|Diana Rachlis says learning to cope with her Parkinson’s disease symptoms has helped her to participate and feel included in community life.|
By Diana Rachlis
A shaking tremor in my left hand, my writing hand, was the catalyst for seeing the doctor and being diagnosed with Parkinson’s disease in 2009. I was 35 years old.
Parkinson’s is a progressive disorder of the central nervous system that may lead to tremors, rigidity, slowness of movement, gait disorder and loss of balance. I also suffer from bouts of anxiety and am celiac.
Here is a typical day for me:
6 am: Within 15 minutes, my toes on both feet curl under, all the way under. OMG, it hurts. Then my feet cramp, twist and go on their side. If I needed to go anywhere, I’d use my wheelchair. I have a travel wheelchair that folds up and we take it on outings just in case. With very, very, painful foot cramping, you don’t know how long it will last. Sometimes it seems that it won’t end at all. The dystonia cramping can happen up to several times a day. I do my meditation and breathing to help me get through it.
7 am: I begin taking the pills I take every three hours throughout the day, and once during the night. My first medication is Levodopa for Parkinson’s.
8 am: I take pills for stomach acid, vitamin B12, iron supplement, and magnesium.
When the dystonia stops in the morning, I go to the Y gym across the street at Carlingwood. I do weights three times a week, and a 30-minute walk or stationary bike when I can.
I have also been going to the Good Companions Centre on Albert Street for about three years now, even though I’m younger than most people there. For me the Good Companions is a safe and happy place both for people of any age with disabilities, as well as seniors. It has given me so much confidence, despite my anxiety.
10 am: I take my second Levodopa, my first calcium pill and Rocaltrol which helps bones absorb calcium, and the first of three anti-nausea pills.
1 pm: Another Levodopa.
4 pm: Another Levodopa, and another calcium and Rocaltrol.
7 pm: My antidepressant pill, and anti-anxiety pill as needed.
10 pm: My last Levodopa of the day.
Some days I need a nap, some days I don’t.
One of the things that surprises people and is difficult to understand is the unpredictability of my symptoms, both physically and mentally.
For instance, when I was flying to the Dominican Republic on a family trip, my legs were so seized up from dystonia that the flight attendants had to carry me up the stairs to my seat.
It took two big strong men to lift me up in the wheel chair and onto the plane. As soon as I was in my seat, buckled in and feeling safe – POOF! – the dystonia was gone, just like that. When we landed, I was fine and walked off the plane. It must have been quite a show for anyone who saw how I was carried onto the plane and was walking on my own when I left. I have to deal with that kind of situation every day.
Anxiety also comes and goes, and so at the theatre, synagogue or a restaurant I like to sit on the aisle so I can leave quickly. I find I find I’m less anxious in the morning and at noon than at evening activities. I never had anxiety before but it is now a big part of Parkinson’s and I now have pills that help.
One of the best things I do about the dystonia attacks I learned from Eric Peters, my yoga therapist. I learned how to relax and use yoga breathing to fight my worry and anxiety. What Eric taught me helps the episode end more quickly. Before Eric, I used to get panic attacks, fear of unexpected dystonia in unexpected places. He told me to take a picture in my mind of where I’m going to tell myself I’ll be OK.
Over the years I’ve learned to cope with my symptoms. I now feel I belong and am included.