What’s the best advice you’ve received about Parkinson’s?

[Community Member]

You don’t have to fight this alone, and asking for help isn’t losing independence, it’s protecting it.”

A physical therapist told me something similar early on: pace yourself before you’re forced to. It’s tempting to push through fatigue or skip rest days to prove you’re still “fine,” but Parkinson’s rewards consistency over intensity. Small, steady movement walking, stretching, even just standing up and sitting down a few extra times a day, does more good long-term than pushing hard on good days and crashing on bad ones.

The other piece that’s helped: symptoms and needs change, so it’s okay to keep adjusting the plan. What worked a year ago might not work now, and that’s not failure, that’s just Parkinson’s. Staying flexible with routines, medication timing, and support systems has made a bigger difference than trying to stick rigidly to what used to work.

On the “not alone” front, my family ended up bringing in a companion through Companions for Seniors when things got harder to manage on my own, and honestly, it took pressure off in ways I didn’t expect. Having someone there for company and to handle small daily tasks meant my energy could go toward the things that actually mattered, instead of being used up on logistics.

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[Community Member]

I love this advice, LAudd, thank you. I know my dad has struggled with this shift, too. And at first, he was slow to ask for help. But as time passes, it seems like he’s shifted to accept help and ask for it more.

And, yes, I think companionship can be so powerful. How else has your companion helped you?

• This reply was modified 1 month, 3 weeks ago by  Community Member.

[Community Member]

Don’t panic, you’re still alive and that’s what really matters

[Community Member]

That’s a great one! And I’m sure that it’s easy to fall into a panic. I know my dad has had phases where he’s worried a lot about the progression. It’s one reason why he doesn’t love to learn about potential symptoms and side effects — he just doesn’t want to know what’s coming.

[Community Member]

The best advice I have received is to exercise and walk regularly to stay in shape. I suffered a traumatic brain injury in 1992, when I was 20 years old. Since then my brain makes no dopamine. So I take 46 pills each day, at 8 exact times or else I turn into a chain saw.

Christina

• This reply was modified 1 month ago by  Community Member.