CHAMPs > Parkinson's CHAMP
February 2012 - Team Bettina enters the Neuro Film Festival
In April 2006 a friend of mine asked me why I was so nervous all the time. I said, “Why would you say that?” He pointed at my hand and said I was always tapping my finger. I shrugged and chalked it up to my new computer mouse. I was a journalist, so when I wasn’t writing notes longhand, I was typing.
I saw a doctor who diagnosed carpal tunnel and then sent me for some nerve testing. I wore a brace, but that didn’t stop the movement. And I noticed that when I wasn’t tapping out random Morse code, the twitch took up residence in the muscle between my thumb and index finger.
I went to see a neurologist, but he specialized in older patients – I was only 34 at the time. “Parkinson’s is a disease of stillness, not movement,” he said confidently. But he and his partner stood staring at my hand for a long time.
It was my acupuncturist who finally said I had to push to see someone at the National Institutes of Health. She said she had never treated anyone who didn’t show signs of improvement – and I was steadily getting worse.
On January 8, 2007, a team of neurologists watched me wave my arms, stand on one leg and write my name over and over again before they declared I had Parkinson’s disease. This year I passed the five-year mark of that life-changing moment and I can’t say I’m any less stunned.
Soon after my diagnosis I was told there was a six-month wait to see a neurologist at Georgetown (I live in the Washington, DC-metro area). So rather than sit and wait for that appointment I started to get busy with projects and one of them was to find a great fundraising opportunity. It took me one five-second Google search to find the Unity Walk and I am so happy I did!
I launched Team Bettina (slogan: “Can I Get Fries With My Shake?”) and have participated with a fantastic group of supportive friends and family every year since then. I think we raised just shy of $5,000 in 2007 and hit a record (for us) $13,000+ last year. I’m hoping to push beyond $15,000 in 2012!
As my tremors have gotten worse, the hobbies and things I used to enjoy have become more difficult, so I have had to adjust. I’ve been a pianist since I was five years old, but sometimes playing my grand piano requires a tremendous physical effort – which is how I discovered composing (on an electronic keyboard with more responsive keys). My handwriting is terrible now, so I use dictation software to “write” and software that allows me to customize the cards and letters I used to make by hand.
I’ve also become enamored of photography and film making (tripod required to steady the camera, of course!). Last year was the first time I entered the Neuro Film Festival, which I think is an excellent way to raise awareness. It provided me the opportunity to show, rather than just tell, people how difficult it can be on a daily basis. But also how you can find humor in even the toughest times.
This year I approached the film from a kid’s point of view – I have lots of friends with children who are aware of my Parkinson’s but may not completely understand, or may even be a bit afraid. “Everything Moves” is dedicated to them.
For more information on the festival, please go to www.youtube.com/neurofilmfest.
On February 7, you can vote for your favorite movie (the site will ask you to register). There are a number of excellent entrants who talk about Parkinson’s. And be sure to watch my film at: http://youtu.be/JNbgOwX7bMw or on my YouTube channel: BreakfastandBrains.