Good things and bad have happened since I scaled back from the Requip XL. It turns out that I do not, in fact, seem to be suffering from Dopamine Agonist Withdrawal Syndrome [knock wood – I still have a couple of weeks to go before I’m done with it completely]. And even better than that, my relentless craving to buy everything in sight – from chocolate cake to entire racks of evening gowns at Nordstrom – seems to have faded to near nothing. Add to that the fact that I’m sleeping through the night (thanks to another drug my neuro put me on), and I should be right as rain.
But there’s also the “bad” – I’m moving again. Not moving in the good sense of “get up and go,” which is usually tough for people with Parkinson’s, but moving in the seismic sense. The Requip kept the Sinemet on an even keel throughout the day. Now I have two extra doses of Sinemet and nothing to keep it even. Like clockwork, I take Sinemet five times per day. And like clockwork, when it starts to wear off, my tremor (and now some rigidity) starts to shake my right arm and leg. Even my exercise routine, the endurance training that gave me back five years of mobility, can’t conquer it this time. I was riding the bike as I always do, thinking that maybe I could bridge the gap between doses with a rigorous session of spinning, and found that I was still shaking powerfully.
By the time my trainer found me, I was crying. At Gold’s Gym. Which is really a very lame thing to be doing. Especially when, standing just feet away from me, was a 50-year-old (at least) female body builder rehearsing for her next show. As she practiced her poses to a medley of kick-ass music, I sobbed to my trainer that I couldn’t get off the bicycle to get myself a glass of water. In the spirit of The Daily Show’s John Stewart, that was my moment of Zen.
I’m not writing this post as an online pity party. Or even to complain. It’s more of an explanation. An apology of sorts. An apology for leaving the party early (which I had to do last night – right in the middle of my dear friend Stephanie’s auction – because I was both unnerved by my unsteadiness and dosing the medication before I went to sleep). An apology for not eating when I come over for dinner – because I’m either allergic to the beautiful meal you’ve prepared, too tired to eat it, or haven’t timed the dinner with my medication. An apology for not holding or changing or feeding the baby, because I’m afraid I will drop the precious little bundle. An apology for not drinking, for not staying up late, for seeming too cautious or reluctant or for canceling plans…
I’ve written before, and still believe, that I do not hold up the heaviest pieces of the sky. I have a catalog of friends who have weathered far more terrible storms. And I write this for them as well – sometimes you can’t do the things you want to do. And when you’re only 30 or 40 years old, that’s a tough pill to swallow – pun intended. For me, the difficult part is how visible the Parkinson’s is becoming. I foolishly grew used to hearing “I can’t even tell you have Parkinson’s!”
I want to end this entry on a positive note. So I have a story, from last night’s auction in fact, that illustrates just how incredible my friends are – Stephanie asked me to take a photo of her with a couple of the evening’s big sponsors. In order to still my shaky camera so I can literally shoot straight, I do a gesture where I bring my left arm up and across my body as a camera perch. One of the people I was shooting said something to Stephanie about my “signature move.” Stephanie smiled broadly and said, “That’s my college best friend Bettina. She has Parkinson’s. She’s a fantastic photographer. She uses her arm to steady the camera. Isn’t she amazing?” And then she turned her million-watt smile at my lens and winked.
For Stephanie, it has never been “I can’t even tell you have Parkinson’s,” it’s “I don’t care that you have it.”
Gold’s Gym in Annandale, VA, has been incredibly good to me. I’ve (over)documented my success with endurance training at reducing the side effects of my medication and, more importantly, calming my tremor. The gym even features my personal video on their home page – http://www.goldsgym.com/gyms/virginia/annandale/11
So I thought that I would launch this year’s fundraising effort for the Parkinson’s Unity Walk at the gym (my fundraising page: http://unitywalk.kintera.org/2013/bettina).
My trainer, Brian, has volunteered to teach a boot camp class, and he’s invited some women from a pro-am Team USA Football team he helps train to come in and meet and great too. I’m in the process of getting a chiropractor, physical therapist, and masseuse in to offer free consultations, and there will be Gold’s Gym attire raffled off as well.
