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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.

ecarvalho | @ecarvalho | Jun 20 3:02pm

I want to join a support group about Parkinson's....

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3 replies
sillyblone | @sillyblone | Jun 19 9:38pm
In reply to @johnjames "I have been diagnosed with Parkinson's 3-4 years now- really been affected by it the last..." + (show)
@johnjames

I have been diagnosed with Parkinson's 3-4 years now- really been affected by it the last 2 years, what's hard to deal with is-most al of my friends and co-workers has stopped coming around or even calling. I would say even my family at times think I'm too needy - about friendships and just being around people- which is also very hurtful to hear from those who ( I know -love me) but at times that doesn't come out maybe the way they mean it-or if I'm depressed from the parkinson's. So I have been isolating myself for the last year, not really seeing or talking to anyone and no one seems to pick up on the being alone -issues and think and tell me it's my fault, which I know it's not- God know we all need people and real friends- just to be friends. JJAMES

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Yes, you are so right. You deserve to have friend's and family close by for letting you know you matter, they love you and that all you have to do is ask. Most all of us who are caregivers do understand. I cannot believe 😪 that you are feeling all of these feeling. I feel strongly that family should share love in spite of the circumstances. You did not ask to be given this horrible disease. I have 3 people whom I love that have Parkinsons. My Dad is gone and not suffering anymore. Share as much as you like or as little as you feel you can. 🫂

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cmccarthy1115 | @cmccarthy1115 | Jun 17 8:07am
In reply to @hopeful33250 "Hello @cmccarthy1115, I want to join @lisalucier in welcoming you to the PD support group on..." + (show)
@hopeful33250

Hello @cmccarthy1115,

I want to join @lisalucier in welcoming you to the PD support group on Mayo Connect. I see that you are interested in discussing the patch with others. Here is a link to a discussion thread where the patch is discussed: https://connect.mayoclinic.org/discussion/neupro-patch/?pg=1#chv4-comment-stream-header. Here you will meet members like @mariemarie who has used the patch,

As you only mention the medicine you are taking, I'm wondering what other therapies you have tried. For instance, have you had physical therapy? Do you exercise regularly? I realize how difficult it is to exercise when you have pain and stiffness; however, exercise can help with these symptoms. Here is a link to an article (from the Parkinson's Foundation) that discusses the value of exercise in relieving the motor and cognitive symptoms of Parkinson's: https://www.parkinson.org/library/fact-sheets/exercise

Have you been referred to a physical therapist yet?

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I have been to PT, completed the LSVT BIG Program , and walk the track. However, I recently twisted my leg and as a result have a tear in my meniscus and a stress fracture in my knee. I hope to go back to exercising as soon as my knee heals.

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1 reply
cmccarthy1115 | @cmccarthy1115 | Jun 17 7:59am
In reply to @jtes "Ask Mayo about Botox injections for your thigh pain. My husband gets them every 3 months..." + (show)
@jtes

Ask Mayo about Botox injections for your thigh pain. My husband gets them every 3 months and they make a big difference in toe curling and muscle rigidity. Best of luck with your appointment, Catherine.

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Thank you I will investigate the Botox injections.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 17 6:10am
In reply to @cmccarthy1115 "Hi I am new to these discussions. My name is Catherine and I have been diagnosed..." + (show)
@cmccarthy1115

Hi I am new to these discussions. My name is Catherine and I have been diagnosed with Parkinson’s for about 2 years. I am going out to the Mayo Clinic in Scottsdale Arizona in a few weeks as I am looking for some alternative treatments. Currently I take Crexont 3 times a day but I suffer off time about every 4 to 5 hours or so and have to supplement the Crexont during the night in order to sleep. I suffer from pain in my right thigh and throbbing throughout my body. Since I started taking the Crexont I have begun to show symptoms of dyskinesia. Can you tell me about the patch?

