Our meetings on the fourth Saturday of each month we try and bring a speaker to the meeting who is extremely knowledgeable about Parkinson Disease or some aspect to living with a chronic disease, including elder care and senior living issues. We also have an annual Christmas Party and an Annual Anniversary Celebration the 4th Saturday of every month.
In August 2017 we had our first ever gala event to celebrate our tenth anniversary. We raised over $13K. The money helps pay for programs like boxing and LSVT for those who can not afford it. We are hoping to eventually purchase a building for our meetings and to hold exercise programs etc for PWP's at no charge or on a sliding scale. No one should ever have to choose between eating, medicine or exercise.
Not bad since when we first started people told us we would not last six months
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 68yo I can't do half of what I could at 58 when I started all of this.(Whatever this is). Our average age is probably 74. And everyone of our members is a SWEETHEART and after each meeting I am awe struck by how many want to 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 2007 we had a PD Awareness Picnic in April, participated in a Walk a Thon in San Antonio, and in 2008 we had a Parkinson Disease symposium in New Braunfels in October, In 2017 we had our 10th Annual picnic, We are having our 9th Annual Symposium and we had our 7th Annual Shake Rattle and Walk 5K for Parkinson Disease. Everything our group does we do at absolutely no cost to PWP's , their spouses, families and caregivers.
I have also started the Lone Star Parkinson Society which is made up of people who want to help support the fight to live better daily with PD. We do this thru fundraisers that help support our support group here in New Braunfels and the 3 other support groups we have started over the last couple of years. We are hoping to have two more support groups started by the end of 2017 in two by neighboring towns.
We aren't much help raising funds for research, but we sure are good for each other. My bride of 38 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 okay for me to slow down occasionally and take a nap or just sit and read for a couple of hours. The problem with reading is I can not stay focused and usually fall asleep. She does not understand that it is okay for her and everyone else, but not for me. After all I have been my own worst 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.
I must say I am truly a very blessed man. I have a wife that believes the sun rises and sets with me but is her own champion, and I have what I consider the greatest gift in life. That is the gift of giving of one's self without ever expecting anything in return. Yet what I have received back is far greater than money or anything else.
I refuse to give into this Beast called Parkinson Disease. I will fight until I can no longer fight. And then I will continue to fight.