Thinking about Parkinson’s Disease: What to do next…
By Andean White (Diagnosed May 2008)
(This blog is my observations and opinions only)
“You have Parkinson’s Disease.”
When I’ve talked to other patients diagnosed with PD, they tell me their initial response to the doctor’s declaration was at first, depression, then confirmation, and finally acceptance. After a time, most turned their initial negativity to feelings of optimism. I believe this to be a mixture of what they learned about research, field trials, and communication that has come forward about these activities. And perhaps the fact that one lives with Parkinsons, and rarely dies from Parkinsons.
Who and when to tell? Hopefully your spouse accompanied you to the doctor’s office for comfort and support. They helped you to remember information you missed after the diagnosis declaration.
I recommend spending a day with your spouse discussing what needs to change, then when and whom to tell. For example, a child’s college graduation may delay when the family is informed. Several of my PD acquaintances delayed telling their employer.
Start researching every resource at your disposal—libraries, bookstores, PD associations, foundations, support groups, and the Internet. One caution about the Internet, there are a lot of false Parki-cures and misinformation blended in among the good stuff. A wonderful source for new patients is the American Parkinson’s Disease Associations. Like Michael J. Fox, several patients have written informative books about their experience.
The best advertising is “word of mouth.” And for similar reasons the best PD education is a support group. I made an uninformed decision to skip the local group for five years and missed out on a “ton” of valuable day-to-day living tips, and services available to us.
Expect several upcoming blogs on exercise—it is magical—promotes better sleep, “slows” the progression, improves digestion, increases energy, and “softens” the symptoms impact. A regular exercise routine is recommended and will be very beneficial.
Comments are encouraged
Check back for new Parkinson’s blogs.
Other blog categories you may be interested in are Fun Stuff, Writing, and Short Stories.