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Hello @cmccarthy1115,

I want to join @lisalucier in welcoming you to the PD support group on Mayo Connect. I see that you are interested in discussing the patch with others. Here is a link to a discussion thread where the patch is discussed: https://connect.mayoclinic.org/discussion/neupro-patch/?pg=1#chv4-comment-stream-header. Here you will meet members like @mariemarie who has used the patch,

As you only mention the medicine you are taking, I'm wondering what other therapies you have tried. For instance, have you had physical therapy? Do you exercise regularly? I realize how difficult it is to exercise when you have pain and stiffness; however, exercise can help with these symptoms. Here is a link to an article (from the Parkinson's Foundation) that discusses the value of exercise in relieving the motor and cognitive symptoms of Parkinson's: https://www.parkinson.org/library/fact-sheets/exercise

Have you been referred to a physical therapist yet?

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1 reply
jtes | @jtes | Jun 17 5:46am
In reply to @cmccarthy1115 "Hi I am new to these discussions. My name is Catherine and I have been diagnosed..." + (show)
@cmccarthy1115

Hi I am new to these discussions. My name is Catherine and I have been diagnosed with Parkinson’s for about 2 years. I am going out to the Mayo Clinic in Scottsdale Arizona in a few weeks as I am looking for some alternative treatments. Currently I take Crexont 3 times a day but I suffer off time about every 4 to 5 hours or so and have to supplement the Crexont during the night in order to sleep. I suffer from pain in my right thigh and throbbing throughout my body. Since I started taking the Crexont I have begun to show symptoms of dyskinesia. Can you tell me about the patch?

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Ask Mayo about Botox injections for your thigh pain. My husband gets them every 3 months and they make a big difference in toe curling and muscle rigidity. Best of luck with your appointment, Catherine.

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1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | Jun 16 10:14pm
In reply to @cmccarthy1115 "Hi I am new to these discussions. My name is Catherine and I have been diagnosed..." + (show)
@cmccarthy1115

Hi I am new to these discussions. My name is Catherine and I have been diagnosed with Parkinson’s for about 2 years. I am going out to the Mayo Clinic in Scottsdale Arizona in a few weeks as I am looking for some alternative treatments. Currently I take Crexont 3 times a day but I suffer off time about every 4 to 5 hours or so and have to supplement the Crexont during the night in order to sleep. I suffer from pain in my right thigh and throbbing throughout my body. Since I started taking the Crexont I have begun to show symptoms of dyskinesia. Can you tell me about the patch?

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Hi, @cmccarthy1115 - thanks for joining this discussion on living with Parkinson's. I'm truly sorry to hear you are having some challenges with sleeping and with pain.

I'm hoping others here in this discussion such as @pbarr @hopeful33250 @jtes @gumbo will speak to your off time, the pain in your right thigh and throbbing throughout your body, and the symptoms of dyskinesia.

cmccarthy1115, will you share more about the "off time" you mentioned?

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cmccarthy1115 | @cmccarthy1115 | Jun 16 3:29pm

Hi I am new to these discussions. My name is Catherine and I have been diagnosed with Parkinson’s for about 2 years. I am going out to the Mayo Clinic in Scottsdale Arizona in a few weeks as I am looking for some alternative treatments. Currently I take Crexont 3 times a day but I suffer off time about every 4 to 5 hours or so and have to supplement the Crexont during the night in order to sleep. I suffer from pain in my right thigh and throbbing throughout my body. Since I started taking the Crexont I have begun to show symptoms of dyskinesia. Can you tell me about the patch?

REPLY
3 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 9 10:53am

Hello to everyone in the PD support group. I just received an email from The Davis Phinney Foundation with information about its June webinar. As you can see, when you open the link, the discussion will be on the emotional and mental health implications of PD on both the patient as well as the caregivers. I would encourage you to register for the meeting. If you are registered, but cannot attend, you will receive information on how you can view the webinar at a later time.
http://dpf.convio.net/site/MessageViewer?em_id=23243.0&dlv_id=32646&pgwrap=n

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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!

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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?

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