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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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jesslily | @jesslily | 2 days ago
In reply to @southwest "@jesslily Just FYI I have searched a lot of youtubes and settled on Power for Parkinson's...." + (show)
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@jesslily
Just FYI
I have searched a lot of youtubes and settled on Power for Parkinson's. Sitting, standing, beginner, advanced it's all there

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@southwest nice, thanks!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 2 days ago
In reply to @southwest "@jesslily Just FYI I have searched a lot of youtubes and settled on Power for Parkinson's...." + (show)
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@jesslily
Just FYI
I have searched a lot of youtubes and settled on Power for Parkinson's. Sitting, standing, beginner, advanced it's all there

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@southwest and @jessiliy,

I have found a YouTube channel, "yes2next," which offers gentle exercise videos that can be done seated or standing. I have found them quite helpful for stiffness, balance, and strength.

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nova11723 | @nova11723 | 1 day ago
In reply to @spatase "He has minimal motor symptoms - for which we are very thankful - most of his..." + (show)
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He has minimal motor symptoms - for which we are very thankful - most of his symptoms are autonomic - nausea, anxiety (High Anxiety), and total loss of his body thermostat so he is sweating profusely one minute and then teeth chattering cold the next. If sunlight hits his face, he cheeks and temp feel as if they are burning. He has to change clothes multiple times a day. We believe the nausea is mostly brought on by the medication (Crexont) but he has lost 30 pounds in the last 8 months. He does have minor right hand and leg tremor and the Crexont is helping calm that a little - but not enough to work on his computer any longer. He's distressed and depressed. He tries to exercise each day but the body thermostat issues makes long exercise difficult. Do any of you have ways to address the autonomic issues? He eats a saltine cracker every 30 minutes to help calm the nausea and he drinks tons of water. He takes Xanax when his anxiety reaches high peaks. Nothing has helped the hot/cold symptoms. Would love to learn a technique to help him. if you know of anything. Thank you friends.

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@spatase I had a bad experience with Crexont; it's side effects were too much for me to bear. It does make your "on" sessions longer, but that wasn't always a good thing when you are dealing with side effects (mostly anxiety). Have you previously taken Simenet?

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nova11723 | @nova11723 | 1 day ago
In reply to @trseaman0 "@hopeful33250 I had my DBS device done in 2010. At this point of having parkinsons for..." + (show)
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@hopeful33250

I had my DBS device done in 2010.

At this point of having parkinsons for 34 years and that it's progressing, after more than half of it with tremors, my body is exhausted. You have to remember that my tremors are ALL in my lower extremities. My legs absolutely ache and my lower back is always having severe spasms. When I had the DBS device at the Mayo Clinic, I was told that it would help with the severe dyskinesia but because the tremors were all in the lower extremities they just couldn't pin points the tremors because it so different than the signals coming from upper extremities and they still don't because this type is so rare they really don't see this.

As for the anxiety issues, my daughter has them NOT me. She is seeing a counselor every week to help her work with them. I just found her an online support group.

I just had a battery my 5th battery replacement I finally have a rechargeable unit so I will not have to have it replaced every 3 years which I'm excited about.

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@trseaman0 Do you wish you had done DBS earlier? By my calculation, you had the procedure after 19 years of having the disease. I am coming up on around 13 years and am considering it.

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spatase | @spatase | 1 day ago
In reply to @nova11723 "@spatase I had a bad experience with Crexont; it's side effects were too much for me..." + (show)
Profile picture for nova11723 @nova11723

@spatase I had a bad experience with Crexont; it's side effects were too much for me to bear. It does make your "on" sessions longer, but that wasn't always a good thing when you are dealing with side effects (mostly anxiety). Have you previously taken Simenet?

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@nova11723 hello! yes my husband started with sinemet but he had the same autonomic symptoms only more enhanced. but you do make us think that perhaps he’s still not on the correct meds. thank you

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spatase | @spatase | 1 day ago
In reply to @hopeful33250 "Hello @jesslily Having a complex chronic illness does not help when you are also dealing with..." + (show)
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Hello @jesslily

Having a complex chronic illness does not help when you are also dealing with Parkinson's. It sounds as if you are focusing on important aspects of a healthy lifestyle, including diet and exercise.

Would you like to share more about the exercises that help you?

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@hopeful33250 hello! my husband lifts light weights to help maintain some arm muscle, he does leg lifts and biceps weight machine. only about 10 minutes. he uses the elliptical machine about 5 minutes. then his body temp causes him so much anxiety that’s all he can do. he used to walk in our neighborhood but the heat of the sun on his face (even with a hat) burns his temples and cheeks. he does feel better mentally (less anxiety) after he has exercised and cooled down.

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jesslily | @jesslily | 1 day ago
In reply to @southwest "@jesslily I would be curious to know which vagus nerve stimulation device you use, and if..." + (show)
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@jesslily
I would be curious to know which vagus nerve stimulation device you use, and if it helps you.
I used a Gammacore, and now use a Truvega, which is the over the counter version. It seems to help me a little 2 get through the sleep inertia I have after napping. It may have helped more, in general, with fatigue, when I was doing 4 stimulations 4 times/day. They my bad I got lazy and now use it in th morning, within an hour of getting up, and if I remember after a day nap.

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@southwest hi. I just ordered the Nuropod and am waiting for it to arrive. Thanks for sharing your experience. Being super sensitive/reactive to medications I'm very interested in non invasive devices.

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jesslily | @jesslily | 1 day ago
In reply to @hopeful33250 "@southwest and @jessiliy, I have found a YouTube channel, "yes2next," which offers gentle exercise videos that..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

@southwest and @jessiliy,

I have found a YouTube channel, "yes2next," which offers gentle exercise videos that can be done seated or standing. I have found them quite helpful for stiffness, balance, and strength.

Jump to this post

@hopeful33250 thank you!

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hermawm9 | @hermawm9 | 20 hours ago
In reply to @hopeful33250 "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I'm excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson's. As we know, all of us are stronger together!

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@hopeful33250

I was just diagnosed today … I am still in the shocked phase of recovery.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 9 hours ago
In reply to @hermawm9 "@hopeful33250 I was just diagnosed today … I am still in the shocked phase of recovery." + (show)
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@hopeful33250

I was just diagnosed today … I am still in the shocked phase of recovery.

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Hello @hermawm9, and welcome to the PD support group on Mayo Clinic Connect.

I can understand your shock at this new diagnosis. Most of us felt the same way when we left the neurologist's office after our diagnosis.

When I was first diagnosed, I had problems with gait (I walked with a stagger), I also had foot dropping, balance issues, and a very soft voice. Many of these symptoms lessened after medication and physical therapy, accompanied by a regular exercise program. I began to feel a little bit more in control of my situation after that. Here is a link to the Parkinson's Foundation website, where exercise for PD is discussed: https://www.parkinson.org/living-with-parkinsons/treatment/exercise

Share as you are comfortable doing so, a little about what symptoms led to your PD diagnosis. What other tests were done to help diagnose PD?

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