Bittersweet 16

         Bitter

Exactly 16 years ago on May 8, 1996, I was given that “not so sweet” diagnosis of Parkinson’s Disease (PD) at the age of 46. In celebration of the past 16 years, I participated in a high intensity exercise class, grateful that I still could enjoy such a class.

My ideas about PD have changed as I walked along my PD path.

Then:  I knew nothing about PD and wasn’t aware of any family members or friends who had it.

Now:  I know far more about PD than I ever wanted to know. I have met many inspiring persons with PD and have contact with those with PD on a daily basis.

Then:  I thought that PD was an old person’s disease.

Now:  I know that there is a large group of young-onset folks diagnosed with PD before the age 50.

Then:  I thought that those with PD had the shakes.

Now:  While 70% of persons with PD have a resting tremor, others don’t experience any form of tremor whatsoever. While the majority of people with PD have tremors, they also experience the motor symptoms such as stiffness and slowness.

Then:  I thought that PD only affects movement.

Now:  I have learned that there are many non-motor symptoms of PD are unrelated to movement. These symptoms may include impaired sense of smell, sleep disorders, cognitive symptoms, constipation, bladder symptoms, sweating, sexual dysfunction, fatigue, pain, tingling, lightheadedness, anxiety and depression.

Then:  I thought all people with PD were the same.

Now:  I realize that PD progresses differently in each person. Not everyone experiences all of the same symptoms or has the same severity of symptoms.

Then:  I was a runner and bicyclist.

Now:  I am a walker and dancer.

Then:  I was a public speaker.

Now: I struggle to be heard and understood while speaking in public. I am plagued by my soft-spoken, sometimes slurred voice.

Then:  I was a reader.

Now:  I am a reader and a writer.

Then:  I played the accordion in several bands.

Now:  I am in the audience listening to the music of accordion bands.

Then:  I loved my work and made a comfortable living in a satisfying career.

Now:  I miss my paid employment but enjoy volunteering in the PD and Deep Brain Stimulation communities.

Then: I thought that I could beat PD with a positive mental attitude.

Now:  While a positive mental attitude doesn’t hurt, PD continues to be a chronic and incurable neurological disorder.

Then:  I thought that nothing was worse than a diagnosis of PD.

Now:  I realize that things can always be worse.

Then:  I was worried that I was on the slippery slope to the nursing home.

Now:  I am able to live a productive, meaningful life with PD and have managed to stay out of nursing homes.

Then:  There was nothing I could do to manage my PD symptoms.

Now:  Medication, exercise, surgery and diet can alleviate some of the symptoms of PD.

In some ways I’m better and other ways worse, but I am happy to have survived and grown from the past bittersweet 16 years.