[Mary Beth Skylis]

Gail, thank you so much for your thoughtful feedback. And for your contributions to science. As the daughter of a man who has PD, I’m very grateful for the people who came before him.

I’m curious, did you see any long-term effects from any of your trials? It sounds like they could’ve been testing for things like neuroplasticity with the memorization of strange numbers and things like that. Do you feel like you remember things more easily? Have you made any discoveries through the course of these trials?

[Mary Beth Skylis]

Jorge,

Thank you for your thoughts. Yeah I think my Dad’s biggest concern is that he doesn’t want to have to rely on anyone else to drive him to and from his appointments. But he likes the idea of letting people learn from his disease. And he’s very optimistic that researches will find ways to assist current and future PD patients. Have you seen the results of any of these trials yet?

[Mary Beth Skylis]

I’m so happy to hear that so many people are reaping the benefits of RSB. And for those who don’t have a local gym, there definitely are online resources and different kinds of fitness classes that are designed specifically for Parkinsons. I think I’ve heard of a woman in NYC who has a series of online and in person dance classes. But it could be worth asking a local gym if they’d be open to building a PD program as well. Or maybe even your local yoga studio. If there’s enough interest, I think that gyms will adapt.

The RSB that my Dad goes to is quite new, and interest has exploded since it opened. I think you’re exactly right — boxing shows PD (or whatever else you’re struggling with) that you WILL fight back. And on top of that, you have a community of people that really understands. My Dad doesn’t talk alot, but I think he likes to listen. And listening to people he can identify with helps (or at least this is my theory).

[Mary Beth Skylis]

Hey Corrie,

Thank you for your thoughtful comments. First of all, I’m really sorry that you’re going through this. As the daughter of a man with Parkinson’s, I can certainly relate to the rollercoaster. My Dad is a little fighter, and he gives PD his all on a regular basis. But it hurts to see how much the disease takes from such a kind man. He, too, has seen a bit of a decline in speech but he has always been quiet. I think the hardest part of being a caregiver is figuring out how to take care of yourself while someone you love is suffering. I want to be available to my Dad, to make sure he doesn’t have to face such an awful illness alone. But it does get to me. I’m a columnist here, for Parkinsons News Today. And I often find myself not wanting to write about his struggle because talking about the disease dredges up lots of feelings. My superhero Dad is sick. And PD takes more than its share on a daily basis. Writing about it on a regular basis is a constant reminder that he’s struggling. But at the end of it all, I think that talking about it reminds us that we’re not alone. And I try to remind myself that we’re no good to anyone if we don’t take care of ourselves.

 

[Mary Beth Skylis]

Hey Scott,

I can imagine that the diagnosis was tough to hear. But it sounds like you have a supportive community. Do you think your work environment will stay the same for the time being?

[Mary Beth Skylis]

Hey Andrew,

Thanks for your response. I’m a new moderator and I still get a little confused by our design too. Thanks for hanging in there. Yeah strengthening muscles seems like a good idea but I could see the allure of a brace as well. My Dad tries to take an active approach as well. He boxes a couple times a week, and the fitness seems to help.

[Mary Beth Skylis]

Maria,

Have you discovered any strategies that reduce insomnia?

[Mary Beth Skylis]

Hey Laura,

I’m a forum moderator here. My Dad was diagnosed with PD in 2013. I’m curious about how DBS did or didn’t impact the timing of your drugs? My Dad just underwent DBS a few months ago.