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

Welcome @jesslily! I'm glad that you found this forum. I'm sorry to hear that you have had a lot of issues with carbidopa/levodopa (C/L). Has your doctor suggested any other PD medications? Here is some information from the Cleveland Clinic website about the different medications available to treat PD: https://my.clevelandclinic.org/health/treatments/parkinsons-disease-medications.

As you are not taking medications, are you involved in physical therapy that is specifically for Parkinson's? Do you have a daily exercise program in place?

Here is some information, from the Parkinson's Foundation website, regarding exercise and Parkinson's, https://www.parkinson.org/living-with-parkinsons/treatment/exercise

I look forward to hearing from you again.

@hopeful33250 thanks so much for your thoughtful reply! I've tried a couple of other drugs. Azilect was a disaster. Over the years I have focused on diet, exercise, and reducing exposure to environmental chemicals. I have complex chronic illness, with additional conditions that complicate simple pharmaceutical solutions.

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?

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?

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?

@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!

@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.