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Hello @jemnelson and welcome to Mayo Clinic Connect. I am glad to hear that your husband finally has a diagnosis after 9 years of dealing with symptoms., That must be a relief to have a name to attach to a problem. Here is some information about this disorder from Mayo Clinic's website, https://www.mayoclinic.org/diseases-conditions/corticobasal-degeneration/symptoms-causes/syc-20354767.
Many symptoms are listed pertaining to this disorder. Does your husband show many of these symptoms?
What treatments or therapies is your husband receiving now? I'm thinking of meds, speech/swallowing therapy or physical therapy?
I would like to invite @howardjames and @dmkmom04 who have both mentioned a similar brain disorder as the one your husband has. I hope they will join this conversation as well.
I look forward to hearing from you again.
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He shows all of these and more!!!!!
He has been on levo dopa. Doneprazol and now back on amantidine. Amantidine caused edema of ankles to swell. Stopped it, but it helped with choking, so he went back on at half dose. Meds don't seem to help because he reacts to them. Also on clonazepam for sleep disorder. He has been on pt., ot and sees a swallow disorder specialist. Swallowing, choking and spitting has become a major issue. Involuntary facial, tongue and hand shaking is new within the last 2 months.
At this point he drags his left leg, clenched left hand, rigidity, memory issues, constipation, right hand shaking, swallowing problems, weight loss continues, down to 127#. You ask and he has it. His body spasms 24/7 without pain thank goodness.
Dr. feels there is nothing more to do. Sending palliative care to come in. He is 72 years young. Started just before retirement!!!
Really sucks. He can't be left alone for very long, high risk for falls.
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