One of the difficulties, ironically, is that there are so many Parkinson’s organizations. Even if you just look at the national organizations, the internet seems littered with them! (See Who the heck are all these organizations?) Both among PWP (people with Parkinson’s) and their loving caregivers, there is a great desire to help other PWP. Many of these organizations have good information, but some are better organized and more focused than others.
I’ve found a few resources that are particularly helpful – and are not overwhelming.
For a great summary of some immediate questions you might have right after diagnosis, take a look at https://www.michaeljfox.org/understanding-parkinsons/i-have-got-what.php from the Michael J. Fox Foundation. (Yes, that Michael J. Fox, the actor with PD.)
Here’s basic information about what PD is, how it’s diagnosed, and symptoms: https://www.davisphinneyfoundation.org/parkinsons-101/ This comes from the Davis Phinney Foundation, set up by an Olympic athlete with PD.
The Davis Phinney Foundation focuses on living the best life that you can with PD. They’ve published a really helpful (and free) book which includes what you need to know about PD, what to do after diagnosis, young onset issues, exercise, diet and nutrition, emotional health, complementary therapies, medication, surgical therapies, care partners/children/family, and many worksheets/self-assessments/how to prepare for medical appointments and much more. This is really useful: Every Victory Counts, at https://www.davisphinneyfoundation.org/resources/every-victory-counts-2017/ You can order the book to be shipped to you, or you can download it to your e-reader/computer. Since I found the e-reader print a bit small, and since I like being able to dog-ear pages, write marginal notes, and flip around the book, I prefer the paper version.
When you start discussing possible treatments with your doctor, it’s good to know what specific drugs are for, as well as their common side effects. This information about conventional treatments, from the Parkinson Foundation, is helpful: http://www.parkinson.org/Understanding-Parkinsons/Treatment However, this may not be the place to learn about what are called “alternative” or “complementary” therapies, since this foundation limits itself to vitamins and nutritional supplements when discussing alternatives. As far as I can tell, “alternative” refers to treatments that avoid traditional medicine, while “complementary” refers to treatments used in addition to traditional medicine, but the terms are often used interchangeably.
For a solid review of complementary therapies, I’ve found a terrific book that deals with alternative/complementary therapies as well as conventional therapies. I especially like that research (or lack of it) is discussed in detail in Optimal Health with Parkinson’s Disease: A Guide to Integrating Lifestyle, Alternative and Conventional Medicine by Monique Giroux, MD. I really appreciate being treated as an intelligent person, able to make decisions for myself. Since exercise is emerging as a particularly effective therapy – not just to make symptoms easier to cope with, but to slow down and possibly reverse PD progression – it’s useful to see what other possibilities are available.
I read a lot of books after I was diagnosed, but I found that I needed to re-read them months later because I just couldn’t take it all in. You are adjusting to a huge permanent change in your life, so don’t be surprised if this happens to you, too. You’ve joined the group of PWP (people with Parkinson’s), and while that can initially be horrifying, you may well find that these become some of your favorite people. (Did you know that there is a Parkinson’s Personality? More on that another time.)
Image from Pixabay.com.
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