Parkinson's Disease Support Group

hi; I'm john, I am almost 50 and was diagnosed last nov. I had symtoms for five years before I found a good neuro. who could tell me what was wrong and then help me. with my other health problems the pd has become the icing on the cake. I'm glad there are people to talk to that understand lifes new little challenges. From the posts I've read I think being here will help. Thanks for being here.

We're very happy you joined!

Steve

Glad to have you here and yes this is the right place for you we hope that you can learn from us glad to have you here.

Welcome John....The people here are great!

Welcome to the group, John,

If you're looking for understanding, encouragement, support and a bit of friendly advice this is definitely the place to be!

look forward to seeing you on the forum!

Hugs,

Kathleen

Welcome John, I'm glad you found this website!!! We do try and help each other and we also like to laugh and pick on each other from time to time!!! Sometimes if we don't laugh we might just start feeling sorry for ourselves and that gets to be old after awhile. But everyone has the right to feel sorry once in a while for ourselves, just don't let the PD take over your life. You take control of it.

Again, glad to have you in the MDJunction Family

I am brand new and haven't figured out how to navigate around in here yet. I don't even know if this is the right place to ask this question, but does anyone have ideas on what to do when your PD makes you have uncontrollable movements and sounds in front of strangers? It makes me want to go home and isolate myself. And that cannot always be done. Help!

Janet Killam

Hello, Janet! Welcome!

It's called dyskinesia. It's a side effect of your PD meds. Talk to your neurologist about it. (Make sure your neurologist specializes in Movement Disorders!

Steve

Thanks so much for your response Steve. I never knew the name diskensia. I was told Myoclonus before. But I've always had a lot of movement and now have a lot less on the meds. I take requip, was on sinimet, I take Clonopin and Trazadone. On the Clonopin the movements are much more controlled. My hands are not so still that I could paint my nails or anything, but I'm better on the meds and my neurologist is at the Cleveland Clinic here in Ohio. He specializes in Neurological movement dissorders.

Does anyone out there have uncontrolled movement caused by their Parkinsons? And if so, what do you do about explaining it?

Mine scares people and that's embarassing.

I'd rather be at home, alone with my dog!

Welcome to the group Janet, ppl here will understand you & give you necessary strength to carry on living happily. No, u don't need to isolate yrself, yr 'near & dear' will grow to accept you as you are & so will you. I know th e feeling, I too want to get away from people, we have to fight that as it's supposed to be a symptom of PD getting to be reclusive. even if I don't actively participate in a conversation cos I'm tired or something I try to be attentive & be there. I have tremors & they become pretty bad for no reason but fortunately its only my right hand. I go out witih good frienids, we listen to music, we have dinner together, at timesthey have to help me cut my meats or serve myself but its ok, it's part f the deal of being with me & they seem to accept it well cos they invite me. I get a chance to dress up & look good & I feel good at the end of those outings despite a few embarrassing moments. believe me I'm feeling less & less embarrassed, those who really matter will be with me, akward movements or not. hope this is helpful.