The donation at the door is $20 cash – $15 of which will go directly to the Unity Walk, who then distributes 100% of the funds raised to a variety of excellent organizations supporting research and treatment efforts to fight Parkinson’s Disease.
Please join us on Sunday, April 7, between noon and 5pm. You can come in and hang out or work out. Bring your friends and their friends too. I’m also looking for other people to donate their time and skills to the event to help raise awareness and money – if you know a good photographer (or are one!), please have them e-mail me through this blog.
This year’s tearjerker entry into the Neurology Film Festival is dedicated to my sister, who makes the world a better place. The tag line for the film this year is the unfortunately bulky, “Let’s put our brains together to cure brain disease,” which is really a love sentiment, but “brain disease” makes me sound like I have some alien form growing out of my head.
Which brings me to my second point. Am I allowed to be snarky about brain disease? Parkinson’s is, after all, a brain disease. I think I qualify for gallows humor. It might be a little like having to be Jewish to tell Jewish jokes. My friend Scott wore his Team Bettina T-shirt to the gym recently – the one with the tag line “Can I get some fries with my shake,” – and he said people were really not happy with it. They thought it was in poor taste. I imagined him standing there, guarding himself from the judgmental stares of his fellow gym goers by stacking up five pound weights in front of him and waving a resistance band at the guys trying to throw their water bottles at him while they boo. Too much?
Let’s get on with it …. drum roll please (and get your tissues out).
To say the gang at the Parkinson’s Unity Walk organization is an amazing group of people is a gross understatement. I credit them for kick-starting the regimen that has me feeling healthier and stronger than I ever have in my life. When I was diagnosed with Parkinson’s Disease (my six-year “anniversary” is January 2013), I was in pretty good shape except for my tremor. As the years (and the tremor) have progressed, things got predictably more difficult. I’ve played the piano since I was five, I’m a writer who loved to keep a journal, I love to drive and used to own a sports car with a manual transmission. By year four of my disease, I could no longer play the piano, hold a pen or drive a stick shift vehicle. I didn’t exactly give up, but I’d decided that being sick was my lot in life. That I would always be tired and nauseated, too shaky to do much, in a word … weak.
The picture in this blog post was taken a couple of weeks ago. I am dead lifting 115 pounds. I weigh 125. I took my mom to the gym with me recently so she could see one of my workouts. When I leaned over to pick up the weight, she reflexively said, “Don’t hurt yourself!” And then she watched me to do three sets of six repetitions with that weight.
Endurance training alone didn’t get me here. It was a combination of a friend and Unity Walk organizer who reached out and directed me to a movement disorder specialist more suited to my needs, a devoted personal trainer who got the entire gym staff emotionally invested in my progress, my new doctor’s adjustment of my meds, and my own desperate desire to regain some measure of control over my body. My first Unity Walk was in April 2007, and I hope to never miss one. The team that runs the organization is selfless and caring, and the friendships I have forged with them and the Unity Walk network have had a profoundly positive effect on my well-being.
I have had several people ask me what endurance training involves, and as I start to give them the rundown of my daily workouts, they lose a little bit of color in their face. It isn’t easy. There were days when I cried in my car. Days when I didn’t want to get out of bed. Days when I thought I was nuts for even trying. And the tricky part with Parkinson’s is that you really have to listen closely to what your body is telling you. There’s the “I need a break” moan and groan from an aching muscle you can still push, and there’s the “Please lie down before you die” muscle pain that tells you it’s too much.
Truthfully, it’s attitude. Mental resolve. Emotional strength. And the support of friends and family who keep rooting for me no matter what. Because the mind needs the workout as much as the body does. The tremor has abated dramatically for now. And it feels amazing. But I’m a realist, and I know that although I may take a day off to get some rest, Parkinson’s will not. But I’ve got an army of friends and family there to help me keep fighting.