I have advanced Parkinson's with my main symptoms being debilitating fatigue and dystonia in my legs. I had bilateral DBS surgery 3 years ago and then a Duopa pump added to the mix a year ago. The dyskenias are relatively new. I get botox shots in my mouth, neck and shoulder. These are partially for the dystonia in my neck and shoulder and partially for the dyskenias in my mouth. Recently, I have begin having dyskenias on a daily basis. I find them exhausting. How do you relax? Help
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Exercise helps me when my body is “doing the dyskinesia dance”. I ride my theracycle. My movement specialist added amantadine to my senimet and Entacapone . I have less off time, feel better and have almost no dyskinesia. Dyskinesia makes me very tired. I go to a gym for silver sneaker classes 2 or 3 times a week. Exercise is a must for me.
Excuse the typos just getting over a bad Hypo struggling to type, I have Apomorphine, Amantadine twice a day Rotigotine patch overnight plus others I try and reduce or increase the amount of Apomorphine I give you myself as to the severity of the Dyskinesia, more Apomorphine more Dyskinetic I am, less and I struggle with freezing and rigidity, it's a case of the lesser of the two evils I'm afraid, but I'll have a go at what works for you!!! Regards Gavin Tomlinson 😁🇬🇧
I feel for you! I had DBS surgery and while ago and the doctor was tweaking my generator in. On my way home I ended up taking a pill (carb/levo 50/200) and this put me into dyskinasia for about 6 hrs. I agree it is very exhausting. I laid on the floor flinging my arms and legs and tightening up with cramping. The only thing I can say is you can only work through it. I wish you good luck.
I get the shakes often when falling asleep. i listen to Brazilian music. That helps some. I know I will progress but I have regular visits to my movement specialist and recentl increased my carpadopa to 5 pills a day
I believe that I should include the past couple of years and the journey that I am on. I think the pandemic caused a lot of grief to many. I was no different. I think that it cut both my husband and I from the herd . He has been quicker to reintegrate than I have. We still do Zoom Church. Getting up early is hard for me. That's not changing.
PD can weed out those who are "fair-weather friends" , but that isn't always a blessing for my life. Sometimes, I would like someone who can weather PD, but then they aren't "invested", like I am. So I spend a lot of time hiding my sadness and loneliness and fighting depression.
Well, I am ready for a nap. Naps DO help. They help me to have the energy needed to live with PD. Now if we can just make PD fun!