Advice to the Newly Diagnosed
Many people who find their way to a Parkinson’s diagnosis are looking for advice. Unfortunately, each of our situations is unique. However, when it comes to the symptoms that we experience, we can get a taste (or fear) of what is to come. This makes it hard to give universal advice. So, instead, as a guy that’s two and a half years into my diagnosis and eight years into symptoms, I give you five things I would share with my old self (the one who didn’t know he had Parkinson’s) after he left the doctor’s office.
It’s not the end of the world, just the world as you knew it
There’s nothing good about “Avalanche Day” (as I call it). Our new reality hits our world pretty hard. However, diagnosis is just one step in this journey. Yes, it’s easy to say that someone needs to get tough because the journey is just beginning. It’s harder to put into practice, so I’ll advise you to take time to figure it all out for yourself.
When we comprehend what Parkinson’s is, we will need love and support. We will need help to figure out what’s going on. Don’t be afraid to get help, physical and mental, and positive support. I tend to be more stoic. Other people will be more “one day at a time.” This isn’t one size fits all. “Hike your own hike, Dan.”
When our symptoms are named, we’ll need to adjust. That said, as we’re doing that, we need advice to rediscover ourselves. I recommend living. I continue to enjoy most of the same things I did (hiking and writing), as well as new hobbies and interests (musicals and art with my wife). We’re constantly evolving, so go with the new flow.
Commit to fighting back
John Lennon once sang, “Life is what happens to you when you’re busy making other plans.” Just like with every other “random accident”, you pick up and move on. Coping with Parkinson’s essentially requires the same thing for a more serious condition.
My coping mission against Parkinson’s is educating others and advocating about this condition. At my job, I advise students instead of teaching them. With my writing, I teach people about Parkinson’s. My life taught me ways to do this. This and my geeked out story-telling keeps me “Teaching Dan.”
For instance, there was a great article on Huffington Post about not saying “beat cancer” because to not recover from it would be to lose it. This doesn’t mean to not fight it, but to reassess what beating it means if the person passes away. Someday, we will all shuffle off this mortal coil, no matter how much we resist. If we live in the hearts and minds of others, we still live.
Change can be good
I’d like to believe that almost everything happens for a reason. That said, I don’t believe I or anyone else was punished with Parkinson’s, but I do believe it can cause positive changes. For example, Parkinson’s focused me more on what matters in life – at least most of the time. It gave me perspective on situations, and it’s made me more empathetic and compassionate, as well as less angry. Yes, like all changing people, I’m a work in progress. Some days are better than others. However, my goal is to reduce my footprint. How I interact with others matters. It’s not always easy to convey that with Parkinson’s mask and voice (or a hard head), but I’m trying to be less of a bull in a china shop (and not just with my clumsy Parkinson’s gait!).
There’s a great Taoist story about how sometimes bad things can be good and vice verse. I recommend it to everyone.
Others people, like Mo Onsted and his Unsteady Hand organization, redirect a diagnosis into creative therapeutic art options for people with Parkinson’s. His phrase is “we got this”. Parkinson’s changed his life, but he’s flowing with it and showing, no matter what, living well is the best answer. What’s more is that he’s helping other people live well. That’s so cool!
No more time limits
One of my favorite poems of all time is Walt Whitman’s “Song of the Open Road.” Being something of a Kerouac kid and an English teacher, it was obvious that this epic poem would be one of my favorites, but the one line I really like is “From this hour I ordain myself loos’d of limits and imaginary lines” (in part 5).
With Parkinson’s, my biggest mistake was putting my condition’s progress on a timeline. For example, I won’t be able to do this in X years. The reality is we don’t know how long we have left, so the key is to live life and be happy for each day we have. Besides, Godzilla and the monsters might rage tomorrow, and then what? Carpe diem / YOLO.
On that note, tell other people to get you off of their imaginary timeline, too. When it comes, be ready, but don’t take me to freezing and falls before I get there. Yes, be ready for symptoms and one-sided compromises from Parkinson’s, but don’t assume they’re coming tomorrow. Life is better without walls.
Celebrate every success
In life, you will encounter people who are negative. People will tell you that it’s going to get rougher ahead and want to see you feel their pain. There will be people who try to make you feel bad if you’re doing things that they can’t do. That said, your job is to be your own Jimmy Choi. Do as much as you can. Tell the truth about your bad days. Nobody’s perfect, but life is what you make it. If you believe it, it’s better than if you don’t because the bad days are really bad. It’s much better to believe, even when all seems lost. I’ve been both and I’d rather focus on the positive people. They’re out there!
Oh, and don’t forget the massages. They’re not optional!
This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.