I like learning about my disease and my therapies. Being involved with my doctors somehow empowers me, and makes me feel like I'm more in control of my health. That feeling of being in charge -- or at least of being a truly active partner in my own healthcare -- might just be as important a part of my own wellbeing these days as the drugs I take, the food I eat, the exercise regimens I follow.
I don't know if other "actively involved" patients feel the same profound benefit I do. If there's one thing I've learned these past few years as a PWP, it's this: everyone's situation is different.
Nevertheless, here's what I've been doing:
I take less medication now than I did when first diagnosed over three ago. From the start, I was prescribed the two standard PD meds:
Azilect. My neurologist got me started with the usual prescription: 1mg a day. Azilect is by far the most expensive med I've ever taken. Filling a 90-day prescription costs about $1,000. Insurance covers a good part, but these pills are the reason, each year, I end up in Medicare's "donut hole," during which time I foot the bill for all my meds. Last year, with my doctor's OK, I started cutting the pill (and the cost) in half... but not just to save money.
As part of my "less is more" campaign, I've been cutting most of my meds in half. I have a theory: doctors base their prescription dosage recommendations on studies based on clinical trials of middle-aged people. I suspect that seniors often do just as well on smaller dosages, which bring fewer side effects. So far, so good... for me. But I always consult my doctors before I tinker with meds.
Carbidopa-Levodopa. My initial prescription: take three times a day, plus an "extended release" (double the standard dosage) at bedtime. Ideally, this med should be taken at equal intervals during the day, so levels remain constant in the body. The extended release is designed to keep the dosage up through the night. But when I started getting up by 5am for my "meditation hour," it occurred to me to take this med on a six-hour schedule: 5am, 11am, 5pm, and 11pm. I suggested -- my neurologist agreed -- that I didn't need the double dose at bedtime. So now I'm taking one dose less than initially prescribed. This reduction may save me a little money, but C-L isn't too costly now that a generic is available. The main reason I'm happy taking less is that prolonged use often results in levodopa-induced dyskinesia, the uncontrollable body movements that we see with Michael J. Fox and others with Parkinson's.
Claims abound that vitamins and dietary supplements can keep you from getting Parkinson's or slow its progress. As a recovering (avid) supplement popper, I've researched most of these claims. Most fail the test, with the exception of curcumin, the active ingredient in the Indian curry "spice of life" turmeric. Here's just one of many posts: http://bit.ly/T4Dpv2.
I also take half a 50mg pill of 5-HTP, the serotonin booster I've written about often. Enter "5-HTP" in the blog's search box for earlier commentaries.
Shortly after my diagnosis in late 2009, my neurologist gave me a prescription (required for Medicare coverage) for the BIG exercise program. It's designed for people with Parkinson’s by the same organization – Lee Silverman Voice Treatment (LSVT) – that developed the LOUD speech therapy for people with PD. The BIG program incorporates some of the features of the voice program, like shouting out your exercise counts in a strong voice.
Here's a video post that shows me working with my physical therapist on BIG exercises. My PT recommended I skip the final, seventh exercises to avoid aggravating my bad back. http://bit.ly/W2uTma
If you'd like to try these exercises, go to the LSVT home page and click on the “Find a Clinician" button.
I was very good about following this regimen, since I could tell it was helping. But the August 2011 car crash and resultant back problems gave me an excuse -- unjustified, but still an excuse -- to slack off on the BIG exercises. I'm now getting back in stride.
I'm also starting some exercises designed to help with PD symptoms that I envision on my horizon.
- My voice and speech are OK now, but I see signs of a gradual weakening of my voice. The local chapter of the Parkinson's Foundation offers free introductory instruction on LOUD twice a month at Georgetown Hospital. I've been once and plan on getting there as often as possible. When I'm alone (and think of it), I shout my ahhh's as loud as possible and do other LOUD voice exercises. I'm not sure I'll continue all the yelling when warm weather returns and the windows are open.
- My handwriting is getting increasingly small and cramped. This development is called micrographia, a Parkinson's symptom. My physical therapist has given me exercises, but I haven't started them yet.
The AA meetings I attended daily for several years were crucial to my recovery from alcoholism. They provided a program to deal with life's ups and downs, one day at a time. When I was diagnosed with Parkinson's, I looked for a similar support group and found one at the local senior center, just ten minutes from my house.
It's an excellent support group, led by a professional group therapist who's had Parkinson's for 25 years. Unlike my AA meetings with people from all walks of life, this PD group brings together mostly older men who've had professional lives like mine.
IMHO, most people with a progressive disease like Parkinson's need others to talk with -- others who are not as emotionally entangled as family members and close friends and who can listen non-judgmentally as they talk about their struggles with the disease, their relationships with care-giving spouses, and feelings and fears about the future.
Our moderator doesn't want us to spend our time together talking about medications, treatments, or doctors. He wants us to share our feelings and fears. Many when first introduced to the group are a bit resentful about being dissuaded from finding out who is taking which pill. But we all end up agreeing that we benefit much more from sharing our inner lives.
This "open sharing" seems like a new experience for most group members, who come to find it invaluable. I'm regularly amazed by what individual members go through to attend our meetings.
It's unfortunate this sort of sharing rarely happens in everyday life. For some members, I'm sure, only our shared terminal illness has provided the opportunity to experience the power that comes from telling the truth, being open and vulnerable, and listening to others without judgment or criticism.