your caregiver, especially when he or she is your spouse. Pali and I have been married for 55 years; I have been diagnosed with PD for 12 years. That means that 22 per cent of Pali’s married life has been spent helping me, with the burden growing year by year. I decided to give Pali, who is a rabid Europhile, a surprise 80th birthday present: a week sailing down the Danube River. I stayed home in a respite care center.
The most valuable feature of my tussle with PD occurs within the walls of the Struthers Parkinson’s Center in Golden Valley MN. There, about two dozen people with PD meet all day twice a week to make a select community known as “Club Create.”
We exercise, sing, and meet in smaller groups for discussions that often serve as a form of group therapy. We work in clay and grow plants from aubergine to zinnia. At hand are neurologists, nurses, various therapists, interns and aides, some of whom provide individual services, all of whom specialize in Parkinson’s and related movement disorders.
By far and away the best part of the Struthers experience — aside from giving our caregivers valuable time off — is the socializing among people who have one thing in common, and that is a PD diagnosis. Some are farmers, some are retired physicians, some are truckers and a very few we know nothing about, other than their first name, thanks to privacy rules and their wishes. But even the shy ones usually emerge from their shells, as they experience the prevailing warmth and confidence of the Struthers community. Conversation is tough because so many of us in Struthers have trouble hearing and pushing our voices to an audible level. We shout a lot.
Oh, yes, I nearly forgot: my short-term memory is shot.
Peter GallPosted by PDF Admin on June 01, 2016