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

@pmm1949 - welcome to Mayo Clinic Connect. How have you been doing since your diagnosis?

@goatgirl28 - hoping that members here, such as @meg17 @hopeful33250 @boatman12 and others, will share any material they have read that might show you what to expect with your Parkinson's disease.

Hello @goatgirl28

I would suggest that you visit the Davis Phinney Foundation website. They have excellent videos featuring PD patients, as well as webinars with movement disorder specialists. You can learn a lot from this website.

It, of course, is impossible to know what you have to look forward to when it comes to Parkinson's. We are all so different in the way our bodies respond to this disorder. There are important lifestyle changes you can make that can help with Parkinson's, including eating a healthy diet and exercising regularly. Tai Chi has been proven to be very helpful for PD patients. Tai Chi exercise videos are available on YouTube for free.

Here is a book that might be helpful for you:
How to Reduce Symptoms Through Exercise, by Kristine Meldrum (Author), Bastiaan R. Bloem (Foreword), & 2 more.

What are your most troublesome symptoms now?

@hopeful33250 Thank you for your recommendations. I am challenged most by tremors and abdominal clenching. It is tough o exercise when I am curled up on the floor.

@hopeful33250 Hi! I have dystonia and was recently diagnosed with parkinsonism. Would love more information on what to expect with parkinsonism. I am not levodopa responsive and will be returning to mayo soon to see if it’s progressing. Thank you!

Hi @lind83, how does your Dystonia affect you and what dose Levodopa have you tried?

I have Generalized Dystonia since childhood that progressed through out the years. Most affected is my neck and eyes which I get botox for. My walking started to worsen so I went to mayo and was tested twice and failed the physical testing for parkinsons. I tried carbidopa/ levadopa when first diagnosed with dystonia ten years ago and we stopped it as it wasn’t working. Tried it again three times after going to mayo and first try got violently sick. He tweaked it which help with the nausea but then my blood pressure went crazy low and I almost passed out. The toughest part of dystonia is definitely the twisted neck and the walking followed by the exhaustion of muscle spasms. I try to keep as active as I can and pt really helped!

Hello @lind83

I am so glad that you will be returning to Mayo soon for an evaluation for Dystonia. On Mayo Clinic's website, I found some information on this disorder. Here is the link: https://www.mayoclinic.org/diseases-conditions/dystonia/symptoms-causes/syc-20350480.

What is your most difficult symptom now?

This will be my third visit to Mayo after being diagnosed with Parkinsonism. I’m going to see if it’s progressing. The most difficult part of having these two movement disorders would have to be walking, dizziness at times, and the constant pain due to cervical dystonia. Also the exhaustion! I try to keep as active as I can and a positive attitude.

@lind83 It is so good to hear that you try to stay active as well as positive! Those are great goals to have. I look forward to hearing from you, especially after your appointment at Mayo. Will you keep posting?