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

Posted by @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?

REPLY

Hi @hopeful33250 @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth:

I’d like to invite you to the new group on Connect dedicated to discussions about Parkinson’s disease. It’s a space where we can ask questions, share tips and learn about living with Parkinson’s from each other. Whether you live with Parkinson’s or care for someone with Parkinson’s, please join us. Pull up a chair and tell us a bit about yourself.

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!

@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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My husband has only started with the incontinence issue and I am nearly at my wits end – both mentally and physically.  Im not sure if this is from the Parkinsons or the dementia but I am now wondering if I should have left him in the assisted living facility.  Not sure how long I can keep this up with about 2 hours sleep each night. Last night was the worse night so far so I am feeling a little sorry for myself this am I guess.The Redhead

@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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@tntredhead Incontinence is an issue that can be related to Parkinson’s and probably dementia as well. If you have not used the adult diapers, especially at night, that would be a great idea and it would give you a better night’s sleep. Some are made especially for nighttime use. You could also check with your husband’s doctor to see what other medical issue might be involved (perhaps a urinary tract infection) especially is this is a new problem. Keep us posted and let us know how he (and you) are doing.

@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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Hopeful33250. I do use the adult diapers and the pads under him but it just doesn’t seem o handle the problem. He was checked for the UTI and everything is fine. The doc tells me that the disease is just progressing very quickly right now and today/last night is just a very bad time.,  Thanks for your advice though.  I appreciate knowing someone understands.The Redhead

@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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@tntredhead I’m sorry to hear that there isn’t a simple answer to the problem. It is important for you to get your rest at night.

I’m not sure I belong in this group, but I have a friend with PD, and I do care.

My husband has Agent Orange related ischemic heart disease, and my gut feeling is that, that has been instrumental in his development of early onset dementia, which I feel is due to ischemic buildup in the small blood vessels to the brain. Although the government has not yet recognized this connection officially yet, one VA comp Doctor believes it will eventually be connected to AO, due to some similarities to PD, but not until after many more years of testing.

From reading what I have so far, my heart aches for people who have this disease. There is so much more to it than I had realized.

I can relate, just a bit, but only in a very limited way, because I have “Essential Tremors” – a genetic gift from my mother’s family. The shakiness drives me crazy some days, and, yes, you can see that others wonder what in the world your problem is. So, I can relate, even if only in a limited way. Feeling stressed only makes it worse. I’ve never understood why people are so judgmental about shakiness. My grandmother shook, my mother shook, I have cousins who shake, and, now, I shake, so I’ve been seeing it for years. It is such a ridiculous thing to be judgmental about.

I know that there is much more to PD than shakiness. As I said, it just allows me to relate a bit.

I will continue to follow this site, and I send my best wishes to all of you.

Macbeth

@macbeth

I’m not sure I belong in this group, but I have a friend with PD, and I do care.

My husband has Agent Orange related ischemic heart disease, and my gut feeling is that, that has been instrumental in his development of early onset dementia, which I feel is due to ischemic buildup in the small blood vessels to the brain. Although the government has not yet recognized this connection officially yet, one VA comp Doctor believes it will eventually be connected to AO, due to some similarities to PD, but not until after many more years of testing.

From reading what I have so far, my heart aches for people who have this disease. There is so much more to it than I had realized.

I can relate, just a bit, but only in a very limited way, because I have “Essential Tremors” – a genetic gift from my mother’s family. The shakiness drives me crazy some days, and, yes, you can see that others wonder what in the world your problem is. So, I can relate, even if only in a limited way. Feeling stressed only makes it worse. I’ve never understood why people are so judgmental about shakiness. My grandmother shook, my mother shook, I have cousins who shake, and, now, I shake, so I’ve been seeing it for years. It is such a ridiculous thing to be judgmental about.

I know that there is much more to PD than shakiness. As I said, it just allows me to relate a bit.

I will continue to follow this site, and I send my best wishes to all of you.

Macbeth

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Thanks @macbeth, I appreciate you sharing the story of your husband’s AO health issues. I wish there was a quicker way to address these health problems. I also appreciate your empathy for those of us with the “shakes.” Yes, it should not be something that we are judged on, but it seems that anything different is judged. That really is too bad.

@macbeth

I’m not sure I belong in this group, but I have a friend with PD, and I do care.

