 |
 |
After the news of Michael J. Fox having PD was made public a coupla-three days ago, I surfed a variety of online newspaper's sites to see what was said about the disease itself. There were TONS of articles about Fox and how he's made it thru the past 7 years living with, and battling against PD. Most articles were linked to the Web sites representing a wide variety of highly respected hospitals, movement disorder units, and national agencies claiming to represent local, regional, national, and international Parkinson's communities. I found many of the Web sites carried very similar commentaries about the disease, treatment, meds, age-of-onset, etc. Nearly all of those PD-related sites had not been updated for some time, The few that HAD been updated seemed to ADD a bit more NEW information about PD-drugs, and PD-surgeries, rather than updating the site's already EXISTING information. In other words, as Bob D. pointed out in his 11/26/98 post, the PD information that is disseminated to the general public is NOT sent by people WITH Parkinson's, and because of that, presumably they don't feel the same tremendous sense of urgency WE who live with PD feel as we monitor the sand running out of our respective personal hourglass'. WE know that time is running out for each of us. Almost without exception the sites that I checked out had "sugar-coated" the visible and emotional punishment that Parkies AND their loved ones go thru each day in coping with the huge variety of PD symptoms, and drug side-effects we experience. The numbers of currently existing Parkinsonian's, nation-by-nation and world-wide were grossly down-played as was the potential severity of the disease. The majority of Parkies were ALWAYS referred to as being over 50 years old, and often just outright called "elderly." Excuse me - but _ I _ got MY first, vague Parkinson's symptoms around age 32! And I'm meeting more and more PWPs who have had PD symptoms since they were in their 30s and 40.... 'Baby boomers" with long lives ahead of them - lives tainted by, and eventually stunted by this fearful disease. Read my lips: PARKINSON'S IS *NOT* an "old person's disease" any longer! Not all of us are Michael J. Fox's type of Parkie. Many of us live on limited incomes, derived from a varity of sources - Social Security Disability Insurance (SSDI), Medicare, decreasing savings, alimony, home refinancing, and often MUST rely on financial and personal-time caregiving and charity from family and friends. Along with our loss of financial and personal independence, our human dignity is slowly whittled away till little or none remains. What remains is not a pretty sugar-coated picture. NOT ONE of the PD-related Web site links I browsed thru painted THAT kind of scenario as a possibility for the Parkinson's sufferer! It seems to me that those agencies and medical institutions claiming to represent persons with Parkinson's of all ages just don't get the REAL picture! For many of us, TIME IS RUNNING OUT! "OUT,* as in GONE! I strongly urge the assorted Web masters of Parkinson's-related Web sites to UPDATE your sites! But, by GOLLY, before you do that, get the most CURRANT information about PD. And for goodness sake, STOP sugar-coating that information. Get REAL and get HONEST with the general public. They DESERVE TO KNOW THE TRUTH about Parkinson's Disease! Barb Mallut [log in to unmask]