I have started this so many times.
When your history with this disease spans 27+ years, it takes a whole lot of effort that I just don’t want to spend right now.
Here’s the highlights.
First symptom was a tremor in my left pinky around age 20.
Started looking for a diagnosis and didn’t get anything for 15 years, where I was told I had essential tremors. Looking back now, I didn’t describe any other symptoms because I didn’t know they were symptoms at the time. My digestive system, spacial awareness, dystonia, night terrors, cognitive challenges were all getting worse over time. I couldn’t tolerate the meds as they were prescribed, so I went without.
At age 38, symptoms started to include freezing. I couldn’t feed myself, dress myself, shower or walk independently. Couldn’t drive safely or write my own name. All my left shoes were worn down more than my right.
Was prescribed a medication that took nearly all of my symptoms away. For the first time in my adult life I carried a full mug of tea by myself.
At my 3 month follow up the MDS said I was faking, banned me from the practice and told I couldn’t get refills.
Saw another MDS in another state, started C/L and did a DatScan confirming Parkinson’s.
After months of depression, I start Rock Steady Boxing. For a lot of reasons I HATED IT.
I make a ton of progress in my first year.
I’m now a huge advocate for Rock Steady Boxing for a lot of reasons.
I now give speeches, interviews, podcasts, and have been published in the Rock Steady Boxing international magazine “In Your Corner” twice telling anyone half listening about the program.
I carve eggshells, live in my dream home with husband and cat. I’m not religious. I’m not shy and will give my opinion without hesitation. I don’t blend in and don’t try to. Ask me anything.
Wow Jen what a journey you’ve had! You must be an incredibly strong person to have gone through all that. Welcome to the forum! I’m happy to have met you and I’m so glad that you’re here. Thanks for sharing your story!
Thanks, Mike, that’s kind of you to say! I left out quite a bit, actually… I’m sure all will be revealed in due time.
Hi Jennifer, so sad you’ve had to go on such a journey but it sounds like you’ve got to a good place. Eggshell carving sounds an unlikely hobby for someone living with Parkinsons!? I have enough trouble writing doing up my shirt!
Yes, that’s partly why I do it, to show the public that Parkinson’s looks different in each of us, and can be an invisible disease.
Wow, what an amazing intro! I’m glad to meet you. Any tips for getting a loved one with Parkinson’s to try Rock Steady boxing? Thanks in advance!
Hi!
Gosh, where to start?! I am fully convinced that every PWP can benefit from Rock Steady. I have seen it with my own 2 eyes, and experienced it first hand. Easy for me, I’m young and able-bodied still. Let me tell you about a few people I have known through this program.
Carol, who could hold a plank longer than my coach and had grandchildren my age worked her way from a wheelchair, to a walker, to assisted walking in a year.
Kathleen, who literally leaned on her husband for support standing and walking was running down the beach 6 weeks after her first day. She was 65 when she started.
Bob was in WWII and does more jumping jacks than me.
I have REDUCED my medication every year since diagnosis.
I’m not going to lie. It takes A LOT of hard work. That doesn’t pay off in big ways right away.
Could you do hard work on your own? Sure. But few would work hard enough, long enough, to the point that we need to get to in order to release dopamine with enough regularity to have sustainable results. It’s called forced intensity for a reason.
The environment itself is healing, in addition to the exercises. At other gyms people stare at your tremors. Assume you’re mad with facial masking. Get shocked when you fall. We get pitied and catered to. Things are made easier to accommodate us.
At Rock Steady Boxing, no one feels sorry for us. Our coaches challenge us to punch harder, faster, longer. They bring out parts of ourselves we lost, challenge us because they know we can, and want to do more. They see us as fighters, not patients. Empowerment restoration.
The boxers know the struggle to drag yourself into a class with no sleep, nausea, pain, confusion, stiffness. We understand why he can’t jump rope or she forgets the combo. We see incredible progress, physically, mentally. We trade illness notes, give each other forgotten meds, and hope for good doctor’s appointments. We have our own shorthand language that doesn’t need explanation.
Challenge them to go consistently and give it all they can for 6 weeks. No excuses, every class for 6 weeks. I guarantee they will get results.