From Struggle to Support
Diagnosed at 46
Six years ago, I was diagnosed with Parkinson's disease at 46. Now I look back, 10 years prior to my diagnosis, and see early signs - indicators that something was happening to my body.
“Snack Queen” was my nickname. I always had something to nibble on in case I felt shaky throughout my day. Restless leg syndrome and chronic sinus congestion explained my balance issues, body aches and lack of smell. Statements like, “Opps, there goes my shoe” or “can you open this, my shoulder and wrist hurt from holding my new grandbabies” surely didn’t mean anything serious was wrong! I can still remember the look on my doctors face as I explained away, why I couldn’t sit still on the examination table and why I nearly walked into the wall while turning the corner to his office. I believe this is when my story truly began.
I didn’t need a snack, I needed more dopamine! My husband and I sat speechless, as my neurologist rolled his stool close to my face and repeated, “You do understand, you have Parkinson’s!” I think he expected us to fall apart or be overly emotional with the news, but like most trials in our lives, we had confidence and faith see us through. I was always told two things: 1) know your disease better than your doctor and 2) more information is always beneficial. So I took to the Internet, sent for books on the subject and resourced many web sites for young onset patients. Next would be to meet others with like symptoms and see how Parkinson's had changed their lives?
I saw an ad in our local paper in April (Parkinson's Awareness Month). A neurologist in our area was having an open house and all were welcome. I will always be grateful to have found these new faces. They would make living with Parkinson’s easier and become a benefit from having the disease. I went on to join a new young onset group as well as an established Parkinson support group in our community.
I know the medications are necessary, the fatigue and emotional changes all come with the disease. On and off times and the value of a nap each day are part of the package too! But the courageous, wonderful people I have come to hold dear to my heart are priceless to me. Parkinson’s is frustrating, painful, confusing and embarrassing at times. But the gift of support from other sufferers is so valuable and life altering. This is truly the best part of my story I have to share. Parkinson’s will change your life, but don’t pass up the opportunity to be part of a community of rare, brave and, yes, sometimes grumpy people who can make this mountain easier to climb. Lord willing, I can in turn help another with my support to make life a little easier to live.