PSP - Are any two cases alike?

[journeyofjoy]

My husband (Sandy) and I went to our first Atypical Parkinsonism support group. He was just diagnosed a week ago although we had been expecting this diagnosis for a while. There were about 10-12 people, mostly PSP, a few with CBD diagnoses. You would have thought there were many different diagnoses in that room.

My husband's main symptom now is that he cannot walk. He's also got a few things like feet and a hand that wants to "float" and when he grips something, he can't easily let go. He doesn't have that "gaze straight ahead" although I've seen that occasionally with him. A lot of these people were talking about the trips they were taking. Our trips are to the doctor, to church if we can get out the door in under three hours, and a stroll around in his wheelchair. My husband doesn't have any trouble with speech or swallowing at this point.

His first symptoms were about 4+ years ago, starting with stiffness in his legs. He also has an MS diagnosis so it's hard to pinpoint when this actually started, although the neurologist says MS is not the culprit in what's going on now. I wish I had some idea of where he is at in this illness. If I did, I would bring in more help but I feel like we need to be conservative with our assets for the long haul.

Thanks for listening and I would love any input you have to offer.

Joy

[Dadshelper]

These diseases have symptoms A-Z with side issues relating to the various symptoms. All patients won't experience every symptom nor even have them in the same order. Most will have movement issues and swallowing issues, when..who knows. You will finding yourself reacting to whatever pops up. If you have an OT talk to them about any devices to make life easier. Ask any questions you may have.

Ron

[Tttp in reply to Dadshelper]

Hi there sorry he has been diagnosed with psp, it’s like a roller coaster everyone has about the same symptoms but then some don’t you learn to take one day at a time, I would like to mention record his voice from time to time, wishing you and your hubby the best

[rriddle]

There are five different types of PSP. People with the same type of PSP have remarkably similar symptoms though, still, everyone has a different journey.

[journeyofjoy in reply to rriddle]

Can you please list the five types? Dr Khemani did not mention these. Just PSP clinical diagnosis with CBD overlap. I know these things are difficult to pin down.

[journeyofjoy in reply to rriddle]

Mistake - CBS overlap. I did find an article on the five types of PSP. I'll do more reading on it but if you have anything to add, I'd appreciate it. Thank you.

[rriddle in reply to journeyofjoy]

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