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Parkinson’s unresponsive episodes.
Hello @beloved1 and welcome to Mayo Clinic Connect. Thank you for joining the discussion to share what you have learned and what you are doing for your husband for his episodes of unresponsiveness.
Can you share more about the elliptical regimen and how that has been helping him?
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The elliptical I am speaking of is a special piece of proprietary equipment used by Madonna rehabilitation here in Lincoln Nebraska. The therapy department had it designed for people with head injuries. The physical therapist used it to have the synchrony of movement for his arms and legs. The machine can be set for speed, stride & intensity. Because of the LBD and varying degree of unpredictable weakness he was unable to use a regular elliptical. The trainer sets the machine for Dave to” walk big” . His feet are strapped in. He has a personal trainer or a physical therapist monitoring and watching him. They help him sit on a bench that’s built into the machine when he needs a rest. The exercise helps a lot of things, endurance, strength training & rhythmic movement that helps retrain the brain through big movements.? Having a trainer takes the pressure off me to motivate him. It’s some thing he very much looks forward to twice a week. When he began physical therapy with this machine a year ago,! he was only able to do five minutes at a time. Within four months he was able to handle 20 to 30 minutes on a routine basis. He also went from using a wheelchair to being ambulatory. He sleeps better. He Thinks better and is experiencing What I believe is A delay in progression of his LBD. We no longer have what used to be hours of laying on the floor because he was unable to move or get up. Falls are far fewer, and he is able to be helped up with in minutes after experiencing a freeze and collapse. He has also been able to enjoy a 20 minute walk on a walking trail in the couple of weeks. We had tried respite caregiving before therapy, but found the money was better spent on helping my husband get the therapy that helps him function better. He is also not having to use as much carb/levo as he did before beginning the therapy in February of 2020. He takes 12 pills instead of 16 per 24 hours. (2 tabs every 3-4 hours during the day while awake.) so 25% reduction in carb / levo which means fewer episodes of hallucinations as well. It has been a very encouraging year overall. We still had off days, but the possibility of a better tomorrow gives hope.
Dave had a very severe episode of nephritis this April which robbed him of everything he had accomplished in the past year. However, after getting the infection under control, he was able to go home instead of a skilled care facility. He is back in Physical Therapy and improving with each visit. He is almost back to his baseline before he became ill. I am so thankful I did not give up his care to an institution. He is far better cared for here at home with outpatient trips for quality physical therapy twice a week. That week in the hospital was a grim lesson in the pitfalls of institutional care. There is no place like home.
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