On March 18th this year, I will be celebrating my 10th anniversary of being diagnosed with Parkinson’s disease. To me, this sounds ludicrous. The concept of time has a funny way of distorting your reality. It feels like it was just last week when I received horrific news from my Neurologist but at the same time, I can’t believe I’ve had PD for a decade… A DECADE! Do you know what I could do in 10 years?
I could go back to school and get my Doctorate in Mythological Studies, but that would be pointless seeing as I know that unicorns exist. It’s their pesky relatives the Pegasus that I’m on the fence about. I’m wondering if you have more than one Pegasus, would it be known as Pegasi?
I could jump in my starship spacecraft to Mars and then back to Earth, which would be crazy cool but I don’t know what zero gravity would do to my hair. I can’t handle 10 years of frizzy locks… everyone has a breaking point.
I could adopt a Capybara and give it kisses on its adorable rodent lips for the entirety of its life. It’s like a huge guinea pig… who wouldn’t want a bit of a cuddle?
A decade in review
When I look at my journey over the last 10 years, I guess I didn’t know what to expect when I officially got diagnosed with Parkinson’s. Would I be in a wheelchair, not able to maintain a job or requiring a full-time caregiver? Your mind goes to the worst possible reality. Would my parents find me in my apartment covered in Cheetos dust refusing to leave the house? Ok, so there are worst things than death by a cheesy poof. The point is, I’m thinking about what I have learned in the last decade.
There’s no way to know what will change in your life because of PD, but now looking back, I can share my experience with you. This is some of the madness that I have learned by having Parkinson’s for the last decade.
-You will find a way to get through it: When you first hear that diagnosis, it can feel like you’re being mauled by a bear. Just remember that you will get through that difficult time and find your own way to cope with Parkinson’s while enjoying your life.
-Exercise is not a choice: Period.
-It’s a good time to have Parkinson’s disease: Within the last 10 years of my life, there have been a plethora of medical advances and how we treat PD. Just think what the next decade holds.
-Keep your wolfpack strong: You need to find the right team to join the fight. Movement disorder specialists, therapists, friends, or family just to name a few. Keep adding resources that you can utilize when times become challenging… maybe even that adorable Capybara you adopted.
-It’s ok to laugh at yourself: I do it every day. Just like when I was working out and I could feel a hair in my mouth. I try to pull it out, but then realize it is actually a hair attached to my upper lip. You can’t not laugh at that.
-Be grateful: No matter how bad you may feel, there is always something to be grateful for.
-Be your own advocate: Educate yourself and find the resources available to you.
-Change your negative thoughts: If you read my post “Not why me, but try me” you will learn how easy it is to get into a negative state of mind. Put some time into surrounding yourself with positive energy. The payoff will be huge.
Now it’s time for me to just sit back, kick up my feet, enjoy my celebratory Fro Yo and think about the next decade of not just surviving but thriving with Parkinson’s. Cheers!
I’ve been diagnosed for 10 years also (50 yo female). When I was diagnosed, they said there would be a cure in 10 years. So, I’m just waiting for the morning that I wake up and I’m all healed :-P.
March 18 is also our 41st wedding anniversary. It’s however the first year we are celebrating with my PD diagnosis. Thanks for writing and keep it up. The best thing we have is our sense of humor.
I haven’t been diagnosed yet but pretty sure that’s what I have! My challenge right now is shaking in my left hand! Do you have this issue? If so how do you cope?
Dar,
I don’t have a tremor in my hands, but that can be a symptom oF Parkinson’s disease… I would recommend you go to a Neurologist and get more information. Keep us posted!
I’ve followed you for a while now. We seem to be in the same stages. I too have been diagnosed for ten years now! Seems like yesterday! One day at a time! Keep up the great work on the blog! You’re an inspiration to many!
Melonie,
Thank you for reading my blog!
Thanks for sharing your optimism! I have had PD for 18 years, DBS surgery four years ago . I was diagnosed at age 47 .It’s been a challenge some days, but what a change since my surgery! We all just
Keep on keeping on!!
Eileen,
I’m happy to hear that your DBS is working for you. Thank you for your comment.
short and positive – sweet. as always – you rock Perky
Thank you Roger!
Allison –
wow 10 years, think of the thousands of smiles you’ve put on people’s faces during that time, I know you’ve given me my share!
Thanks and here’s to the next 10. Cheers!
