Well.... in the noise of all this coronavirus stuff going on, you may have not realized that April is, once again, "Parkinson's Awareness Month". Even I, your famous (well, maybe not 'famous',,,) Deep Brain Thinker, didn't himself remember that this was the month until (gasp!) yesterday! I guess that is what happens when you are stuck at home under a "stay at home" order! Heck, I'm even having trouble remembering what day it is - they all seem to string together!
Anyway, I thought I would re-publish a 'modified' entry from a previous PD Awareness Month blog post just to remind us all of what PD is, and how YOU can help in this fight against PD. I know that in this continuing fight against COVID-19 it may be difficult to think about other battles... but those of us with Parkinson's have to fight not only to keep from being infected with this virus, but also have to fight - every day - this continuing battle with PD. So do your part - stay at home, maintain social distancing, stay healthy - but also give of yourselves to the Parkinson's community and help us win the fight against PD!
Every April is the month that is used to raise awareness about the realities of Parkinson's Disease. So before I give you some ways to become more 'aware' of Parkinson's, let's review exactly what Parkinson's is:
"OK now I know what PD is... but what can I do in this month of April to help in the battle against PD?" Well, I'm glad you asked that question! There are a number of ways to help, so here are my "Top 4" things you can do to help:
While there are a lot of people who do know quite a bit about Parkinson's, there are many people who may have heard of the disease, but know little or nothing about the condition itself and how affects a person and the people around them. So review - or even print out - the information in the chart above and it will help you remember what PD is and it's effects upon those of us with the disease.
Another staggering statistic to know is that the cost of Parkinson's to the health care system in the US alone, both directly and indirectly, is nearly $25 billion per year and growing! WOW!
So again, spend some time this month learning a little bit about Parkinson's, it's symptoms, it's treatments, and the research going on to find a cure - either via the Internet or literature. There are even web-based seminars or webinars where you can learn a little bit more about PD!
Here are a few links to get you started:
This one can be a little harder... because one has to get off the Lay-Z-Boy (myself included) and get out there and be involved! But hey - you're at home these days anyway due to COVID-19, so why not use that time to participate in a PD event? So, to get you started, here are some ways to get participating and involved:
Sign up and attend an educational or fundraising event - either in person (once it is safe to do! or via a Webinar
Wear your Parkinson's Awareness bracelets - remember gray is the Parkinson's Awareness color!
Start a conversation with someone about Parkinson's (either virtually or while maintaining a safe 6-foot distance!).
Write a letter to the Editor of your local newspaper
Petition your mayor or governor to declare April Parkinson’s Awareness Month
Another way to participate is to be involved with clinical trials. Did you know that a lot of research in PD for that elusive cure is slowed down because the folks involved in that research do not have enough candidates for the related clinical trial? "But Tom," you say, "I don't have PD... How can I participate?" Did you know that every valid clinical trial not only involves the people who have the disease, but also people who don't have PD to be used as 'control' subjects. I've read that this is one of the biggest needs in clinical trials - individuals who are not affected by the disease but participate anyway so that the researchers will have a 'baseline' of what that treatment or drug does. So if you have PD or not, but want to be involved in the research, you can use the Michael J Fox Foundation's Fox Trial Finder to search for trials in your area. Who knows? Your participation may be the key that finds that cure that we all need!
This one seems pretty obvious - use this month to give to organizations involved with Parkinson's research.The only way that we will ever beat Parkinson's, or Alzheimer's, or any of these devastating neurological diseases is if the researchers have the funds to do the research. So help raise funds for better treatment, research, and to reach more people that are affected by the disease.
Here are some of the organizations I would recommend:
Michael J Fox Foundation for Parkinson's Research - 85 cents of each dollar goes to research!
Michigan Parkinson's Foundation (Michigan) - All the funds gathered at the MPF are used to help patient's and their families right here in the great state of Michigan!
Parkinson's Foundation (National)
And don't forget your favorite Parkie, wherever and whoever they are! Let them know you care... You can even give funds in honor of them! And remember that we Parkies can always use a smile and a hug!!
How can one remember all this? Well, this year the Parkinson's Foundation has issued a cool calendar for the month of April 2020 with some things to do or remember each day of the month! So now you have no excuse!! (Click the image below to download the calendar in PDF format)
So get involved this month! Join the conversation! Learn more! Give something for research! You (and we) will be glad you did!
Some Important Dates To Remember for 2020
Parkinson's Awareness Month 2020, Wednesday April 1 - Thursday April 30
Parkinson's Awareness Week 2020, Sunday April 5 - Saturday April 11
World Parkinson's Day 2020, Saturday April 11
Additional Info on Parkinson's Awareness Month