April 4, 2014

My Parkinson's Honeymoon Is Over. What Now?

I'd like to get a divorce from my Parkinson's. But that's not possible today, and I see nothing in the research pipeline offering hope for a possible divorce in my remaining years. I'll just have to do the best I can to manage this non-love affair with Parky.

Someone is muttering, "Block that metaphor!" So I'll stop.

I haven't been seriously handicapped during my five-year Parkinson's honeymoon. So I'll continue the therapies that have clearly helped me. I intend to remain CEO of my own healthcare for as long as I can.

Proven Therapies that Work
Here are some of the things that have helped me the most:

  • 5-HTP -- This serotonin-boosting compound still heads my list, even though I don't talk much about it these days. Three of PD's biggest non-motor problems are insomnia, depression, and constipation. A 50mg pill (the lowest dosage available) at bedtime takes care of all three symptoms for me. I started this blog to tell the world -- or at least the Parkinson's community -- about this miracle drug. I backed off when others who tried it didn't get the relief I did. I've written often about this supplement. If you want more information, just enter "5-HTP" in the search box at top right.
  • The BIG exercises -- Shortly after my PD diagnosis, my neurologist gave me a prescription (the pass necessary for Medicare coverage) for the BIG exercise program designed for people with Parkinson's. Five years later, I'm still doing the exercises nearly every day. I wouldn't stick with the program for so long unless I was convinced it helped. I'm sure this one does. My physical therapist even made a series of brief videos showing yours truly doing these exercises. Number 5 and  6 in these exercise videos are the most effective for my balance and the ones I do daily.
  • My 3 or 4am Quiet Hour -- After decades of trying, I've found a meditation technique that works for me. I had tried the "breathe in, breathe out, empty your mind" technique. I'd followed every guru du jour's instructions. Nothing seemed to work; my grasshopper mind kept jumping around. What finally worked was a free-form mindfulness meditation. I just relax and watch the thoughts parade by. Recently, I've added my BIG and core muscle exercises -- and some stretching-- to this meditation technique. Rather than follow someone else's template, I make up the rules as I go. A big breakthrough came when I realized that two separate sleeps -- one before and one after my middle-of-the-night meditation hour -- work better for me than trying to log a solid seven or eight hours of sleep. This quiet hour has become my favorite time of day. I've written often about it; here's one post that explains -- with a few embarrassing photos -- what I do.
  • Mediterranean Diet -- I'm delighted with the growing consensus that the simple Mediterranean diet is best for most people. I've "been there, done that" with the fad diets touted by the TV and internet hucksters. I can't be bothered using formulas or tracking fats, proteins, and carbohydrates. The Mediterranean diet is simple: Eat more fruits, vegetables, whole grains, pasta and fish. Eat less meat. My neighborhood Lebanese market and carry-out makes it easy for me to follow this diet.
The Wild Card -- Curcumin
I usually avoid dietary supplements, figuring it's safer and more effective to get the vitamins and minerals I need from food, not pills. But I take two supplements every day: the aforementioned 5-HTP and curcumin.

Curcumin is the active ingredient in turmeric, the curry spice Indians call the "holy powder." I discovered it while researching supplements and was startled to find that it's been the subject of over 500 scientific studies. Nearly all that research confirms curcumin's potential for treating neurological disorders like Alzheimer's and Parkinson's, as well as cancer, diabetes, arthritis, cardiovascular disease, depression . . . the list goes on.

For several years now, I've been taking a particular curcumin supplement that's designed to optimize its ability to penetrate the blood-brain barrier, and thus become especially effective. Perhaps it should top my list here of things that have helped me through these PD honeymoon years. Then again, maybe it hasn't done a damn thing for me. There's no way to know. But I'll keep taking my daily pill and monitoring the research.

Things Still To Do
Sometimes my life seems like an unending "to do" list, particularly when it comes to managing my health. Maybe the first thing I should do is relax and remember yet another AA slogan: "Easy does it."

What I really need is a personality transplant. My life until now has been go-go-go. In my job, I was criticized for "shooting from the hip," charging into new ventures without thinking things through. I've always subscribed to the maxims "Anything worth doing is worth overdoing" and "Too much of a good thing is a good thing." 

I recently came across a new word: neophiliac, someone with a strong affinity for novelty. Neophiliacs share these characteristics:
  • A distaste or downright loathing of tradition, repetition, and routine 
  • A tendency to become bored quickly with old things 
  • A desire, bordering on obsession in some cases, to experience novelty 
Sounds like me, alright. But "neophiliac" isn't a desirable personality type for an old man who's dealing with the realities of Parkinson's..

I need to stop and think before I do simple everyday things, like stepping off curbs or turning my body in a different direction. I need to conserve my energy and portion it out thoughtfully.  Can this old dog learn these new tricks?

Hopefully this "being careful" thing is so new and different that it will appeal to my inner neophiliac as an exciting challenge. Ha! I'm also a cock-eyed optimist.

In addition to changing my personality, there are lots of other things I need to do, including:
  • I've been pretty good with some of my exercise programs, but terrible about aerobic exercise. Right behind my desk as I write is an exercise bike. It looms over my shoulder, as if asking why I never use it. Now that winter finally is ending, I must get outside and walk around as often as possible. 
  • I need to work with my doctors -- and do my own research -- on my blood pressure issues. I wrote last week about the taxi cab incident that drove my blood pressure all the way up to 240/122. But perhaps the biggest threat to my health comes from very low -- not high -- blood pressure. It usually happens when I'm outside at midday in warm weather. My systolic (top) pressure drops below 100, I get weak and woozy, and come close to passing out. My internist now has me back on a bp med that carries the typical side effects. Then again, I read studies suggesting that people my age with no coronary issues don't need bp meds. I'm also having good results using two bp-lowering devices the Mayo Clinic endorsed. So, pills or no pills? Maybe I should just flip a coin. I'll do more research, talk to doctors, and report back on this blog.
  • I need to work on increasing the volume of my fading voice. More and more, people ask me, "Please speak up. I can't hear you." I'm not alone here; it's a common issue for people with Parkinson's, and "Louder!" is a call frequently heard at our weekly Parkinson's support group meetings. Luckily, there are therapies. The Lee Silverman Voice Treatment (LSVT) -- the same group that developed the BIG exercises I described -- created a LOUD program of exercises to help people increase their speaking volume. The link above provides more information, with an interesting "before and after" video. 
Yes, there are lots of things to do and think about as my life changes. But there's one thing I need to keep doing -- and doing better and better: communicating and connecting with my treasured friends and family.

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