Diane’s story reflects a common theme we hear from many people living with Parkinson’s in our community: the road to a Parkinson’s diagnosis is often long, complex and different for everyone. Would you like to share your own experience? Leave a comment below or complete our Moments of Victory® form to be spotlighted on our blog.
Written by Diane Schuirman-Hagedorn
At 42, I found an answer to my nearly six-year medical mystery: young onset Parkinson’s disease.
The first symptom I noticed was pain. At 37, I strained a hip flexor on a summer hike. Within six months, I also had sacroiliac joint pain. Then my shoulder started to hurt, too. My healthcare providers chased the pain. Roughly every six months I was referred to a new specialist and a new physical therapist.
Before I was finally sent to a neurologist, I:
- Saw numerous orthopedic specialists.
- Worked with 10 physical therapists.
- Had x-rays, a steroid injection and five rounds of prolotherapy (injections designed to stimulate the body’s healing response).
- Had 10 MRIs—both hips, lower spine, shoulder, brain. Several body parts were scanned twice.
- Had two EMGs.
- Received regular B-12 shots.
- Was tested multiple times for rheumatoid arthritis.
- Was advised to eat a gluten-free diet.
- Was hospitalized for a skin infection.
- Tried a chiropractor, acupuncture, rolfing, massage and a naturopath.
- Went from walking five miles a day to not being able to walk around the block.
I was and still am working full-time, and I’m fortunate to work in a supportive office. I made it a priority not to take sick days, though I often had medical appointments multiple times a week and needed to recuperate from injections.
Pain, Pain, Go Away
I hurt too much to sit all day at work. I stood during meetings. Some days I worked on my office floor with a yoga mat and a laptop, trying to get comfortable. After months of this, I stopped asserting I was going to get better and reluctantly let the company buy me a standing desk.
When prolotherapy didn’t help as expected, I resisted the advice to have steroid and platelet injections. Instead I took medical leave to complete a pain management program. I had been told pain management was a last resort; it took me a year to get the referral. The pain management program was one of the most helpful things I did and I still use the things I learned.
As I was mastering pain management techniques, I saw a shoulder specialist. I’d had a tremor for two years and I thought it was related to my shoulder pain. It was, but not in the way I thought. The specialist said, “You need to see a neurologist; I don’t do tremors,” and sent me back to my primary care provider for a neurology referral.
Six months later, I got in to see a neurologist. It took one appointment for her to conclude it was highly likely I had young onset Parkinson’s. When I improved after taking Mirapex, my diagnosis was confirmed.
By the time I was diagnosed I already knew I had lost some function on my left side and I wasn’t improving. I was not surprised to hear that I have a progressive disease. In some ways it was a relief to know what to call it and to know how to focus my time and money as I learned to manage it.
I don’t find it helpful to ask why my diagnosis took so long. While living with young onset Parkinson’s disease is certainly a challenge, I choose to appreciate the fact that with Parkinson’s-specific treatment, I have less pain and I’m more physically functional.
Stay Informed On Your Parkinson’s Journey
Our Every Victory Counts® manual gives people living with Parkinson’s, their care partners and their family members the tools they need to take control of their own Parkinson’s treatment through a proactive approach to self-care.
It’s jam-packed with up-to-date information about everything Parkinson’s, plus an expanded worksheets and resources section to help you put what you’ve learned into action. Color coding and engaging graphics help guide you through the written material and point you to complementary videos, podcasts and other materials on the Every Victory Counts companion website. And, it is still free of charge thanks to the generosity of our sponsors.
Request your copy of the new Every Victory Counts manual by clicking the button below.
Diane Schuirman-Hagedorn has young-onset Parkinson’s disease and works as a strategic communications consultant. You can email her here.