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

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.

Chances are you'll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group.

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?

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

@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 Thank you for sharing your story (and your mom’s story) of loss with @johnjames and with the rest of us at Mayo Connect. Loss is a real part of disabling diseases. We not only lose our physical abilities and our strength but we can also lose the company of our friends and family. I suppose that is why I’m such a strong proponent of support groups. Support groups help us to adjust to a “new normal” and give us “living examples” of people who have walked the pathway that we are walking. I know it is very difficult for some people to make that step to attending a support group, some people are “private” but just attending, even if you don’t share or say anything, provides a great place of solace and support. It also teaches us that we are not really alone nor do we have to be lonely. There are others who are willing to carry our burdens with us. Best wishes as you walk this journey of loss. I would encourage you to find a grief support group in your area. You are dealing with many losses right now and the loss of your mom is big one. Best wishes and keep in touch with us. We are “all ears.”

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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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Hi @johnjames. I’m assuming that “Desert Ridge” area is in Arizona? If you could provide a large city, that might be helpful for my research. Thanks!

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@johnjames Yes John, it could be me speaking your same words with my Dysplasia, I believe that their
lives have to go on. The isolation is bad for us. I wrote a dear friend this morning of your same thoughts
and everyone seems to run to you as they did this past April upon diagnosis and stay for a time and then
leave. This website is excellent but doesn’t replace friends and family. I do know isolation is the worse
thing, there is a world of people just like us out there that are having the same feelings and those feelings
are very real.

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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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Thank you for your insight. This coming month I will be attending my first couselling session at the PD Society of BC Canada. From there and maybe before I will search for a support group in my area. I have attended grief couselling for 6 months, plus other couselling ( couldn’t afford to continue) so I wait.

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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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@knightkris Thanks for letting us know, we will continue to care about you. Keep in touch!

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@elizabethbryant

@johnjames Yes John, it could be me speaking your same words with my Dysplasia, I believe that their
lives have to go on. The isolation is bad for us. I wrote a dear friend this morning of your same thoughts
and everyone seems to run to you as they did this past April upon diagnosis and stay for a time and then
leave. This website is excellent but doesn’t replace friends and family. I do know isolation is the worse
thing, there is a world of people just like us out there that are having the same feelings and those feelings
are very real.

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Thanks for your kind reply @elizabethbryant. I wish you the best in 2017.

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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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@johnjames Hi JJames: I did a little research for PD support groups in the Phoenix area and came across the website for the Barrow Neurological Institute (the Mohammed Ali Parkinson’s Center). The website lists several support groups, many of which are afternoon/evening meetings, including locations in Mesa, Phoenix, Sun City, etc. Here is the website. https://www.barrowneuro.org/patients-families/find-a-support-group/
Keep in touch and let us know how you are doing. Best wishes for 2017!

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@elizabethbryant

@johnjames Yes John, it could be me speaking your same words with my Dysplasia, I believe that their
lives have to go on. The isolation is bad for us. I wrote a dear friend this morning of your same thoughts
and everyone seems to run to you as they did this past April upon diagnosis and stay for a time and then
leave. This website is excellent but doesn’t replace friends and family. I do know isolation is the worse
thing, there is a world of people just like us out there that are having the same feelings and those feelings
are very real.

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Yes-your so right on- not sure why, so many-make it so hard and confusing to understand? it’s like if they get to lone, for to long-they too make catch it or some thought like that. Most just avoid me or talk over me about something- I have no idea what their talking about.We have to pick each other up and support each other to keep going, as God says- Help your brother or Sister) with their burdens and help carry them. JJAMes

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@elizabethbryant

@johnjames Yes John, it could be me speaking your same words with my Dysplasia, I believe that their
lives have to go on. The isolation is bad for us. I wrote a dear friend this morning of your same thoughts
and everyone seems to run to you as they did this past April upon diagnosis and stay for a time and then
leave. This website is excellent but doesn’t replace friends and family. I do know isolation is the worse
thing, there is a world of people just like us out there that are having the same feelings and those feelings
are very real.

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@johnjames That sounds like a good sermon! Thanks for the inspiration – The Good Samaritan in modern times!

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@elizabethbryant

@johnjames Yes John, it could be me speaking your same words with my Dysplasia, I believe that their
lives have to go on. The isolation is bad for us. I wrote a dear friend this morning of your same thoughts
and everyone seems to run to you as they did this past April upon diagnosis and stay for a time and then
leave. This website is excellent but doesn’t replace friends and family. I do know isolation is the worse
thing, there is a world of people just like us out there that are having the same feelings and those feelings
are very real.

Jump to this post

@johnjames

I hope this isn’t totally inappropriate, but your post reminded me of an old, favorite song:

Love is but a song to sing
Fear’s the way we die
You can make the mountains ring
Or make the angels cry
Though the bird is on the wing
And you may not know why
Come on people now
Smile on your brother
Everybody get together
Try to love one another
Right now
Some may come and some may go
We shall surely pass
When the one that left us here
Returns for us at last
We are but a moment’s sunlight
Fading in the grass
Come on people now
Smile on your brother
Everybody get together
Try to love one another
Right now
Come on people now
Smile on your brother
Everybody get together
Try to love one another
Right now
Come on people now
Smile on your brother
Everybody get together
Try to love one another
Right now
If you hear the song I sing
You will understand (listen!)
You hold the key to love and fear
All in your trembling hand
Just one key unlocks them both
It’s there at your command
Come on people now
Smile on your brother
Everybody get together
Try to love one another
Right now
Come on people now
Smile on your brother
Everybody get together
Try to love one another
Right now
Come on people now
Smile on your brother
Everybody get together
Try to love one another
Right now
Right now
Right now

It also reminds me of “Lean On Me” by Bill Withers”, another favorite.

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