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Progressive Supranuclear Palsey discussed here?
PSP is very rare, no way to test it, and no way to treat it. It usually starts with falling, balance problems, speech problems, memory loss, confusion, and walking problems. PSP is misdiagnosed as Parkinson’s. Is there anyone who has been diagnosed with PSP. If so, can we start a group or discussion?
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What is different about the two?
Hello @bentwood and welcome to Mayo Connect. On Connect there are discussions on this topic. Here is a link to one of those discussions from the Brain and Nervous System Support Group. Please feel free to post to any of the members in this group if you would like to ask questions.
https://connect.mayoclinic.org/discussion/anybody-know-anything-about-progressive-supra-nuclear-palsy/Mayo Clinic's website also has some information about this disorder. Here is the link to that information:
https://www.mayoclinic.org/diseases-conditions/progressive-supranuclear-palsy/symptoms-causes/syc-20355659Is this disorder something you are currently dealing with?
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1 ReactionCurrently just been diagnosed with psp and have just started falling (regularly) over 6 months ago. Nothing else now. Obviously I am upset about the final outcome. I’ve now seen a few people who are stages away from me (those who can’t talk, for instance) and at this moment, I am wondering what I can do for myself.
Thank you for any information.
Ginger Harrison
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Hello Ginger,
I'm not sure if you looked at the link from Mayo Clinic's website that I posted on May 4, Mayo Clinic's website also has some information about this disorder. Here is the link to that information:
https://www.mayoclinic.org/diseases-conditions/progressive-supranuclear-palsy/symptoms-causes/syc-20355659
However, here is a copy of the information (on that website) about treatment options that you might consider. After reading about these treatments, will you let me know if your doctor has suggested any of these treatments?
Treatment
Although there is no cure for progressive supranuclear palsy, treatments are available to help ease symptoms of the disorder. The options include:
Parkinson's disease medications, which increase levels of a brain chemical involved in smooth, controlled muscle movements. The effectiveness of these medications is limited and usually temporary, lasting about 2 to 3 years in most patients.
OnabotulinumtoxinA (Botox), which may be injected in small doses into the muscles around your eyes. Botox blocks the chemical signals that cause muscles to contract, which can improve eyelid spasms.
Eyeglasses with bifocal or prism lenses, which may help ease problems with looking downward. Prism lenses allow people with progressive supranuclear palsy to see downward without moving their eyes down.
Speech and swallowing evaluations, to help you learn about alternative means to communicate and safer swallowing techniques.
Physical therapy and occupational therapy, to improve balance. Facial exercises, talking keyboards, gait and balance training also can help with many of the symptoms of progressive supranuclear palsy.