1. < Parkinson's Disease
Moderator

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

Posted by Colleen Young, Connect Director @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.

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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 30, 2016
In reply to @elizabethbryant "@johnjames Yes John, it could be me speaking your same words with my Dysplasia, I believe..." + (show)
@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

@macbeth Great message!

REPLY
johnjames | @johnjames | Dec 30, 2016
In reply to @elizabethbryant "@johnjames Yes John, it could be me speaking your same words with my Dysplasia, I believe..." + (show)
@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.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 31, 2016
In reply to @elizabethbryant "@johnjames Yes John, it could be me speaking your same words with my Dysplasia, I believe..." + (show)
@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 and @macbeth I'm just sure that what the world needs is more singing. You have both lifted my spirits with these posts!

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 20, 2017

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

REPLY
3 replies
knightkris | @knightkris | Jan 20, 2017
In reply to @hopeful33250 "Hi @knightkris and happy new year! I've been thinking about you. As I recall you posted..." + (show)
@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

Jump to this post

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

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 20, 2017
In reply to @hopeful33250 "Hi @knightkris and happy new year! I've been thinking about you. As I recall you posted..." + (show)
@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

Jump to this post

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

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 20, 2017
In reply to @hopeful33250 "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..." + (show)
@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!

Jump to this post

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

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 20, 2017
In reply to @hopeful33250 "Hi @knightkris and happy new year! I've been thinking about you. As I recall you posted..." + (show)
@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

Jump to this post

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.

REPLY
knightkris | @knightkris | Jan 22, 2017

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

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 30, 2017
In reply to @hopeful33250 "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..." + (show)
@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!

Jump to this post

@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

REPLY
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