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

@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.

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.

@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

@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

@hopeful33250 fyi, before my diagnosis I was working in mental health care for people, at end of life, living with chronic or terminal illnesses, and/or with dementia. I co-led exercise, dance and movement groups. I worked with lots of people with Parkinson's. Interesting being on the other side of it now. I dance at home and have recently discovered Dr Cuan Wayne Coetzee on FB; I really enjoy his very doable exercises designed for people with neurological disorders.

@hopeful33250 For a long time the physical activity involved in maintaining a five acre, fairly wild property was enough, combined with beach walks. In the last few years I developed debilitating dysautonomia and had to downsize into a small urban condo. My current primary exercise has just been walking. I'm just getting started with a vagus nerve stimulation device and hope to add light workouts with small weights. Returning to yoga is also a goal. Fingers crossed!

Hello @trseaman0 and welcome to the PD support group on Mayo Clinic Connect. I am so sorry to hear of your discouragement! PD can certainly be unpredictable. Anxiety can certainly make the symptoms of PD worse. It sounds like you have had many losses recently with the death of your brother and moving from your home to live with your daughter.

How long ago did you have DBS?

It is important to engage in stress-relief activities. What do you do to relieve stress? I'm thinking of deep breathing, meditation, or gentle exercise.

Have you had any physical therapy by a therapist trained to work with PD patients? Are you engaged in any seated exercise programs? Exercise can help manage stress and strengthen the body as the PD progresses.

Will you post again and let me know how you are doing?

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?

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.

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?