Awwww, Dave, you made my day! Thank you!
Happy anniversary, Perkie! I too recently celebrated (or should I say observed) the 10 year anniversary of my PD diagnosis. I can concur with all you said especially about having a positive attitude, the willingness to laugh at yourself and the importance of exercise. Also, surrounding yourself with other parkies who are as perky as you is esssential! Enjoy your Fro Yo!
Thank you John!
Your perspective is refreshing, especially when there is so much that can be seen as dreadful about this disease. At my own ten year mark, I battle with my symptoms every day, trying to still teach and keep up my other responsibilities. You give me a needed boost! Thanks. We’re in this together.
Garrett,
We sure are in this together! Thank you for your comment.
In my conversations with other people, when describing the trials and tribulations of being “one of them,” your name invariably pops up. After telling people how hard it is to fight off Mr. P,, I point to you as one of my heroes in the war on Parkinson’s. Parkinsons is tenacious, but not as tenacious as you. Your story, which really has been the decade from hell for you, should remind all of us that your days and nights are you make them, not what Parkinsons makes them. “What would Allison do?” often pops into my head when things get rough, which lately, is more often than not.
Happy Anniversary champ!
Thank you Pete! What a sweet comment.💕
I have Paarkinson ‘s for 7 years plus two years of not knowing I had it. When I would go to the doctor’ appt. every three months there would be five lost pounds, (from l86 to 146) and the NA could not understand the reason why, although I gave her detailed data of having to stop walking and having to wait to get started back, of using the bathroom l8 times in a 24 hour period, having trouble driving my car at times for steering and braking episodes. In looking back it’s a miracle I did not kill my wife and me with the car. The only thing to help was the physical therapy she kept me on including therapy for a bad rotator cuff. My doctor quit seeing patients and asked me to start seeing her as my doctor since he was only doing the upper and lower GI procedures and in my respect for his confidence in her I said yes while others said ” Hell no, I am paying to see a doctor and will go find another one”. My two daughters took charge of things and took me to my heart doctor in another town and after running me through some tests said there was nothing wrong with my heart system but appears to him that I had symptoms of Parkinsons and referred me to a neurologist to check me out and the rest is history. There was anger on my part but my friend said she was very likely doing me a favor in her ignorance by having me do the therapy so I calmed down and said it is what it is let’s start fighting it. Thanks of allowing me to rant and I feel better now!
Thomas,
What a story! Thank you for sharing.
Thanks for sharing your optimism!
Thanks for laughs, the info, and keeping up with the advocacy!! Happy to have your blog for the last 3.5 years.
Dan,
Thanks for keeping up with my blog. It means a lot to me.
Today March 5th. Is my 62nd birthday and my 12th.year anniversary since being diagnosed with PD
Still very active because I refuse to let PD control me it’s been a long fight but I’m not ready to give up
Great attitude Andrew!
My one year anniversary is coming up but it just seems like yesterday Having been dianoised with thyroid cancer at the same times. A lot has happened. Having to deal with the thyroid first then my Parkinson. My team, family and doctors, we are still trying to figure out what meds will work best for me. It’s up and down but I think and feel like we’re making headway. Stay positive and always think of one thing to be thankful for when I wake up
Vickie,
You keep up that positive attitude and take it one day at a time.
Allison, what a brilliant and positive “Look Back”. Your compendium of “Madness you have learned” is nothing short of awe inspiring for all. I so much admire your strength and courage. Strength doesn’t come from what we can do. It comes from overcoming the things we once thought we could not do. You have set forth a wonderful shining pathway of hope and determination. Having only been diagnosed three months ago, I have found your sharing of what you have learned to be informative and also uplifting with a great infusion of positivity. After reading this I feel greatly encouraged. Thank you once again for all your do for our Community.
“Courage is knowing what not to fear.” – Plato
Wayne,
Thank you for such a sweet comment. I am happy to hear that my blog encourages you. Thank you for reading!
You’re dumb. If that was my capybara, I would name him Snarky and we would sit on our rocking chairs, eating Skittles, and making fun of people who walked by. I would snort when I laugh and Snarky would snort and laugh at my snorting when I laugh.
John,
It sounds like a perfect way to spend 10 years!
I had symptoms over a decade, but diagnosed in 2015. 5 years feels like 10 due to all the challenges, but today I am so much better off than 5 years ago. Thanks for sharing your story.