Parkinson’s Awareness Month for 2023 has arrived!

Yep, it’s your Deep Brain Thoughts author, Tom, back at his blog writers desk, furiously typing away at the old typewriter! (Oops, wrong century… I meant computer). I’ve been gone way too long… but with it being Parkinson’s Awareness Month, I had to ‘jump back into the game‘ as they say.  And as I always seem to say at this time of the year: Good grief, 2023 already?!? Of course,  when I look in the mirror every morning and see that familiar but also strange old guy staring back at me, I’m constantly reminded that I am… well, let’s just say, ‘up there in years‘!
 

Ugh… Now, where was I?? Oh yes, it’s April 2023, and that means once again it’s time for another Parkinson’s Awareness Month

 
Normally at this time – well, at least for the last few years anyway – I’d rattle on about all the things we can do this month to become more aware of Parkinson’s disease. But I’m sure most of you have read my other Awareness Month posts, so I’m only going to touch on that topic briefly this time. Rather, I’m sure there may be some of you out there who may have just been diagnosed with PD, or maybe had a loved one diagnosed recently. So, as my sort of ‘Awareness Month‘ participation, I’m going to give you some pointers for living well with PD. I realize that can be a hard thing to do – I should know – but it can be done! And it’s a MUCH better way to live, let me tell you! So, let’s get started!
 
First, let’s remember (or learn) what Parkinson’s Awareness Month is. Every April is designated as Parkinson’s Awareness Month – a time for all of us to become aware of what Parkinson’s disease is, how it affects us ‘Parkies‘, and what we can do to give of ourselves and help win the battle against this disease.
 
Now, let’s again quickly review 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. 


Courtesy of Parkinson’s Foundation


OK, know that we’ve been reminded of that, let’s also  remind ourselves (courtesy of last year’s PD Awareness blog post) of some of the things we can do this month to become more aware:

 

1. Learn

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. This is where Google (or Duck Duck Go, or Bing, or whatever your favorite web search tool) is your friend. But if I were to suggest anything myself, I’d start at Michael J. Fox Foundation for Parkinson’s Research, or the Parkinson’s Foundation.
 

2. Participate

Get on out there and do something to help in the battle! For instance,
  • Attend a PD fundraising event
  • View some online webinars on PD
  • Write a letter
  • Start a conversation with someone about Parkinson’s.
  • Become part of a clinical trial – even those without PD can do this! For instance, participating in the MJFF PPMI study is a good way to help!
 

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. Here are some  organizations I would recommend:

4. Care

Finally, find your favorite Parkie, whoever and wherever they are, and let them know you care… You can even give funds to some Parkinson’s organizations in honor of them! And remember – 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, recognized internationally, is a GREAT time to signal your commitment to a future without PD. Again, if you are thinking about donating to one of the PD organizations, April 11 would be the day to do so! But regardless when you’re out-and-about this coming Tuesday… 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!
 

My Contribution
So, this year I want to do something different than previous years in the blog. You all know that I work hard to try and be an optimist (sometimes I’m successful; sometimes I’m not… but that’s OK), and live life as best as I can with this disease. I feel there are those reading this blog who may have just been diagnosed, or have been living with PD for a short time, or who are scared and discouraged because they have PD. Well, for World Parkinson’s Day (WPD), I’m going to give out seven of my ‘secrets‘ to living a full life even with Parkinson’s. Consider it my contribution in honor of the day!
 

Secret #1: Being diagnosed with Parkinson’s is NOT a death sentence

A  lot of folks (including myself), upon hearing they have PD, immediately begin counting down their days on this earth as though getting the diagnosis was a death sentence. But I’m here to tell you, folks, it is not – no one has ever directly died because of Parkinson’s! Rather, one MAY – and I say again – may die some day from the SYMPTOMS of PD; but not Parkinson’s itself. And no one knows when or how one may leave this earth – there are plenty of other things, like car accidents, lunatics with guns, airplane crashes, heart attacks, being hit by a beer truck (put that one in there just to see if you were paying attention!), and so on that could take us out before PD’s symptoms could. Most of us don’t sit around and constantly worry about those other dangers (otherwise we’d all go nuts), so why do it with Parkinson’s? Once you realize this, it’s almost a freeing moment for your mind!
 

