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It’s Another Parkinson’s Awareness Month for 2022!

Man, I can’t believe its 2022 -seems just like yesterday I was a young 21 year old slick-looking (but kinda geeky) “punk” who had just graduated from college, and working at his first computer job… Now look at me!! (Uh oh, I guess I’d better not go down that road or I’ll be moaning and groaning on and on forever!) Ugh… Anyway, it’s April 2022, and that means it’s time for another Parkinson’s Awareness Month! 
 
So, as I usually do, I’m re-re-publishing my usual PD Awareness Month post; but updating it quite a bit for 2022!
 
The reason that I publish this blog post every April is to remind us all of what Parkinson’s Disease is, and how YOU can help in this fight. For those of us with PD, every day is a constant fight and continuing battle with the disease. So do your part if possible – give of yourselves to the Parkinson’s community and help us win this fight against PD!
 
So what is Parkinson’s Awareness Month anyway? Well, each April is designated as the month used to raise awareness about the realities of Parkinson’s Disease, and what we ‘Parkies’ – as we call ourselves – have to deal with each and every day just to maintain a decent life. So in this post, I’m going to give you some ways to become more ‘aware‘ of Parkinson’s, and how you can help the fight!
 
First let’s quickly review exactly what Parkinson’s is:
 
 
Parkinson’s disease (PD) is a neurodegenerative disorder that affects predominately dopamine-producing (‘dopaminergic’) neurons in a specific area of the brain called substantia nigra.
 

Symptoms generally develop slowly over years. The progression of symptoms is often a bit different from one person to another due to the diversity of the disease. People with PD may experience:

  • Tremor, mainly at rest and described as pill rolling tremor in hands. Other forms of tremor are possible
  • Bradykinesia
  • Limb rigidity
  • Gait and balance problems
  • Dystonia (muscle cramping)

The cause remains largely unknown. Although there is no cure, treatment options vary and include medications and surgery. While Parkinson’s itself is not fatal, disease complications can be serious. The Centers for Disease Control and Prevention (CDC) rated complications from PD as the 14th cause of death in the United States. 

Courtsey of Parkinson’s Foundation

 “OK,” you say, “now I know what PD is… but what can I do in this month of April to help in the fight against PD?” Well, you’re in the right place, my friend, and I’m glad you asked that question! So to get you started, I’ve come up with Tom’s “Top 4” list of things you can do to help:
 
1. Learn.
While there are a number of people who do know quite a bit about Parkinson’s, there are many, many more 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. In fact, before I got PD myself, I had heard very little about Parkinson’s and didn’t know anything about it! So if you want to learn more about PD, Google Parkinson’s Disease and review some of the information out there. Or, better yet, go talk to a Parkie and learn first hand from a pro!   Trust me, that will really give you some info about what PD is and it’s effects upon those of us with the disease.
 
Here’s a staggering statistic: Did you know 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! That’s a lot of chump change, folks… And that’s just Parkinson’s itself – if we included other serious neuro diseases, such as Alzheimers, I’m sure that amount would blow our minds! Just think –  if we can find a cure for PD, not only will it save millions of folks the pain of living with the disease, but we as a country can save $25 billion to spend on other neccessities!
 
So spend some time this month learning more about Parkinson’s, it’s symptoms, it’s treatments, and the research going on to find a cure. To get you started, here are a few links for you to investigate:
 
Parkinson’s 101
Understanding Parkinson’s
What is Parkinson’s Disease?
 
 
2. Participate
This one can be a little harder… not only does one have to get up off the couch and actually DO  something (myself included – oh my aching back!), but it can also be a tiny bit scary. But hey.. we need you, so get out there and be involved! “But what can little old me do to help?” Another good question – y’all are batting 1,000; so here are a few ideas to get you started participating:
 
  • Sign up and attend an educational or fundraising event – either in person or via a Webinar.
  • Join millions of people on Facebook, Instagram, Linked In, and Twitter. Share your messages of support using the hashtag #parkinsonsawareness to help increase awareness.
  • If you have one, wear your Parkinson’s Awareness bracelet, necklace, or whatever daily – remember gray is the Parkinson’s Awareness color!
  • Start a conversation with someone about Parkinson’s.
  • Write a letter to the Editor of your local newspaper.
  • Petition your mayor or governor to declare April Parkinson’s Awareness Month.
One of the BEST ways to participate is to be involved with clinical trials. Did you know that research into that elusive cure for PD is hindered because the folks involved in that research don’t have enough candidates for the related clinical trial? “But Tom,” you say, “I don’t have PD… How can I participate?” Well, one way is to use the Michael J Fox Foundation’s Fox Trial Finder to search for trials in your area. But here is one of the best ways to contribute – and anyone can participate, even those of you who don’t have PD: The Parkinson’s Progression Markers Initiative (or PPMI)… This study, sponsored by the Michael J Fox Foundation, is designed to identify biomarkers of Parkinson’s disease onset and progression — a critical next step in the development of new and better treatments for PD. And that study is recruiting people with and without Parkinson’s disease. If you’re interested, I’ve included links to the PPMI project at the end of this post.
 
Who knows? Your participation may be the key that finds the cure for PD that we all need!
 
3. Give
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:
 
4. Care
And don’t forget your favorite Parkie, whoever and  wherever 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!!
 
 
 
World Parkinson’s Day
Finally, World Parkinson’s Day takes place on the 11th of April every year to raise awareness of Parkinson’s. This day, reconized internationally, is a GREAT time to signal your commitment to a future without PD. If you are thinking about donating to one of the PD organinzations, April 11 would be the day to do so! But regardless, when you’re out-and-about this coming Monday… Take some time out to consider Parkinson’s Disease and the millions of us living each day with PD – by LEARNing, PARTICIPATion, GIVing and CARing for those Parkies in your section of the world!
 

 

Well, I’ve come to the close of this post; and I hope I’ve given each of you something to think about this April… For more info, or to participate in any of those activites I’ve mentioned, check out the links I’ve included at the end of this blog post.

 
So now you have no excuse!! Get involved this month! Join the conversation! Learn more about PD and it’s symptoms! Give something for research! You (and we) will be glad you did!
 
 

PPMI Clinical Study (MJFF)

Parkinson’s Foundation Awareness Guide (PDF)

PD GENEration: Mapping the Future of Parkinson’s Disease

You Can Help Us End Parkinson’s

"Not enough people understand what it’s like to live with Parkinson’s. They don’t know it’s a serious condition. They don’t realize that treatments are limited and that there is no cure"

- Parkinsons.org
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tom

"I believe that no matter what may happen to you, life should be lived, and lived to its fullest. Don’t just exist – have fun! Live your own life passionately; laugh long and loud and often; enjoy family and friends; and most of all, love – not just others but yourself as well. Remember, even with a chronic disease, there is NO ONE else like you!" Deep Brain Thoughts is one of my ways to help others live life with Parkinson's (PD); to give me an outlet for the things I believe in; and to show my loyal readers what inspires me in a world that sometimes seems out of control. So… sit back, relax, take your shoes off, and let's journey on.

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