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.

Moderator
Lisa Lucier, Moderator | @lisalucier | Apr 24 11:29am
In reply to @lauriesgmk "Hello Colleen: My husband was recently diagnosed with early stage Parkinson's. He is 78, in great..." + (show)
@lauriesgmk

Hello Colleen: My husband was recently diagnosed with early stage Parkinson's. He is 78, in great shape, healthy for the most part, and very active. His symptoms are few, but disconcerting non-the-less. Stiffness upon rising after sitting, slight imbalance when walking, etc. We are looking for a protocol/blueprint to combat the progression of the disease, and to work positively with this devastating news. He's enrolled in PT twice per week to build muscle, resistance and balance. He's staying positive and active as well. Any help you can give me would be greatly appreciated. Regards, Laurie Mandy Karopczyc, or just Laurie!

Jump to this post

Hi, @lauriesgmk - I wanted to add my welcome to Mayo Clinic Connect. That is significant, life-changing news to receive a diagnosis like your husband's of Parkinson's. The physical therapy he is doing sounds great. Your desire to learn more to combat the progression of the disease is admirable.

How is he doing today?

REPLY
gumbo | @gumbo | Apr 24 10:22am

does stem cell treatment help in early PD

REPLY
gumbo | @gumbo | Apr 24 10:20am
In reply to @lauriesgmk "Hello Colleen: My husband was recently diagnosed with early stage Parkinson's. He is 78, in great..." + (show)
@lauriesgmk

Hello Colleen: My husband was recently diagnosed with early stage Parkinson's. He is 78, in great shape, healthy for the most part, and very active. His symptoms are few, but disconcerting non-the-less. Stiffness upon rising after sitting, slight imbalance when walking, etc. We are looking for a protocol/blueprint to combat the progression of the disease, and to work positively with this devastating news. He's enrolled in PT twice per week to build muscle, resistance and balance. He's staying positive and active as well. Any help you can give me would be greatly appreciated. Regards, Laurie Mandy Karopczyc, or just Laurie!

Jump to this post

DR. told me exercise daily
really helps

REPLY
lauriesgmk | @lauriesgmk | Apr 21 11:19am

Hello Colleen: My husband was recently diagnosed with early stage Parkinson's. He is 78, in great shape, healthy for the most part, and very active. His symptoms are few, but disconcerting non-the-less. Stiffness upon rising after sitting, slight imbalance when walking, etc. We are looking for a protocol/blueprint to combat the progression of the disease, and to work positively with this devastating news. He's enrolled in PT twice per week to build muscle, resistance and balance. He's staying positive and active as well. Any help you can give me would be greatly appreciated. Regards, Laurie Mandy Karopczyc, or just Laurie!

REPLY
2 replies
windyh | @windyh | Apr 18 8:45am
In reply to @tntredhead "My husband has only started with the incontinence issue and I am nearly at my wits..." + (show)
@tntredhead

My husband has only started with the incontinence issue and I am nearly at my wits end - both mentally and physically.  Im not sure if this is from the Parkinsons or the dementia but I am now wondering if I should have left him in the assisted living facility.  Not sure how long I can keep this up with about 2 hours sleep each night. Last night was the worse night so far so I am feeling a little sorry for myself this am I guess.The Redhead

Jump to this post

I can't think of anything more exhausting than being a caregiver! Keep in mind that you must also take care ofyourself, & sometimes, that requires hard decisions. Contact you local Senior Services - they may offer some help.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 6 7:55pm
In reply to @pbarr "After about 2 .months finally talked her in to ding therapy. Started about 2 was ago...." + (show)
@pbarr

After about 2 .months finally talked her in to ding therapy. Started about 2 was ago. She is talking about trying some patches costly but if it helps cost would not be a factor. Wondered if you have heard of anyone using a patch for pd?

Jump to this post

@pbarr

We have had several members talk about using the patch. Here is a link where you can see the discussions on this topic,
https://connect.mayoclinic.org/group/parkinsons-disease/?search=patch#discussion-listview
You mentioned in your post, "ding therapy." I'm not sure I understand what that is. Could you describe it for me?

REPLY
sillyblone | @sillyblone | Apr 6 2:58pm
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

Hello Tom,
Welcome to the group.
Sillyblone

REPLY
sillyblone | @sillyblone | Apr 6 2:56pm
In reply to @54maerose73 "Hello. My name is Rose. I was diagnosed with Parkinson in 2018. I have had good..." + (show)
@54maerose73

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

Jump to this post

Hello Rose
Hope you feel comfortable on this site.
Everyone I have been sharing with are very caring individuals. If you are not sure about something .. just ask.
Sillyblone

REPLY
pbarr | @pbarr | Apr 6 2:04pm
In reply to @hopeful33250 "@pbarrier1 I'm wondering if she has tried other meds to help with Parkinson's. Have you contacted..." + (show)
@hopeful33250

@pbarrier1

I'm wondering if she has tried other meds to help with Parkinson's. Have you contacted her doctor to see if another medication might be tried?

If her worst symptoms are walking and use of her hands. She might be helped by working with a physical therapist (for the walking problem) and an occupational therapist who can help with the use of the hands.

Would she be willing to see a physical therapist?

Jump to this post

After about 2 .months finally talked her in to ding therapy. Started about 2 was ago. She is talking about trying some patches costly but if it helps cost would not be a factor. Wondered if you have heard of anyone using a patch for pd?

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 6 11:28am
In reply to @pbarr "The meds she tried didn't help made her other conditions act up worse she thinks." + (show)
@pbarr

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

Jump to this post

@pbarrier1

I'm wondering if she has tried other meds to help with Parkinson's. Have you contacted her doctor to see if another medication might be tried?

If her worst symptoms are walking and use of her hands. She might be helped by working with a physical therapist (for the walking problem) and an occupational therapist who can help with the use of the hands.

Would she be willing to see a physical therapist?

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.