Living with Parkinson's Disease - Meet others & come say hi

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.

Profile picture for Teresa, Volunteer Mentor @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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Profile picture for johnjames @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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I want to join a support group about Parkinson's....

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Profile picture for ecarvalho @ecarvalho

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

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@ecarvalho, welcome to Mayo Clinic Connect. If you want to join an online support group about Parkinson's, you've come to the right plac.

Do you or a loved one have Parkinson's? If so, when was the diagnosis?

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Profile picture for ecarvalho @ecarvalho

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

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Welcome to the site.

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Anyone have any recommendations for exercise or if physio is helpful to get a routine going of movement and exercise?

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Profile picture for cmccarthy1115 @cmccarthy1115

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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Hi, My name is Rhonda and I also have Parkinsons. I was diagnosed about 7 years ago. Right now you and I have similar situations. I am probably going to have to have knee surgery. I can't exercise now either. I have also taken the LSVT BIG program. Have you heard of Parkinson Voice Project? I want to give you some information about this program that you can do online or in person. This program will help you regain and retain your ability to speak and swallow. And it is never too early to start SPEAK OUT! therapy. This is a program offered to people with PD for no charge. Please go to ParkinsonVoiceProject.org and find a Speech Language Pathologist trained in SPEAK OUT! Most of them offer virtual or in person treatment. 90% of people with Parkinson Disease will have speech or swallowing issues. Even if you are not having any problems you still need to go through this program. Remember, there is no charge and no bills to your insurance. PVP is a non profit organization and the only company in the world to offer this program. I went through the program in 2020 and my voice remains strong. The program is proven to be effective I continue to practice nearly daily. I can mail you a brochure if you would like to share your mailing address. Please visit their website at ParkinsonVoiceProject.org. There are links to click on about half way down the page. A really good one is "What is Parkinson's" video. Another would help you to find a Speak Out Provider in your area. And as long as you are treated at a Therapy and Research Center there will be no charge. And at the top of the page under "Our Program" go to Testimonials and listen to what others have to say about the program.

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Profile picture for ecarvalho @ecarvalho

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

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I just joined. My husband has recently been diagnosed with PD. Also, I just lost a dear friend to the disease. I am in the research stage - learning all I can and buying enough equipment to start my own medical supply store! I know I'm in for the long haul.

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Hello @lyndavdp and @susanarch, and welcome to the PD support group on Mayo Connect. I can understand your need for information and support as you are dealing with a PD diagnosis.

First, @lyndavdp, there are great physical therapies for Parkinson's. I recommend you ask your doctor for a referral to a physical therapist who specializes in PD. There is a great program, Big and Loud (https://www.lsvtglobal.com/LSVTBIG), which addresses the movement and the voice problems associated with a Parkinson's diagnosis. Exercise, along with medication, is important to delay disability associated with PD. Have you been prescribed medication? If so, is it helping with your symptoms?

@susanarch, I'm so glad you are helping your husband with this new health challenge. Learning all you can is important. Has your husband begun medication yet? What about physical therapy?

To you both, I recommend that you check out the Davis Phinney Foundation website. They have lots of videos where PD patients and neurologists speak on many issues related to Parkinson's. Here is a link to the website,
https://davisphinneyfoundation.org/
If you go to the website, you will find numerous resources for patients and videos of webinars. These can be helpful in your understanding of this neurological disorder.

When I was diagnosed, my main symptoms were a gait disorder (when I was tired, I couldn't walk straight, but veered to the right side). I also had balance problems and a very soft voice. What symptoms led you to see a neurologist?

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Profile picture for ethel2017 @ethel2017

Hi, My name is Rhonda and I also have Parkinsons. I was diagnosed about 7 years ago. Right now you and I have similar situations. I am probably going to have to have knee surgery. I can't exercise now either. I have also taken the LSVT BIG program. Have you heard of Parkinson Voice Project? I want to give you some information about this program that you can do online or in person. This program will help you regain and retain your ability to speak and swallow. And it is never too early to start SPEAK OUT! therapy. This is a program offered to people with PD for no charge. Please go to ParkinsonVoiceProject.org and find a Speech Language Pathologist trained in SPEAK OUT! Most of them offer virtual or in person treatment. 90% of people with Parkinson Disease will have speech or swallowing issues. Even if you are not having any problems you still need to go through this program. Remember, there is no charge and no bills to your insurance. PVP is a non profit organization and the only company in the world to offer this program. I went through the program in 2020 and my voice remains strong. The program is proven to be effective I continue to practice nearly daily. I can mail you a brochure if you would like to share your mailing address. Please visit their website at ParkinsonVoiceProject.org. There are links to click on about half way down the page. A really good one is "What is Parkinson's" video. Another would help you to find a Speak Out Provider in your area. And as long as you are treated at a Therapy and Research Center there will be no charge. And at the top of the page under "Our Program" go to Testimonials and listen to what others have to say about the program.

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Thank you I will look into the Voice program

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