For those who care for someone with Parkinson's disease
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Some of you may know that I am working on a book and a program for helping caregivers. And I realized that there is something I don't know. Few people here describe getting help or support from other members of their church/temple/sangha/mosque or other religious communities. Maybe that means that those folks get so much help that they don't need to come to this group? Still, I want to ask: Have you gotten help from your religious/spiritual community? Did you have to ask? How did they help? Would you welcome help from your religious community? Thanks. Full disclosure I'll apply what I learn here (anonymously, or course) to my suggestions about ways PD Caregivers can find support in their communities. JIM, please delete if this violates rules? |
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| For us the answer is no. There was a Parkinson's group that was meeting at a church Fellowship Hall, but they haven't met in over a year due to COVID |
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My husband died almost 3 years ago. When our Pastor was able, he helped my husband by taking him to a doctor's appointment in a city about a 1 1/2 hours distance. We were involved in our Protestant church all our lives. My husband held different positions during his life when he was well. After he was diagnosed with Parkinson's he continued to attend church, but it got so he couldn't make it up the stairs and eventually couldn't attend and then went to Long Term. But the members were always supportive except they didn't visit him in Long Term. Our pastor died before my husband went to Long Term, however the Long Term Pastor visited him. My husband lost the ability to make conversation so difficult for people to visit. His voice became very low and he slept a lot so it made it hard for people to visit. Parkinson's takes so much from a person's life. I got a lot of support from this forum when I was a caregiver. I was thankful for the support. |
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Dear VioletV- I have been thinking about your question. Some of us do not have a religious community for support. Your book would be a tool for use independently or as a supplement to a support system I hope you write it. NoMatterWhat |
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Hi NoMatterWhat, Thanks. I've already written it. The book is in the editorial/production process. I expect to be able to have it on the market in June. In the mean time I've created a 21 day email support program for caregivers. My first buyers. have found it helpful. Don't know if I can write more than this about it here. |
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| How's your book coming VioletV? |
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Thanks for asking - the book is moving along. I just got the MS back from the copy editor today with what he described as "final things." I'm kind of surprised, still, at how much has to be done between having the idea, writing the first, second, third, fourth, and fifth drafts, finding a copy editor, going through edits ... and still to be done all the final line edits, book layout and design, cover design, proofs and production... still, I hope it ends up doing what I wanted - which is to share my experiences and insights with caregivers to ease their loneliness and make life easier. |
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| Writing a book seems like a long process. But I'm glad you're doing it. Keep us informed |