Secret #2:It Is What It Is

I know, I know, this sounds so easy and simple, one thinks at first it’s just a lot of hot air. But we should remember that, once you DO get diagnosed, there isn’t anything one can do to change their circumstances. There’s no do-overs, no ‘time machine‘ where you can go back and change something… once you got it, you got it. Hence, “It is what it is“.
 
Now, I’m not saying that once you get diagnosed, you just accept that you can’t possibly CHANGE the future as far as your life goes – by maintaining a good health style, exercising, eating right, taking your meds on time – all of this CAN affect how PD affects YOU. Doing these things will most likely make your symptoms flare up less often… you’ll have more energy… and just possibly slow down old man PD’s changes to your mind and body. Accepting the disease is one of the first keys to living a better life with Parkinson’s.
 

Secret #3: Take one day at a time

By this I mean “Be in the moment“. Again,  you can’t change anything in the past, and you don’t know what the future holds… so rather than concentrating on these, Live for Today! The Lord Jesus said, “So do not worry about tomorrow; for tomorrow will worry about itself. Each day has enough trouble of its own.” (Mt 6:34 NASB). Now isn’t that the truth! So live today the best you can; enjoy life to its fullest; and let tomorrow take care of itself.
 

Secret #4: Take good care of yourself

Again, you owe it to yourself to do your best to stay healthy – both in body and brain! Exercise, eating healthy meals, playing games, being active – all of this may just slow down the progression of the disease. I can guarantee you that giving up, worrying, being angry, and the like will only make it worse.
 

 

Secret #5: Stay up-to-date on information about PD

The only way you are going to know what to do concerning your PD is to get out there and learn as much as you can about Parkinson’s. This is exactly what I did when I got diagnosed (after the shock wore off), and I can say for sure it helped me greatly! So, go to seminars; webinars; read books; talk to your neurologist; talk to other Parkies… and most importantly, stay up-to-date with new Parkinson’s research,  and those clinical trials that may open the door to that elusive cure!
 

Secret #6: Don’t become a hermit

One of the worst things one can do after being diagnosed is to give up – get up each morning, eat breakfast, then plop down in the easy chair the rest of the day pouting and worrying. Get out there and live! Parkinson’s is like a giant dragon… and you are that knight on horseback with just a single sword – you look at him and see he’s SO big and ferocious… but you still have to get out there and fight him every day! Don’t let him win the battle early! Fight back and you may just win a few battles here and there, and slow him down a bit as we go on this journey.
 
So go see a movie, start a new hobby, visit with friends and family, take a trip (if able), do anything that brings you joy; but stay in the fight and don’t become a hermit. Believe it or not, being out there in the fight will help you physically and mentally!
 

Secret #7: Remember: YOU ARE NOT ALONE!

Current statistics say 90,000 each year are diagnosed with Parkinson’s. There are those (like me) who have  experienced it for a decade or longer; others only a short time. The most important thing I can say to a newly diagnosed PD patient is: “Remember, you are NOT alone“. I run this blog simply because I want to ‘Give Back‘  something to the PD  community and maybe help those folks who need information about PD, or simply need some encouragement. And there are MANY of us out there. So don’t be afraid or shy. Talk to us; find someone else with PD and strike up a conversation. It will help you feel better, and hopefully let you live a fuller life!
 

Well, that’s it for today, folks. I hope I’ve given each of you something to think about this April, and I hope that my words may have meant something to someone out there who may be filled with fear about a new or recent diagnosis… Consider what I’ve said, and remember: Live life as good as possible each day, and let tomorrow and the past go. And if you need help or encouragement – You are not alone – there are many of us out there willing to lend an ear or a heart.

And for us ‘old timers‘: Get out there and get involved this month! And if possible, give a donation to your favorite PD organization for research! You (and we) will be glad you did!

 

P.S. I’m working on a couple of new posts, so hopefully I’ll be back soon with more ‘Deep Brain Thoughts‘!

 

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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