Mary Beth Skylis

Debbie, I can’t even imagine how much more difficult having Parkinson’s can be without receiving proper support and care. Do you have other people in your life who are supportive and able to offer a helping hand when you need it?

Sherman, that story breaks my heart. I wonder if part of the problem is that COVID was so politicized? Many people forget that those of us who are struggling with an illness or disease don’t get the privilege of being unconcerned.

Richard, that’s a really interesting perspective. As someone who doesn’t have Parkinson’s (my dad has it), I would see that kind of invitation as inclusive and encouraging. I’d never thought that it could be seen as an insult. I think, sometimes, I could benefit from my dad being candid with me. I hope your friend was able to see where you were…[Read more]

Christine, are you doing anything to try to fight the voice softness? I’ve heard of some people taking singing lessons or doing vocal training to maintain some vocal power. My dad struggles with this symptom, too. And I know he has to make a conscious effort to speak up, or we don’t always hear him.

Norm, I’d love to follow along with you on your journey. Are you feeling anything other than terror? I know my dad worried a lot — even for a few weeks after the surgery. But we’re all really grateful that he chose to get the surgery.

John, I’m so sorry that you’re experience that. I don’t have Parkinson’s but I have an autoimmune disease, and I’ve felt similar feelings before. It seems, to me, like people make assumptions about our abilities and performances, without having the full picture. Maybe it’d be helpful to educate your immediate friends and family about some of the…[Read more]

Nancy,

Thank you for your input. Yes, everyone is different. And I’m sure the surgery isn’t right for all people with Parkinson’s. I’m grateful that it turned out to be a positive procedure for my dad. He significantly decreased his Levodopa dosage afterwards.

I hope you’re doing well!

I’ve been watching the new Jimmy Chin show on Disney+. I think It’s called Edge of the Unknown. And it’s all about extreme adventurers. Pretty cool.

That’s a pretty odd thing for a surgeon to say!

When my dad was going through the procedure, they asked which symptoms he wanted to target the most. He was able to significantly change the severity of his dyskenesia. So, I know that it can definitely help with the physical symptoms. But I’m less familiar with the cognition — like you’ve so aptly pointed out.

Wow! That’s quite a bill.

My dad felt that way at one point too. But after his symptoms got bad enough, he decided it might not be such a bad idea. I know it’s not for everyone, but we’re really grateful that he got the procedure.