The launch of this blog coincided with turning point in my journey with PD. In January I made a significant change in my drug treatment plan. I moved from a dopamine agonist, which works by stimulating your brain to produce more dopamine, to Levodopa, which the brain uses as a sort of “synthetic” dopamine, to control the misfiring messages that cause all the physiological issues of PD.
I’m thrilled to let you know it is working amazingly well for me.
This past weekend my husband and I went to Vermont to spend the weekend at the ski house we rent with our close friends Roger and Karen. We see them two to three times a month, and they’ve seen me at all times of the day and night, doing (and not doing) all my daily activities. This weekend, within an hour of our arrival, my dear friend Karen yelled out, “I don’t know who you are!” She hadn’t seen me as energetic and mobile in a long, long time. And, you know, when you feel good physically, you feel good. Especially when you suddenly realize that you haven’t felt good in quite a while.
The next morning Karen came downstairs. I was already up, and had begun a fire in the fireplace, started the coffee, and was walking around the kitchen. After sharing my delight about how good I felt, she responded, “Wow, the next thing you know, you’ll be outside brushing snow off cars and getting them warmed up for us!” I looked at her and remarked, “The pills made me faster—they didn’t make me any nicer.” Which, in my twisted little world, made us laugh so hard we nearly fell on the floor crying.
It is so easy to convince yourself you’re fine, even while you're making compromises constantly, in every aspect of your life, including your attitude. To think good enough is good enough, and to let myself settle for how I was living. Several people have asked why my doctor didn’t start me on these drugs sooner. And really the only answer is, I let her. Now my doctor is amazing. On the day I met her, after spending an hour with me, she told me, “You’re too young, you’re too busy, and you have too much to do. We’re going to make you feel a whole lot better.” And she did.
But somewhere along the line I started playing the “good patient,” thinking she wanted me to say I was fine. Thinking I wanted to be fine, and if I kept on saying it, maybe it would become true.
I finally realized that I’d been thinking that if I increased my dosage or added something new to the cocktail of meds I’m on that those actions would be admitting failure of some kind.
But that, my friends, is a bullshit way to be. My doctor wants me to be perfect. She says it every time I see her: “I want you leaving here as close to perfect as you can be.” Yet I got stuck in the stupid thought that my PD was somehow inconveniencing her. But guess what? She’s fine. She’s a badass. And I am too. I just needed to allow her to help me. To demand that I be perfect for myself. To give her the information she needed so that she could do the job she wanted to do. You see, I have a particular brilliance at making easy things way harder than they need to be. And I bet I’m not the only one.
I can’t emphasize enough that I’m not a doctor. I’m not giving medical advice. Parkinson’s is a complex and individual disease. The combination, progression, severity and co-incidence of symptoms differs markedly and wildly from one person to another. As does the effectiveness and impact of the medication we take. I’m not a medical expert, but I am an expert on me, so I’m sharing what I’ve experienced. And so far, after a few weeks on this new path, things are GOOD, so I’ll take that for now.
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I’m not a doctor, although some of the good people at the Michael J. Fox Foundation are. This is an article about Levodopa that helps explain why this step is sometimes controversial in the PD patient community.
I’m not advocating for any particular treatment path, but I do encourage other PWPDs (persons with PD) to discuss all the treatment options with their doctors.