I was recently diagnosed - October 13th to be exact - so I'm new to the forum. A little about me and what led up to the diagnosis. I'm a 54 yo women living in the Midwest. 2016 is a year that I am glad to put in the books. In April I was laid off from my job at a company I had worked for 13 years. Not the worst thing in the world but difficult to find a corporate job at my age. Having time off provided me time to travel back East and help transition my father to a memory care unit of a nursing home. He declined quickly and passed away at the age of 80 after 4 months in the facility. My father had been diagnosed with PD at the age of 48 and had PD Dementia at the end. At the funeral a family member casually mentioned to my husband that they had noticed a twitching in my index finger. A week or so after the funeral my husband asked me if I had noticed, which I had not, and chalked it up to stress, lack of sleep and/or too much caffeine. It persisted and my husband and I both noticed it so I agreed to see a neurologist - mainly to appease my hubby. My husband is on staff at a major medical center with one of the best Movement Disorder Centers in the country so my appointment was with a MDS. After the initial neurological exam (which reminded me of a DUI test) the doctor informed me that I most likely had PD. While the MDS seemed fairly certain of the diagnosis they still wanted to run blood work (to eliminate thyroid issues), an MRI and a DATscan. Like most of you my DATscan came back abnormal suggesting possible Parkinsonian syndrome. We were shocked and a bit overwhelmed at first - to get this diagnosis 6 weeks after burying my father after his 32 year battle with the disease seemed the ultimate irony. Even though my father had PD I was never worried about it as no one else in his family had PD or any neurological disease. No genetic testing was done on my dad as it was assumed the disease was idiopathic.
The good news is that the PD was caught very very early and for the time being is very very mild - just a slight tremor in my hand and right foot. The only script I have at the moment is propranolol. Since my diagnosis I have been religious about exercising as that is in my control. I'm not sure if it is better or worse having already witnessed someone I love battle this disease but I remind my family that this is my PD not my father's.
My husband and family have been great, I feel the most for my husband and potentially what is in store for him and for my mother who not only was a caregiver for 32 years but now has the pain of seeing her child battle PD. At first I only wanted to tell family but my husband nudged me along to tell friends - after all there is no shame in it. I am drawing the line at work friends as I am still actively seeking employment and do not think most people understand PD. I am glad I shared the news, I don't want pity or sympathy but rather support and greater understanding for PD.
So now I am a member of a club I never wanted to join and now that I am in it don't want any more members. I have joined a Young Onset PD group and my first meeting is next month. I am not bitter or angry as that does me no good. I accept this diagnosis but that does not mean I am resigned to it. My father until his last breath believed in a cure. I am my fathers daughter and am hopeful for a breakthrough in this battle.
Thanks for all of your posts - I've read many of them. It is a comfort to know I am part of a larger community.