My wife has had PSP for about 5 years now and is experiencing the classic indicators of the disease. She has a PEG tube, difficulty swallowing and is on a honey thick diet, has difficulty talking, minimal jaw opening and neck movement, and of course no vertical eye movement. She was hospitalized 3 times this year for aspiration pneumonia. I have retired early to care full-time for her and she is currently receiving both physical and speech therapy.
The reason I am writing to you is the recent improvements we have seen in her ability to swallow. In the speech therapy the therapist has been applying electrical stimulation to both her swallow muscles and her jaw muscles for about 2 months, typically 3 times a week. I have noticed much improved swallowing during meals and because of that we had another barium swallow test performed 2 weeks ago. She passed on both honey thickened and nectar thickened liquids. Her 2 previous barium swallow tests showed only passing with honey thickened liquids.
If anyone wants the specifics I can find out what equipment is being used and placement details.
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ForkLover
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That's very interesting! So glad to know there is a possibility of improvement at that stage. My guy got a lot of benefit from the exercises his speech therapist gave him early on the progression, which I think helped fend off the standard deterioration for a long time. He began swallowing more mindfully all the time. He never had to have a PEG.
Hello! Thank you for asking. We are still plugging along. He is 80 today and if it weren't for the PSP, on paper he would be considered in great shape. His spirits are good and he looks good. He still eats regular food --slowly (right now Dave is eating salmon and eggs), but does have the PEG. I am so glad he agreed to that. We laugh because after years of trying to lose weight, he said he has finally got to his goal weight. He is still on the Biogen clinical trial and takes his mass of supplements. Up until July I thought it was going well, then a chunk of progression kicked in. I don't know why. Even though he is not stiff, his movement and speech are more challenged, though he still gets up everyday and exercises. December he enters his 8th year since initial diagnosis, so I am grateful he has gotten this far.
My song to keep me going is "Come healing" by Leonard Cohen. youtu.be/MUB1O2cT2gM
How are you doing? I hope you have found at least a modicum of peace. Your beautiful fall and winter colors should be coming soon and a time for good memories.
My mother also is starting to have difficulty with Swallowing at times. She was diagnosed with PSP 3 years ago but she has had it for longer like at least 4 years. She also has difficulty with vision and neck movement. She is currently working with a speech therapist at home. Does the speech therapist for your wife come to the house to do the electrical stimulation therapy?
Thank you for sharing this information. Best to you and your wife. I understand what you are going through.
That sounds great !! Please provide us with the equipment she is using so that we can use it on my husband who suffers with the cane symptoms do to psp
Dear Forklover - I would love to hear details about the therapy your wife received. I’m so pleased for you both that it has made a difference. My mum has PSP and is on the verge of making the decision whether to have a PEG fitted because her swallowing - particularly fluids - is not good. She lives in Western Australia so I would have to get in touch with her speech therapist to see if they were able to offer it there. Best wishes to you and your wife.
My wife had that done as well for a few sessions, but we didn't really see much improvement. Unfortunately PSP moves like a freight train, and anything gained with PT, OT, and ST, can vanish within a few weeks or months. I was willing to try anything to save my wife and improve her quality of life, and I encourage others to do the same thing. No two people are the same and you never know if you try something that could make a remarkable difference.
Hope it works for your wife. We had a family member in our local support group who had to go to the ER after a VitalStim treatment. The jugular vein had been affected.
Hi there .Just read your article on electrical therapy..Yes I would like to know more off the specifics and equipment needed. My wife is 6yrs on now with PSP and is struggling to swallow. Yours Chris
God bless your wife . It brings a smile to read such notes, where there is sudden brightness amongst this dark dirty illness. My mum is in the same situation. Can you kindly share what Therapy is being used . Hugs and best wishes to your wife and you .
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