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.

shambunny | @shambunny | Oct 16 10:42pm

I've been diagnosed with Parkinson's for about 2 years. I also have Scoliosis and Dystonia. I have a DBS implanted in 2020. It's controlling my tremors, but I'm only 63 and generations of women in my family live from 93 to 98. I'm scared. I don't want 30 more years of an incurable, progressive disease.

Teresa, Volunteer Mentor | @hopeful33250 | Oct 16 10:21am

In reply to @barryl "I go to silver sneakers three times a week and do the stuff that I can,..." + (show)

@barryl
It sounds like you are doing as much physical activity as your heart condition allows. I also have heart problems as well as problems with vertigo, so I somewhat understand some of your limitations.

I would encourage you to do what you can. Have you been referred to Big and Loud? This is a physical therapy program specifically developed for those of us with PD. This helps both the physical problems and the speech problems. Here is a description of the program: https://www.lsvtglobal.com/LSVTBIG.

I would also encourage you to check out the Davis Phinney website. The Davis Phinney organization is devoted to research and education for PD patients. There are many helpful videos that deal with the symptoms of PD. Here is a link to its website, https://davisphinneyfoundation.org/.

Complex medical issues can make you feel overwhelmed. Education, support, and activity can help.

barryl | @barryl | Oct 16 9:47am

I go to silver sneakers three times a week and do the stuff that I can, and limit stuff that makes me dizzy.

barryl | @barryl | Oct 16 9:45am

I'm on Carbidopa Levodopa. My neurologist only wants me to add one med at a time. In early December I will see him again to evaluate how this medicine is working.
My heart disease limits my exercise to a few minutes.

barryl | @barryl | Oct 16 9:39am

I have serious issues with balance and dizziness causing falls, some with injury. Constipation and urinary incontinence are always a problem. Dry mouth, eyes, and skin.
I also have Ischemic Heart Disease and Hypothyroidism. All of these three diseases are caused by agent orange exposure when I served Vietnam.

Teresa, Volunteer Mentor | @hopeful33250 | Oct 16 8:42am

In reply to @barryl "@macbeth I also have Ischemic Heart Disease, as well as Hypothyroidism, and I was recently diagnosed..." + (show)

Hello @barryl and welcome to the PD support group on Mayo Clinic Connect. I'm glad that you found this forum. It is important to have a place to share your experiences with others. I understand that you watched a friend deal with Parkinson's and that it was difficult to see him slipping away. Please know that each person's experience with PD is different.

Some of the most important things about having PD are to combine regular exercise with the medication. This exercise should be something that you enjoy doing. Exercise combined with medication can help keep you mobile for a long time.

Speech therapy is also a good resource. As many PD patients begin to have swallowing problems (as well as speech problems), regular visits with a speech therapist can lessen swallowing problems and keep your voice/speech tuned up.

Cognitive problems can be best helped with social interaction. Group exercises and other social connections are very important. Isolation is a detrminent to neurological problems.

You can find group exercises for PD as well as speech exercises on YouTube. This will help you get started.

What are your most troublesome PD symptoms right now? What types of medications and therapies have been suggested? Have you had a referral for any physical or speech therapy?

barryl | @barryl | Oct 14 2:31pm

In reply to @macbeth "I'm not sure I belong in this group, but I have a friend with PD, and..." + (show)

@macbeth
I also have Ischemic Heart Disease, as well as Hypothyroidism, and I was recently diagnosed with Parkinson's Disease.
I had a friend who had Parkinson's Disease. His wife had to go to monthly staff meetings and she asked me if I could come and stay with her husband so she could go to the staff meetings. I stayed with him over a two year period. It was a real eye opener for me to see him slipping away. When I was diagnosed with Parkinson's Disease it hit me pretty hard because I witnessed my friend during the last 2 years of his life.
I'm making changes in my plans for the future now, after watching my friend's last two years.

Teresa, Volunteer Mentor | @hopeful33250 | Oct 9 9:31am

In reply to @larias1955 "How do others deal with Parkinson's anxiety" + (show)

Hello @larias1955, and welcome to the PD support group on Mayo Connect. From your post, it sounds like PD is a recent diagnosis for you. Is my understanding correct?

You ask how to deal with anxiety related to PD. The best way to relieve anxiety is to be as proactive as possible. My suggestion would be to have an evaluation by a movement disorder specialist who can suggest medications to control the most troubling symptoms. There is also specific physical therapy that can reduce PD symptoms.

I look forward to hearing from you again. Please share what you have done so far to treat your PD symptoms.