You most certainly may ask my story. Note: I tend to be too wordy, so I apologize in advance.
The diagnosis ....
One hot, stressful summer day I was impatiently waiting in line at the post office. When it was my turn, I requested one of those return receipt forms to complete. My handwriting was totally ilegible and the clerk had to complete the form for me. That was when I knew something wasn't right. It was that incident that sent me to a general practitioner (GP). Her diagnosis (dx) was anxiety/stress. Those meds put me in lala land. The GP referred me to a neuro who said it could be Essential Tremor or Parkinson's (PD). THe neuro referred me to a Movement Disorder Specialist (an MDS if a neuro who specializes in movement disorders like PD) who said it could be Essential Tremor or PD. The MDS asked if I wanted to participate in a study, which I did. Part of the study included an evaluation by another MDS. Her dx was definitively PD. She became my neuro/MDS and still is today. It was 2001 and I was 44.
The symptoms ....
Occasionally my handwriting would be bad. But the symptom I noticed most was that I either had to 'bounce' my leg or move my hand somehow (tap fingers or something). This basically was tremor, my primary symptom. Today my tremor is under control by meds. I also have some slowness of movement. Once I was initially dx, I realized I had been having PD symptoms for 2-3 years prior. I have been VERY fortunate to have had a slow progression. (More on that in a bit.)
The meds ....
I started on Requip (generic Ropinerole), a dopamine agonist. Dopamine agonists are often prescribed for newbies. I increased the dosage over time until I maxed out about a year ago. A few months ago I added Amantadine. These meds are doing the trick for now.
Fighting back ....
I wasn't going to take this intrusion on my life without a fight. I became VERY involved in PD stuff ...started a young onset support group which also becaame a 501(c)3 non-profit; lobbied in Washington, DC thru Parkinson's Action Network (PAN); become an advocate for clinical trials through Parkinson's Disease Foundation (PDF); served on 3 local PD Boards; helped organize fundraisers and Symposiums; spoke and wrote on PD issues, etc. However, my greatest fight was when I became a charter member in 2006 of a non-contact, boxing-based fitness program for people with Parkinson's called Rock Steady Boxing (RSB). I credit the tough workouts with slowing my progression and being more flexible, agile, stronger than I thought I could be. It's called 'forced exercise' - forcing myself to work harder and longer than otherwise. We started with 6 people. Ten years later we have 240 people locally. You can 'google' any of the above organizations to get more info.
The message ....
The greatest thing I can stress is that you are your best advocate. Educate yourself. Ask questions. Work WITH your doc. It's your body and you know what feels right.
HOpe this helps. Told ya - more than you wanted to know. Any questions?
Parkinson's Disease Moderator
Diagnosed with Parkinson's disease 2001. Meds: Requip XL 24mg, Amantadine 200 mg
Life is a dance. Don't sit it out. ---- Jackson H. Brown