What to Expect When You're Newly Diagnosed With Parkinson's
Last updated: June 2022
The most frequent and empowering post in Parkinson's Bizarroworld is the question that asks, "Newly Diagnosed with Parkinson's: Now What?". After all, that's the question with the most significant answer we can offer.
What to expect with Parkinson's
Nobody here can tell you (honestly) how to escape Parkinson's. Posts may allude to real or illusory help and treatment in the future. But since we can't diagnose, we can only describe the road ahead. Hence, from our feet to our skull, Parkinson's will change us.
Thus, I decided to make a list of 21 things to expect from the first years of this diagnosis.
1. You have a name for your symptoms
You just won a name for your symptoms. That's 1 of 3 differences between yesterday and the avalanche that is today's diagnosis. There is no difference in your health other than what took you to the doctor in the first place.
Those new changes won't come overnight, and neither did those changes. Enjoy your life as well as you can. No timelines.
2. Parkinson's will make itself at home
The second is that you can expect that this condition is going to get more pronounced while it hangs out and makes itself at home. A lot of this is going to suck, but not all changes are guaranteed. That said, you should expect changes. That's life.
3. You'll need to talk about your Parkinson's with others
Your family and friends are going to have to know about this, too. You're going to have to be honest with them. Yes, their reaction might be bad, but real intimacy is based on more than 140 character expressions. It's OK to expect empathy from them.
4. Tomorrow is a new day
The sun is going to come up tomorrow, though you may not notice it because you've been hit by a wall of rock and ice. That's OK. We all grieve and cope differently. Ask Kubler-Ross and Kessler. They'll tell you it's true. Find a path and timeline that works for you.
5. Keep tabs on your mental health
Your mental health is everything. You're going to need to find ways to deal with the stress, strain, and permanence, as well as your feelings about it. Medicine and therapy aren't a sign of weakness. They're a tool to utilize. You can expect your doctor to recommend them.
6. Find a quiet space
You'll need to find a quiet place to go when your mood gets off - either in crying mode or angry mode. Fluctuating dopamine time isn't socializing time. Learn how to excuse yourself from social settings.
7. You're going to learn a lot about Parkinson's
You're going to learn a lot about this disease. Buckle up. Nevertheless, you're going to want to acclimate before you go in too deep of water or stay in too long.
Moderation. Don't go to the final stages when you're in slight tremors. The only thing you can expect there is pain you may never experience. Don't cross bridges until you have to or are ready to.
8. Get to know your doctors by name
You're going to have a set of doctors you know by name. You'll call them your doctor. Maybe you'll be besties. Maybe you won't. The important thing is you trust these people.
9. Getting used to a new normal might be tough
It's OK to not be OK enough to do all the things you did before. It's OK to talk to your friends and family about this.
10. Ask for help
You can ask your friends and family for help. You matter. You're not a burden.
11. You may feel fatigued with Parkinson's
You can expect Parkinson's to drain your energy. You may find that the "call of the nap" is one of the biggest issues with the early days of Parkinson's.
12. Find a way to stay active
You'll need to find your own path to stay active. You shouldn't expect that you'll run marathons, but you should try to be in motion, be it dancing, boxing, or walking in nature, it's all good.
13. Other people may not understand
You can expect people to not understand you or to be insensitive. Unfortunately, there's a hater there for everyone, no matter who they are. Meanwhile, you can educate the ones who want to change and ignore the rest. Remember, you matter.
14. Get ready for the symptoms
Parkinson's works in time with its "friends" to do damage. Your balance and walk can be affected, which leads to falls. Your swallowing can be affected, which leads to aspiration pneumonia. You can expect to learn about ways to work around this.
15. Parkinson's can affect your smile, voice, smell, and hearing
People with Parkinson's can expect bradykinesia to affect their smile. Parkinson's also does a number on pretty voices, smell, and hearing. Yep, Parkinson's is a jerk.
16. You're stronger than you know
You may find you're stronger than you ever expected that you can be.
17. There are resources out there to help you
As time goes on you will find that there are a lot of organizations (like this one) to help you.
18. Dreams become...interesting
You can expect your dream life to get a lot more interesting and dangerous.
19. You are not alone
In time, you will find that you're not alone. Your fellow people with Parkinson's include Ozzy Osbourne, Jesse Jackson, Janet Reno, and Pope John Paul 2. There's a lot of other people with Parkinson's out there, too. We're all working together as a community to educate, advocate, treat, and live life.
20. Think of this as a new beginning
You can expect that this is not the end, but instead, it's a new beginning. You'll find new friends, new hobbies, and new dreams. Even bad change can bring better tomorrows.
21. Getting Parkinson's is not your fault
You didn't do anything to get this disease. This isn't a karmic punishment, but you can learn from it. Expect the best, prepare for the best, and remember that you're still you. Parkinson's can't take that away from you.
I wish you well in your journey. Take care!
On average, how many times per month do you (or your caregiver) go to the pharmacy?
Join the conversation