Living with Parkinson's Disease - Meet others & come say hi

Posted by Colleen Young @colleenyoung, Dec 8, 2016

Welcome to the Parkinson’s Disease group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with Parkinson’s or caring for someone with Parkinson’s. Let’s learn from each other and share stories about living well with Parkinson’s, coping with the bumps and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself?

Thank you Colleen for your reply

It is the first anniversary of my mother’s passing which makes it very difficult for me. Not even being able to give my mother a memorial service. Adding this to the list of everything else that is going on is making for a very depressing time for me.

I have been in contact with the BC Bereavement society and they have given me a list of groups in the area. Not many within my area. I have contacted the White Rock Hospice society and they have nothing happening at this moment. They are trying to get a monthly group going, but this will take time.

As mentioned I did have an appointment with the Parkinson’s society for counseling, the counselor was ill so it has been postponed for a few weeks. But I will be on the phone with them on Monday to find a support group around my area

It seems I have so much going on that I am being bombarded with problems. I just wish that it was just one problem,not many.

Thank you Colleen

Kris Schmuland

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@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I’m excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson’s. As we know, all of us are stronger together!

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@ggopher Hi Steve: It’s been awhile since we have heard from you. How are you doing? Is the Sinemet with the carbonated beverage still working well for you? Have you started any new exercise programs? Check in with us when you have time and let us know how you are doing. Teresa

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@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I’m excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson’s. As we know, all of us are stronger together!

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Ho @hopefol. I do use the brief for my hubby as well as the urinal at night. Doc says his kidney and all is good. Right now he is back in assisted living as I have been in the hospital since Saturday. Kidney infection that went into sepsis. Improving and hope to go home tomorrow. Doc says I need a week or so to heal and get my energy back before I bring him home. Hope things are going well for youn

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@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I’m excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson’s. As we know, all of us are stronger together!

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Thanks for checking in with us, @tntredhead. I am sorry to hear that you have been sick, sepsis is a serious matter. I hope that you will have some help when your husband returns home. I am doing well, thanks for asking. Please take care and be well. I’m copying the other members of our group so that they can see your update and wish you well. @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @aperob @caryp43 @burgle @macbeth @knightkris @IndianaScott Teresa

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@tntredhead
Yes! Please rest, and feel better soon!

Macbeth

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@macbeth, Thanks for your encouraging words to @tntreadhead! We all need encouraging, espcially when we have been ill.
@chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @aperob @caryp43 @burgle @knightkris @IndianaScott

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@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I’m excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson’s. As we know, all of us are stronger together!

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Teresa, I’m interested in Parkinson’s because that was the long-term diagnosis for my brother, who died a month ago. I must emphasize, however, that in his final days, neurology serious questioned whether he had Parkinson’s or a similar, more widely damaging multi-system degeneration. As my sister-in-law shares information on this with me, I’ll pass it along.
Martin

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@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I’m excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson’s. As we know, all of us are stronger together!

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@predictable Thanks, Martin. Sounds good. Teresa

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@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I’m excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson’s. As we know, all of us are stronger together!

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@predictable. I’m sorry to hear of your brother’s death, Martin. Yes, there are a lot of Parkinson’s disorders that are not the same as “typical” Parkinson’s disease, (we don’t all look and act like Michael Fox, etc.). and many are difficult to diagnose. My neurologist told me that when doctors suspect Parkinson’s they try a Parkinson’s med and if that decreases symptoms, they make a Parkinson’s diagnosis. It could be that your brother had PD with some other degenerative disease as well. We look forward to learning more of your brother’s story with a Parkinson’s-like disorder, as you feel comfortable sharing it with us. My sympathies to you and your sister-in-law as you grieve this loss. Teresa

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Just wanted to say “Hi”. this month marks 20 yrs since my first symptom of PD… February 1997. Generally speaking, until last April (2016) my PD has been a problem but not what I would call a disability. but starting last April I have had an accelerated progression…freezing (if the doorbell or phone rings, I’m stuck to the floor) and near falls (have only hit the floor twice luckily). My medication drops off very quickly now and I have to plan trips to the gym or grocery store around my “window of opportunity” as I call it. Well, that’s all for now. 🙂

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@david59

Just wanted to say “Hi”. this month marks 20 yrs since my first symptom of PD… February 1997. Generally speaking, until last April (2016) my PD has been a problem but not what I would call a disability. but starting last April I have had an accelerated progression…freezing (if the doorbell or phone rings, I’m stuck to the floor) and near falls (have only hit the floor twice luckily). My medication drops off very quickly now and I have to plan trips to the gym or grocery store around my “window of opportunity” as I call it. Well, that’s all for now. 🙂

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Welcome David. I’m glad you took your 20 year anniversary as an occasion to share your PD experience with the group. I’m sorry to hear about the accelerated progression however. Have you made any changes in your home to help remove obstacles or reduce the harm that may come from falling?

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@david59

Just wanted to say “Hi”. this month marks 20 yrs since my first symptom of PD… February 1997. Generally speaking, until last April (2016) my PD has been a problem but not what I would call a disability. but starting last April I have had an accelerated progression…freezing (if the doorbell or phone rings, I’m stuck to the floor) and near falls (have only hit the floor twice luckily). My medication drops off very quickly now and I have to plan trips to the gym or grocery store around my “window of opportunity” as I call it. Well, that’s all for now. 🙂

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Hello @david59. Thanks for your post. It is good to have you as part of our group. I’m sorry to hear of the sudden change in your symptoms. This must be very difficult for you. What does your doctor say about this change in your condition? Will new meds be tried? It sounds as if you are dealing with this change as best as you can. Please meet some of the other members of our group, @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle @macbeth @knightkris. These folks have proven to make the most of their life with PD and I think you will enjoy getting to know them. They may be able to offer you some perspective on how to handle these sudden changes. Keep in touch with us, we look forward to getting to know you and supporting you through these changes. Teresa

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