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

My husband is on Sinemet 25/100 4X day. He previously was on Crexont but he also has sinus bradycardia so the Instant Release C/L seems better for him.

@spatase Just out of curiosity, is your husband on a medication for PD? My husband experienced the hot/cold while on Seroquel. So many changes. I'm with you!

@hopeful33250 He has seen two PD movement disorder specialists but they dismiss the autonomic symptoms and are happy they have addressed the minor tremors. He gets hot/cold waves that attack him hourly - he is either experiencing teeth chattering with nearly blue hands and cold body or he's sweating with a burning sensation on his face and sweating in the groin and his feet even sweat. It makes him unable to do anything because he's either undressing or adding clothes to try to find a middle ground of comfort. It is taking a toll on him emotionally and he says he doesn't know how much longer he can live like this.

Thank you for your encouraging words. I will definitely keep posting and will let you know how my visit goes. Thank you, Teresa! ❤️

@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?

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.

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?

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!

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

@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!