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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.

pbarr | @pbarr | Apr 6 10:07am
In reply to @hopeful33250 "@pbarr Hello Tom and welcome to Mayo Connect. I am sorry to hear of all of..." + (show)
@hopeful33250

@pbarr Hello Tom and welcome to Mayo Connect. I am sorry to hear of all of the health problems your wife has had. The PD diagnosis must be a difficult one for her in addition to the other health issues.

What symptoms led to her PD diagnosis? Is she having problems walking or does she have tremors? Has she begun any PD medications?

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Trouble walking and use of her hands

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pbarr | @pbarr | Apr 6 10:06am
In reply to @hopeful33250 "@pbarr Hello Tom and welcome to Mayo Connect. I am sorry to hear of all of..." + (show)
@hopeful33250

@pbarr Hello Tom and welcome to Mayo Connect. I am sorry to hear of all of the health problems your wife has had. The PD diagnosis must be a difficult one for her in addition to the other health issues.

What symptoms led to her PD diagnosis? Is she having problems walking or does she have tremors? Has she begun any PD medications?

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The meds she tried didn't help made her other conditions act up worse she thinks.

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1 reply
jtes | @jtes | Apr 6 6:39am
In reply to @pbarr "My name is Tom Barry Live in lincoln nebraska My wife was diagnosed with parkinsons about..." + (show)
@pbarr

My name is Tom Barry
Live in lincoln nebraska
My wife was diagnosed with parkinsons about 2 months ago she has already dealt with glomus tumors , gastroperesis, asthma, and diabetes. I know this sound out there but it's true. She went from 176 lbs down to 120 lbs and all the doctors that we have seen tell us I wish we could do something for you mrs Barry. And on top of all this because she can hardly eat her teeth are going bad ! I know this is hard to believe but it the truth. We have been married for 56 years this July. I don't know how she can keep going. I couldn’t. Sorry about all the texting just needed to vent. Everyone have a good evening!
Thomas Barry Jr
Lincoln Ne 68504

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My husband was diagnosed several years ago. Parkinsons of the Rockies has been very helpful to him with regular Parkinsons Boxing, stretching classes. There are people there in all stages of the disease and aside from the exercise they and their caregivers help and connect with each other. Nebraska also has an association, Parkinsonsnebraska.org. Check it out. I’m so sorry that your wife and you are going through this. Best of luck.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 5 9:09pm
In reply to @pbarr "My name is Tom Barry Live in lincoln nebraska My wife was diagnosed with parkinsons about..." + (show)
@pbarr

My name is Tom Barry
Live in lincoln nebraska
My wife was diagnosed with parkinsons about 2 months ago she has already dealt with glomus tumors , gastroperesis, asthma, and diabetes. I know this sound out there but it's true. She went from 176 lbs down to 120 lbs and all the doctors that we have seen tell us I wish we could do something for you mrs Barry. And on top of all this because she can hardly eat her teeth are going bad ! I know this is hard to believe but it the truth. We have been married for 56 years this July. I don't know how she can keep going. I couldn’t. Sorry about all the texting just needed to vent. Everyone have a good evening!
Thomas Barry Jr
Lincoln Ne 68504

Jump to this post

@pbarr Hello Tom and welcome to Mayo Connect. I am sorry to hear of all of the health problems your wife has had. The PD diagnosis must be a difficult one for her in addition to the other health issues.

What symptoms led to her PD diagnosis? Is she having problems walking or does she have tremors? Has she begun any PD medications?

REPLY
2 replies
pbarr | @pbarr | Apr 5 8:44pm
In reply to @dstrelinski "I will for sure put her in my prayers. I have had PD for 13 years...." + (show)
@dstrelinski

I will for sure put her in my prayers. I have had PD for 13 years. It has been a journey. My husband Kelly has been my strength and support

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Thank you and God bless!

