Yep, here it is almost the end of April and the end of my third year going through Parkinson’s Awareness Month (April 1 – 30), and Parkinson’s Awareness Week (April 18 – 24th) and World Parkinson’s Day (April 11th (also Dr Parkinson’s birthday). And today I’m wondering shouldn’t every month, week, or day be Parkinson Awareness month, week or day? I don’t know about you but I’m aware of my Parkinson’s every day, and I don’t think I can get away with ignoring my PD from May to March waiting for the next Parkinson’s Awareness Month. Changing my social media icons doesn’t stop my Parkinson’s and, if we can’t keep the need for a cure in front of everyone all year, how do we expect to secure funding for necessary research, clinical trials etc. Does Congress only meet one month a year? OK maybe so, but they did proclaim April National Parkinson’s’ Disease Month this year. Do I only need to write one blog post a year (or 30 posts during the month of April, or 7 posts during Awareness Week? I don’t think setting aside a month, week or day is the answer!
OK, I’ll take my tongue out of my cheek (or is it put my tongue in?) but I have to say I feel better getting that off my chest. We can’t pretend that PD doesn’t exist the other 11 months of the year, just like we can’t pretend the same for Autism (also April) or Alzheimer’s (November) or Breast Cancer (October) just to name a few. We have made tremendous strides in the past 5 years in PD research because we work to gather the support of family, friends and strangers, not just in April but year around. So, if you didn’t get a chance to change your social icon, or participate in a fundraiser or attend a special PD event this month, you can still do something to help next month, or the month after, or…… Let’s not let up because Parkinson’s Awareness Month is over.
Our East Tennessee Support Group held it’s annual walk on April 16th, it was a beautiful day, we had a great turn out and so far we have raised over $12,500, 100% of which goes to fund research at the seven major Parkinson’s organizations through the National Parkinson’s Unity Walk held April 22, 2016. The National total so far is over $1.2 million. I want again to thank all of my supporters this year, together we will find a cure!
Speaking of the seven major organizations, if you haven’t heard, there is some welcome consolidation going on among the these groups. PAN (Parkinson’s Action Network), primarily our voice on the hill, has become the Policy unit of the Michael J Fox Foundation. In addition, NPF (National Parkinson’s Foundation) and PDF (Parkinson’s Disease Foundation) have signed an agreement to merge during this year. I feel like this is a good thing, all of the organizations have similar goals – Find A Cure- and they don’t need to be in competition.
So we are back from Florida and have been attending the Silver Sneakers Program and using the weight equipment at the local gym. We are shooting to maintain at least one hour per day/5 days per week and we have hit it most weeks so far.
We have rented a town home in Sarasota for a year to give us a chance to experience the area in all seasons, not just when it is cold in TN and warm there. So we will go down and come back up through out the summer/fall seasons plus spend most of the winter there. No plans at the moment to sell the Lake Cottage, but we keep hearing that too many people wait too long to make a decision about moving and end up somewhere they don’t enjoy. We know at some point we need a single story residence and we like the PD community in Sarasota and this opportunity popped up the last week of our stay so we jumped on it. Watch this space for more information about how it all works out.
Couple of last minute items:
1) Partners In Parkinson’s will offer a live video feed on Saturday May 14th. Click here for more information and to sign up. A great opportunity if you haven’t been able to attend a local event.
This year the Fourth Triennial World Parkinson’s Congress will be held in Portland OR, September 20 – 23. Early registration ends July 5th. Mara and I are attending and serving as volunteers. Check out the event schedule and register here.
Finally, I saw this great info graphic on Parkinson’s Journey, a blog I follow by Sherri Woodbridge. This is part of a larger info grapic from the American Parkinson Disease Association. I think it hits the exercise nail right on the head!