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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.

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lind83 | @lind83 | Jun 15 2:38pm

Thank you for your encouraging words. I will definitely keep posting and will let you know how my visit goes. Thank you, Teresa! ❤️

REPLY
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spatase | @spatase | 2 days ago
In reply to @hopeful33250 "@spatase My only thought is to seek a second opinion. Is he currently seeing a movement..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

@spatase
My only thought is to seek a second opinion. Is he currently seeing a movement disorder specialist? This is a neurologist who is specially trained in movement disorders, such as Parkinson's disease.

What type of testing was done to determine the diagnosis of PD? Given the severity of his symptoms, have any other PD drugs been tried?

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@hopeful33250 He has seen two PD movement disorder specialists but they dismiss the autonomic symptoms and are happy they have addressed the minor tremors. He gets hot/cold waves that attack him hourly - he is either experiencing teeth chattering with nearly blue hands and cold body or he's sweating with a burning sensation on his face and sweating in the groin and his feet even sweat. It makes him unable to do anything because he's either undressing or adding clothes to try to find a middle ground of comfort. It is taking a toll on him emotionally and he says he doesn't know how much longer he can live like this.

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1 reply
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timber2026 | @timber2026 | 1 day ago
In reply to @spatase "@hopeful33250 He has seen two PD movement disorder specialists but they dismiss the autonomic symptoms and..." + (show)
Profile picture for spatase @spatase

@hopeful33250 He has seen two PD movement disorder specialists but they dismiss the autonomic symptoms and are happy they have addressed the minor tremors. He gets hot/cold waves that attack him hourly - he is either experiencing teeth chattering with nearly blue hands and cold body or he's sweating with a burning sensation on his face and sweating in the groin and his feet even sweat. It makes him unable to do anything because he's either undressing or adding clothes to try to find a middle ground of comfort. It is taking a toll on him emotionally and he says he doesn't know how much longer he can live like this.

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@spatase Just out of curiosity, is your husband on a medication for PD? My husband experienced the hot/cold while on Seroquel. So many changes. I'm with you!

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1 reply
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spatase | @spatase | 23 hours ago

My husband is on Sinemet 25/100 4X day. He previously was on Crexont but he also has sinus bradycardia so the Instant Release C/L seems better for him.

REPLY
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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 6 hours ago
In reply to @timber2026 "@spatase Just out of curiosity, is your husband on a medication for PD? My husband experienced..." + (show)
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@spatase Just out of curiosity, is your husband on a medication for PD? My husband experienced the hot/cold while on Seroquel. So many changes. I'm with you!

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Hello @timber2026
I see that this is your first post in the Parkinson's support group. I understand that your husband has PD. How long ago was he diagnosed? How are you both doing?

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