Many of us can relate to juggling a career while parenting young children. Now imagine adding a debilitating disease to the shuffle, one that takes years to diagnose because you are, supposedly, too young to have it.
Karen Gross of Portage la Prairie, Manitoba was just 34 when, as a teacher and mother of two daughters, her body stopped co-operating.
“I have always been a hypochondriac, so it was hard for me to get my family doctors to take me seriously when I knew that there was something systemically wrong with me,” Karen said. “I was exhausted all of the time, I couldn’t keep up the exercise routine I had been doing for years, and I kept getting repetitive strain injuries that would not heal. The pain kept spreading, and it seemed to be in my joints, so the first serious condition diagnosed was rheumatoid arthritis.”
But two years of arthritis medication just kept making it worse. Then Karen’s doctors decided she suffered from fibromyalgia. When she began experiencing tremors in her left hand and leg, her doctor thought it was probably a side-effect of the arthritis medication. When she applied for a disability pension, the CPP sent her to a rheumatologist who specialized in fibromyalgia. He was very thorough, and told Karen she did have fibro, but that he thought it was secondary to a neurological condition that he couldn’t diagnose.
“I got sent to three rheumatologists, two neurologists, a sleep specialist, a pain specialist, a bunch of other specialists and “ologists,” and I was ready to see a psychologist. I asked my doctor if constant pain could cause insanity. I was only half-joking.”
When Karen was finally sent to the Movement Disorder Clinic in Winnipeg, the neurologist there made the diagnosis of Parkinson’s disease in about 10 minutes. She was 39 years old.
Her illness was hard on the whole family. Her husband, Derek, and two daughters helped with household chores when they could, but it frustrated Karen to feel so helpless. “When I found out that I had a serious disease, I finally had an explanation for why it was so hard to do anything, and gave myself permission to give myself some slack,” she said. The family hired a cleaning lady and relationships improved.
The biggest adjustment came when Karen surrendered her driver’s licence. Depending on others for rides and moving to town so the girls could walk or ride their bikes helped, but it hurt to miss attending their games and activities. This also affected extended family, since Karen could no longer visit her parents as often. She found it especially frustrating during the time her mother was sick and she was unable to be with her. “I was able to be there for her last hospital visit,” she says with gratitude. “… and I was there when she died — that is a horrible but precious memory.”
Karen misses things that once seemed like chores — doing her own cleaning, taking walks, exercising, shopping. Even reading is becoming a thing of the past as she has trouble concentrating. The hardest for her has been not being able to speak easily. “My voice gets worse as the day goes on,” she says, “and it gets really bad when I have to think about what I am saying. Teenagers open up more after midnight than any other time of day, and I think it would be a good thing to think about what I say during our late-night chats.”
Now 47, Karen has plenty of advice for anyone living with PD: “Accept help, let people pamper you, be organized, delegate responsibility, don’t take on projects that have deadlines, get enough sleep, and above all else, don’t worry about the future. Oh, and stop driving!” she adds. “I find it unnerving to see someone who is too weak and shaky to walk get behind the wheel to drive.”