My husband has Agent Orange related ischemic heart disease, and my gut feeling is that, that has been instrumental in his development of early onset dementia, which I feel is due to ischemic buildup in the small blood vessels to the brain. Although the government has not yet recognized this connection officially yet, one VA comp Doctor believes it will eventually be connected to AO, due to some similarities to PD, but not until after many more years of testing.

From reading what I have so far, my heart aches for people who have this disease. There is so much more to it than I had realized.

I can relate, just a bit, but only in a very limited way, because I have “Essential Tremors” – a genetic gift from my mother’s family. The shakiness drives me crazy some days, and, yes, you can see that others wonder what in the world your problem is. So, I can relate, even if only in a limited way. Feeling stressed only makes it worse. I’ve never understood why people are so judgmental about shakiness. My grandmother shook, my mother shook, I have cousins who shake, and, now, I shake, so I’ve been seeing it for years. It is such a ridiculous thing to be judgmental about.

I know that there is much more to PD than shakiness. As I said, it just allows me to relate a bit.

I will continue to follow this site, and I send my best wishes to all of you.

Macbeth

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I also have Essential Tremor. I have been trying every med in the book and right now I am on Timolol (Pill form) and so far it is working. You might ask your Doc about it. I’ve tried other meds ending in “olol” and some of them worked for awhile.

@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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I am sure your husband dosn’t feel to good about the fact that he is having this issue. And he does know what is going on. I spent many years, i mean many years taking care of my mother. Who knew what was happening and others thinking she did know anything. We are always there.

But I am here to speak on the issue of Parkinson. I was diagnosed with PD last year and with Fibromalgia this year. I have a tremor in my right arm, have problems holding onto things. My doctor tells me I have early stages of the disease. I am an artist and writer. This is causing me a great deal of depression. I have other issues as well.

Others think that there is nothing wrong with me, that I am making all of this up. You don’t have Parkinson’s I is all in your head. Between these two diseases, it is hard for me to even hold down a job. I can’t even get disability. I feel very discriminated against

I am new to this. I am only 55 years old and it feels like I have been given a curse. I spent most of the last 15 years taking care of my mother. she passed away this pass January. And this is what happens. I now I shouldn’t feel I deserve something else.

I didn’t take care of my mother for applause. I did it because it was the right thing to do.And I would never trade what I did for anything in this world. It was the best gift I could of ever received from GOD,.I would do it again in a heart beat.

But to have be given these two diseases

Thank you

Kris Schmuland

@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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@knightkris Dear Kris: I am so sorry to hear of your recent diagnosis of PD. Most of us with PD have these same feelings when we are first diagnosed. We think that maybe it isn’t true, or maybe it will just go away. I don’t have tremors and many people just tell me that I should get another opinion because they are sure I don’t have PD (how frustrating!). However, you and your doctor are the best judges of your reality. I gather from your post that this is a new diagnosis for you, so I’m guessing that you have started meds for PD. Have they helped your symptoms? What about physical therapy for PD? Meds and the right physical therapy can make a world of difference. They help you to feel better and, more importantly, help you to begin to “take control” of the situation. Often times, chronic illnesses leave you feeling out-of-control. Also, see if there is a PD support group in your area where you can meet with others who have PD and share with them. It will also strengthen you for this journey. Please keep in touch with us and let us walk with you through this difficult time. Best wishes and blessings!

@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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Finding a support group is a great idea – and if you can’t find one, be a part of starting one, You don’t need a lot of people. Where I live, there are 6 of us who have PD and we got together and started one. We meet monthly and have outside speakers, or be our own speakers. We look up a topic and tell some of the things we found out about it – like PD and exercise, PD and dementia, PD and legal issues, PD and depression . . . and it’s been interesting. There is a national support group for Essential Tremor, too.

@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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@trouble4343 Thanks for your encouraging words. That is great that you started your own group. We are stronger together than when we are alone!

Liked by denie57

@trouble4343 Thanks for posting about your personal experience with tremors. Perhaps this will help @macbeth.

@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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Thank you for your reply.

I have a mild tremor in my right hand only I am taking meds. Levo Carb. It is helping out. It is a you stated, frustrating. The one thing that I did do at the start was to get a second opinion. didn’t believe it myself. I never thought about Physical therapy for PD. No one suggested this to me. I will have to have the doctor refer me to this. I will have to look for a support group. This has been suggested to me, but I never did anything about it. Now is the time to do this.

I haven’t reached out to anyone. As I am strong and can do everything myself NOT.

Thank you for getting back to me so quickly.

Kris

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