Mary Beth Skylis
Forum Replies Created
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Hi Eva-h-Wharton,
Thanks for this topic. What an intimidating discussion. My dad hasn’t quite reached this point, but he does sometimes struggle to keep weight on. What does your husband think about the idea?
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Mary Beth Skylis
ModeratorNovember 7, 2023 at 7:21 pm in reply to: What are you putting on your Christmas list this year?Ooh good question! My dad LOVES Kizik shoes. I’ll probably get him a pair of those.
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Mary Beth Skylis
ModeratorNovember 7, 2023 at 7:20 pm in reply to: Which company makes custom boxing shorts?Good question! I’m not sure myself, but I bet somebody makes them.
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Mary Beth Skylis
ModeratorNovember 7, 2023 at 7:20 pm in reply to: Which company makes custom boxing shorts?Good question! I’m not sure myself, but I bet somebody makes them.
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Mary Beth Skylis
ModeratorNovember 7, 2023 at 7:20 pm in reply to: Which company makes custom boxing shorts?Good question! I’m not sure myself, but I bet somebody makes them.
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I can’t speak to REM sleep behavior disorder but I have PTSD and I take clonazepam on occasion to help with sleep disturbances. It does knock me out and make me feel rested. Trazadone also helps but it tends to leave me groggy all morning.
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Mary Beth Skylis
ModeratorJanuary 3, 2024 at 11:03 am in reply to: How has Parkinson’s changed the holidays for you?Lori, I know this feeling. I’m sorry that you know it, too. Have you found that your Parkinson’s community helps to cure the loneliness at all?
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Mary Beth Skylis
ModeratorJanuary 3, 2024 at 11:02 am in reply to: How has Parkinson’s changed the holidays for you?I’m so sorry that this is a reality. I know my dad relates to this description of Parkinson’s around the holidays. Do you find that you’re still willing to participate in social gatherings? Or do you prefer a more contained environment?
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I recently learned that some programs extract stem cells from the placenta after a mother gives birth. I know not every program works that way, but do you think you would be more inclined to embrace it if you knew how the cells were sourced?
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Mary Beth Skylis
ModeratorDecember 12, 2023 at 4:47 pm in reply to: Do you still have your driver’s license?Nsurit, my parents started out in rural Michigan. But now they’re in a small downtown area, which I think is helpful for my dad (PwP). He still avoids driving for any extended period of time, but I see how proximity matters.
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Mary Beth Skylis
ModeratorDecember 12, 2023 at 4:46 pm in reply to: Do you still have your driver’s license?Hi Bert-Shure, do you find that the autopilot feature helps a lot? I hadn’t thought about that being a potential bonus.
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I don’t have PD, but I’ve taken it before. I find that a small dosage does knock me out when I need it. But I really don’t like the idea of using a benzodiazepine, personally. I’ve read that they’re highly addictive, and long-term use can lead to a cognitive decline. Too spooky for me!
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What kind of fiction? Are you reading anything right now?
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Mary Beth Skylis
ModeratorNovember 21, 2023 at 4:10 pm in reply to: What has been your greatest challenge as a caregiver?Hi MimiRiaMaria,
I’m so sorry that things are so tough. Parkinson’s is really hard to face. It sounds like you have a tremendous amount of work on your plate, and you’re watching your husband lose abilities at the same time.
I know it seems impractical to add anything else to the mix, but I’m wondering if you could establish a Parkinson’s group closer to home? Or find some services that could pitch in? I know some people have meals sent to them, or a helper come in to address things like baths. Just wondering if it’s a possibility.
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Mary Beth Skylis
ModeratorNovember 20, 2023 at 9:17 am in reply to: What are you putting on your Christmas list this year?I love Harry Potter 🙂 Is that a tradition, or something you’re just looking to do this year?
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Mary Beth Skylis
ModeratorOctober 24, 2023 at 1:49 pm in reply to: What kind of footwear do you prefer?Do you find that they do well on long days where you’re standing a lot?
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Mary Beth Skylis
ModeratorOctober 24, 2023 at 1:47 pm in reply to: Do you struggle to stay hydrated? Is there anything you do to remind yourself to drink water?I love a good straw, myself. Do you use one of those steel straws? Or do you keep a different kind around?
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Mary Beth Skylis
ModeratorAugust 15, 2023 at 2:21 pm in reply to: Have you lost anyone to Parkinson’s disease?Wow, Jeffery, that sounds like a really hard thing to witness. And experience. What other lessons do you think your dad taught you?
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Mary Beth Skylis
ModeratorAugust 15, 2023 at 2:20 pm in reply to: Have you lost anyone to Parkinson’s disease?Sherman, this is an interesting topic to me. While it’s really hard to have to navigate Parkinsons or see someone you love navigating it, I do think that it’s made us more intentional about our time together. I don’t know how long I’ll have my dad, so I try to maximize both our time and the quality of it.
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Mary Beth Skylis
ModeratorAugust 15, 2023 at 2:19 pm in reply to: Have you lost anyone to Parkinson’s disease?I’m so sorry for your loss, Donna. And for your diagnosis. What a terrible  combination of losses. How did you figure out that you have PD?
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Mary Beth Skylis
ModeratorAugust 15, 2023 at 2:17 pm in reply to: Have you lost anyone to Parkinson’s disease?Barbara, I’m so sorry for your loss. It’s such an untouchable grief. And to me, it always feels incurable. But what a wonderful thing it is to love someone so much. Do you have a good support network for yourself these days?
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Mary Beth Skylis
ModeratorAugust 2, 2023 at 12:45 pm in reply to: Have you been able to develop a Parkinson’s community for yourself? If so, how?Mike, it sounds like you’re doing a good job of surrounding yourself with supportive people. But I’m sorry for your struggles. Good to hear from you!!
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Mary Beth Skylis
ModeratorJuly 5, 2023 at 10:34 am in reply to: How do you cope with the reality of having Parkinson’s? Does it comfort you to share details about your life and how the disease impacts you?Doug, I’m really sorry that sharing hasn’t been helpful for you and your wife. I wonder if my dad feels similarly. Have you been able to find a Parkinson-specific community like his one that helps? I know some community members participate in video chats, which seems to help.
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Mary Beth Skylis
ModeratorJune 9, 2023 at 11:39 am in reply to: Did you choose to retire after receiving your Parkinson’s diagnosis?I’m sorry you’re not feeling well, Troy. Hopefully the bad days don’t last too long. Do you take Levodopa to help manage the dips?