Most of you know by now that I have an atypical form of Parkinsons. Unfortunately, MSA progresses rapidly and within 2 or 3 years of symptoms it impairs walking and balance. Most are in wheelchairs by the 4th year and eventually become bedbound. The average person lives about 6 to 10 years after the initial symptoms start.
Its now been 6 years that I have battled with this rare disorder, as symptom by symptom has robbed me of who I was... the strong independent woman, the wife, mother and friend I used to be. I can no longer perform the work I loved for almost 30 years; all the amazing opportunities afforded to me by a corporation that cares about people. I miss hundreds of work friends who became my second family. Our children grew up together, we went to each others' weddings, and we comforted each other through our health problems and the loss of loved ones.
I am still me but in a body that is withering; betraying what I wanted and planned for my retirement years. After multiple falls, I am now wheelchair only. Most days I am in bed 80% sleeping from the severe fatigue. My loving husband retired before he was ready to be my caregiver. He does everything for us, driving, grocery shopping, meal prep, and being my advocate for all the specialists I require for palliative care. The isolation is very difficult for both of us.
Will I see our youngest son graduate from university next year? Will I be at either son's wedding? Will I survive long enough to know the most wonderful love of being a grandmother?
I don't know what tomorrow brings. Each day I do what I can and don't worry about the rest. But I am tired of being strong. I try to focus on joyful and peaceful times instead of everything I've lost. And all my memories of how you have blessed my life.
This holiday season, if you are willing to make a real difference in MY life and in so many other lives on a global scale, please make a donation to The MSA Coalition.
So many of you were very generous on #Giving Tuesday (Nov 27th) when Facebook partnered with PayPal and together they matched donations up to a total of $7 Million.
I thank all of you for your ongoing support .
My fundraiser on Crowdrise will run through December 31st. Because I still have hope reading about recent trials helping Alzheimer and Parkinsons patients.
If you've given on Facebook already, thank you so much. If not and you have any small amount for the Crowdrise campaign, please donate before December 31st. There are so many volunteers (including me) that donate our time to ensure every $ is put to the very promising research that gives me hope for more years.
Merry Christmas and Happy New Year to you and your family.
The Multiple System Atrophy (MSA) Coalition is a 501(c)(3) charitable organization with a 30-year history of devotion to improving the quality of life and building hope for people living with MSA.