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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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 5 6:45am
In reply to @janetgeller9 "I live in NYC. My husband’s PCP is at Mt. Sinai hospital, one of the most..." + (show)
@janetgeller9

I live in NYC. My husband’s PCP is at Mt. Sinai hospital, one of the most prominent hospitals in NYC. They have a Movement Disorder clinic that offers compressive care for Parkinson’s patients. His PCP referred us there and I’m hoping she’ll be involved in some way. As I stated, our first appointment is in June so I’ll know more after that.

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I'm glad that you provided information about this program, @janetgeller9. I am looking forward to hearing more about this program. Please continue to share any questions or concerns you may have about PD.

REPLY
lkirley18 | @lkirley18 | 5 days ago
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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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

REPLY
2 replies
cartercd | @cartercd | 5 days ago
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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Leslie, welcome!

I am dealing with the same although I have fallen several times, but the physical therapist and my neurologist has told me both to slow down because I do walk fast so I don’t know what your pace of walk of walking is, but perhaps you might want to slow down, I don’t know what else to tell you sometimes if I’m really
tired and I’m walking, I can feel my left foot dragging and I seem to be weak on my left side
in terms, of the slowness I can’t help you there either some days. I’m good some days. I’m not so good.. I have had Parkinson’s since June 2022, so I am similar to you in terms of the longevity of having this.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 5 days ago

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.

REPLY
1 reply
deweeshart | @deweeshart | 4 days ago
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.

REPLY
54maerose73 | @54maerose73 | 4 days ago
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

REPLY
1 reply
pbarr | @pbarr | 4 days ago

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
dstrelinski | @dstrelinski | 4 days ago
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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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
dstrelinski | @dstrelinski | 4 days ago
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

REPLY
pbarr | @pbarr | 4 days ago
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

Jump to this post

Thank you and God bless!

REPLY
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