I am a 67 yr old male that was forced to retire in Dec 2006. I received my PD diagnosis while getting a second opinion about having back surgery. In July 2007 after much prodding from my bride(30+yrs) and my neurologist I started the Comal County Parkinson's Support Group. Thought I'd get it going then bow out after 3 or 4 months and go hide in a hole somewhere. Nine years later we have grown from 6 to having over 900 folks registered with us(this includes spouses, caregivers and a few adult children). We have gone from meeting once a month to twice a month.
We are averaging 45 attendees at our meeting on the second Saturday of the month and a many as 60 attendees at our meeting on the fourth Saturday of the month.
In 2017 we are planning a gala event to celebrate our tenth anniversary.
Not bad since when we first started people told us we would not last a year.
We try and have a speaker at one of our meetings. We have had a neurologist, a psychiatrist, a physical therapist, a social worker, and a mobility aids company as some of our speakers.
What started as a laborious project has turned into a project of love. I do get frustrated with what appears to be apathy among our members, but then I have to remember that at 60yo I can't do half of what I could at 49 and I am the youngest member. Our average age is probably 74. And everyone of our members is a SWEETHEART and after each meeting everyone makes sure they shake my hand or give me a hug and thank me for what I have done. And you know...I didn't do anything except find someplace to hold a meeting. In 2009 we have had a PD Awareness Picnic in April, participated in a Walk a Thon in San Antonio, had a symposium in New Braunfels in October, We aren't much help raising funds for research, but we sure are good for each other. My bride of 32 yrs is my best friend and biggest fan. She does not baby me and makes me be responsible for managing my own healthcare. She has noticed and commented on my memory loss and she reminds me that I am not the same person I was even 1 year ago. That it is ok for me to slow down occasionaly and take a nap or just sit and read for a couple of hours. It is hard to do since I have been my worse task master for many years. But I am learning.
I had DBS on May 6, 2013 and am a new man. My DBS results have been spectacular. It is like the clock was moved back at least 15 years. I can walk, talk and even write my name. Without a doubt DBS is the best thing I have done.
I would have DBS tomorrow if mine failed today. My DBS may not be a cure and it has it's issues(mainly fatigue), but my life today is so much better than it was pre DBS.