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dstrelinski | @dstrelinski | Apr 5 7:57pm
In reply to @hopeful33250 "The Davis Phinney Foundation is offering a Live Well Today Webinar: "Emerging Therapies with Dr. Soania..." + (show)
@hopeful33250

The Davis Phinney Foundation is offering a Live Well Today Webinar: "Emerging Therapies with Dr. Soania Mathur and Dr. Michael Okun." The presenters will be an M.D. with young onset Parkinson's and a movement disorder specialist. If you are not able to attend on April 18, register anyway and a link to the recorded webinar will be sent to you.
Read more:
Dr. Mathur, a family physician living with young onset Parkinson’s, will interview Dr. Okun, a leading neurologist and movement disorder specialist from the University of Florida.

For the fourth consecutive year, Dr. Okun and Dr. Mathur will discuss emerging therapies and medications being studied in Parkinson's. This year, in addition to emerging therapies, Dr. Mathur and Dr. Okun will discuss the four treatments recently approved for treating Parkinson’s in the United States: Crexont, Vyalev, Onapgo, and Adaptive DBS.

Don't miss this opportunity to stay informed about the latest advancements in treatment.
Live Well Today Webinar:
“Emerging Therapies 2025 with Dr. Soania Mathur and Dr. Michael Okun"
Friday, April 18, 2025, at:

11 am MT/Denver
10 am PT/Los Angeles and Phoenix
12 pm CT/Chicago
1 pm ET /New York

REGISTER FOR WEBINAR
If you're unable to make it at the scheduled time, register anyway, and we'll send you a recording as soon as it is available.
If you run into any issues while registering, please email us at blog@dpf.org or call 866-358-0285.

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I am interested

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dstrelinski | @dstrelinski | Apr 5 7:49pm
In reply to @pbarr "My name is Tom Barry Live in lincoln nebraska My wife was diagnosed with parkinsons about..." + (show)
@pbarr

My name is Tom Barry
Live in lincoln nebraska
My wife was diagnosed with parkinsons about 2 months ago she has already dealt with glomus tumors , gastroperesis, asthma, and diabetes. I know this sound out there but it's true. She went from 176 lbs down to 120 lbs and all the doctors that we have seen tell us I wish we could do something for you mrs Barry. And on top of all this because she can hardly eat her teeth are going bad ! I know this is hard to believe but it the truth. We have been married for 56 years this July. I don't know how she can keep going. I couldn’t. Sorry about all the texting just needed to vent. Everyone have a good evening!
Thomas Barry Jr
Lincoln Ne 68504

Jump to this post

I will for sure put her in my prayers. I have had PD for 13 years. It has been a journey. My husband Kelly has been my strength and support

REPLY
1 reply
pbarr | @pbarr | Apr 5 6:14pm

My name is Tom Barry
Live in lincoln nebraska
My wife was diagnosed with parkinsons about 2 months ago she has already dealt with glomus tumors , gastroperesis, asthma, and diabetes. I know this sound out there but it's true. She went from 176 lbs down to 120 lbs and all the doctors that we have seen tell us I wish we could do something for you mrs Barry. And on top of all this because she can hardly eat her teeth are going bad ! I know this is hard to believe but it the truth. We have been married for 56 years this July. I don't know how she can keep going. I couldn’t. Sorry about all the texting just needed to vent. Everyone have a good evening!
Thomas Barry Jr
Lincoln Ne 68504

REPLY
4 replies
54maerose73 | @54maerose73 | Apr 5 3:32pm
In reply to @colleenyoung "Hi @hopeful33250 @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth: I'd like to..." + (show)
@colleenyoung

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.

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Hello. My name is Rose. I was diagnosed with Parkinson in 2018. I have had good and bad days. I would love to learn more about Parkinson and see how others are dealing with Parkinson Disease as well. Thank you. Rose

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1 reply
deweeshart | @deweeshart | Apr 5 9:19am
In reply to @lkirley18 "Hi I’m Leslie, I’ve had Parkinson’s for about 2 years. Not a severe case, mostly off..." + (show)
@lkirley18

Hi I’m Leslie,
I’ve had Parkinson’s for about 2 years. Not a severe case, mostly off balance issues and slowness issues. These have been very frustrating for me. I take carbidopa levadopa 3 times a day for it. Not dealing with the issues very well.
Thanks, Leslie

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I’m exactly like you! It’s depressing. I take two tablets three times a day. I am 79 years old.

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