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 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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@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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@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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@macbeth Great message!

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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

Great song and wouldn’t that be nice -” if we all did as the words in the song” a great song- one of my favorite.

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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 and @macbeth I’m just sure that what the world needs is more singing. You have both lifted my spirits with these posts!

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Hi @knightkris and happy new year! I’ve been thinking about you. As I recall you posted at the end of the year that you would be doing some counseling with the PD Society of BC Canada. Has that been helpful to you? Let us know if you have been able to find a support group to help you through this time of loss. We care! Teresa

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@hopeful33250

Hi @knightkris and happy new year! I’ve been thinking about you. As I recall you posted at the end of the year that you would be doing some counseling with the PD Society of BC Canada. Has that been helpful to you? Let us know if you have been able to find a support group to help you through this time of loss. We care! Teresa

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Thank you for writing. I did have an appointment today with the Parkinson’s society but the counselor was sick. Si it is put off for a few weeks now. And thank you for mentioning my loss. I have been looking for an ongoing group for this. As wwll as a support group for my parkinson’s. I will write again when at my computer

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@hopeful33250

Hi @knightkris and happy new year! I’ve been thinking about you. As I recall you posted at the end of the year that you would be doing some counseling with the PD Society of BC Canada. Has that been helpful to you? Let us know if you have been able to find a support group to help you through this time of loss. We care! Teresa

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@knightkris Thanks for the update! Yes, keep in touch and let us know how you are doing.

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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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Hello @tntredhead I’ve been thinking about you and your husband. How are you both doing? When you have a moment, give us an update so we can keep in touch with you and your needs. Teresa

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@hopeful33250

Hi @knightkris and happy new year! I’ve been thinking about you. As I recall you posted at the end of the year that you would be doing some counseling with the PD Society of BC Canada. Has that been helpful to you? Let us know if you have been able to find a support group to help you through this time of loss. We care! Teresa

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I, too, send you kind thoughts regarding the loss of your mother. I invite you to join the Caregivers group on Connect. In particular, I think you might be interested in sharing in this discussion
– Loss and Grief in Caregiving http://mayocl.in/2hBpFNf

Furthermore, many hospices, including those in British Columbia, offer free support groups for grief and grief counseling. They are available even if you did not use the hospice service with your mom. You can find out more about grief counselling from Canadian Virtual Hospice http://www.virtualhospice.ca/ Let me know if I can help you find a local hospice. I used to work in this area.

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