Well, we all have to start somewhere. So here I am, 4 years into my experience of having a neurological movement disorder called cervical dystonia. When people ask me what it is, I typically respond by having them think about the tremors and twitches they see with Michael J. Fox’s Parkinson’s Disease. “Why?” you might ask. Because dystonia is a symptom of Parkinson’s. It is the uncontrollable spasming and pulling of the part of the body where your dystonia exists. In my case, it’s my neck and along my spinal cord. I go to physical therapy once a week, which manages my pain level (typically my moments throughout each day vary from pain levels between three and seven). While I don’t want to spend the entire time on my first post writing about the past four years, I will tell you that this incurable disorder has changed my life tremendously. For the past two years, I have not been able to teach. And everything in my life of being physically active or even just driving 5 minutes to the pharmacy has been altered. I know my limits, and if I don’t adhere to them, my body gets back at me one way or another.
But let’s start with today.
10:00 a.m. The Metro Mobility driver picked me up in their awfully uncomfortable bus to take me to my physical therapy appointment in the western suburbs. The driver remembered picking me up once before, and he was a delightful older man. We talked most of the way, as long as his hearing aid could hear me, and made me smile the entire forty minutes it took us to get there.
10:45 a.m. My older driver, who reminded me of Wilford Brimley, asked me to check if there was a cancelled appointment. If I could get in sooner, he would wait and take me to my next destination. As luck would have it, this was the one day the appointment before me had actually been cancelled. Sometimes, Metro Mobility’s clients can wait up to an hour to get picked up, so the fact that Charlie was willing to wait for me was a blessing.
So it was time to see my awesome physical therapist, who specializes in a form of therapy called “Mechanical Link”. I will post some information about it at one point because my description won’t do it justice. It is nothing like your traditional physical therapy, and I’m lucky that one of the two people who are certified to practice this in the Twin Cities is my physical therapist. I have been seeing her for the past 4 years and will continue to see her as long as I need to. We are working on a case study together, which I will write more about at a later point too.
11:30 Charlie, a.k.a. Wilford, picked me up with a grin and, to my surprise, offered me a banana. The fact that my next destination, Pathways Wellness Center, was unexpectedly closed, in addition to having to sit on the bus for another hour while we picked up another rider, made this random act of kindness even more meaningful. He joked with me the entire time and told me how much he admired my positive outlook–even as my day went awry and my physical symptoms worsened.
1:00 My amazing driver dropped me off at home, where my two dogs and cat awaited my return looking out the window.
Unfortunately, the rest of the day has been spent repeatedly asking the question, “Why can’t I sleep?” After 4 days of being incredibly tired, yet not being able to sleep, I have been running on fumes. My pain just won’t allow me to get comfortable in bed or anywhere. I am already taking the highest dosages of the medications I’m on, so I’m hoping this life change is only temporary. And as I write this at 10:00 at night, my body continues to struggle with figuring out how to sit to type so that my neck doesn’t pull so bad, which is what causes so much pain.
Even as I met up with a friend at a cafe a few blocks from my house this evening, I still couldn’t get comfortable. One of the side effects of dystonia is that I can’t meet up with my friends as much as I used to; not unless they come to my house where I have everything at my disposal to try to manage my pain levels and symptoms: cold packs, medications, healthy foods, herbs like lemon balm which relaxes the muscles, a tennis ball (yes, this really works), special pillows…
While life isn’t unbearable all the time, I have learned that I have to live moment by moment and take care of my needs first. And we haven’t even gotten to the blessings yet. I just wanted to describe what one of my days look and feel like, and today was the day for new beginnings.