PSP is what I'm sure my husband has ,,,,,,,,,,

[Kolton]

need to hear others symptoms my husbands been progressively gettin worse for 7 yrs So hard to get a for sure diagnosis Interested to hear fr others he is 73

[Frosty]

Personality change , voice changes, balance and gait change . My husband was diagnosed by a neurologist that specializes in movement disorders. This is a wicked disease. He is having a lot of weight loss. Started out at 230lbs. Now he's about 150lbs. Hope this helps.

[easterncedar]

It's the gaze that provides the definitive diagnosis, I believe, although a brain scan, it has recently been determined, can confirm. (A specific area of shrinkage,) That's what our (second opinion) neurologist used. Lots of folks here talk of years of missed diagnosis, but I think awareness is increasing, so a decent neurologist should be able to discover psp. We started out trying to find a cause for my guy's weird gait and dragging foot. It was originally supposed that he had post-Guillain-Barre syndrome. The falling and the memory problems, then his fixed gaze got us to psp. Best wishes, Eastercedar

[LynnO]

Kolton,

My husband is 56 and has been suffering from symptoms for about 4 years. His neurologist still says possibly PSP or a combination of PSP/CBD. His symptoms are: Eyes hard to move up and down, and sees at any given time slightly blurry, double vision, nothing but shapes. He doesn't drive anymore because of the difficulties with space judgement. He is extremely sensitive to light, especially sun light. He has weakness in his hands, arms and legs. He always has a "drunken" quality to his walk, but doesn't always need his walker. He falls (or begins to if not caught) on an average of 1 - 2 times a week. Sometimes his hands and legs hurt. His personality has changed, he very seldom has any sense of humor (used to have a great one!) He doesn't understand a lot of what is going on watching TV. Usually it's because of the talking on there going too quickly. He has a lot of cognitive issues. Says his brain is confused, he can't get words out all the time or find the right words. Sometimes he will repeat a word or sentence over and over. A lot of activity around him is bad. It makes him VERY anxious. He won't go places because of this. He has extreme panic attacks, afterwards his brain doesn't work well at all and it takes several hours to "recover". He used to be a carpenter and could design and build things quickly and wonderfully. Now he has a hard time figuring numbers and can't keep a "picture" of something in his head. It takes him about 10 times longer to build anything and usually has to stop and redo some of the project because he has forgotten how to do something. He has bouts of anger from something that shouldn't cause anger. When he is angry, though, he can talk perfectly fine! After he calms down, he is very confused. He has problems swallowing his medication, and sometimes food. He occasionally has tremors in his hands and legs. He also has a lot of problems not sleeping. He has hallucinations. (used to be people, now has changed to insects and shapes.) Everyone is so different with symptoms, it's really hard to compare sometimes. We do still have good times of the day, and I hope you do too. What I have heard is that there are fast moving types and slow moving types of these diseases, or maybe it just depends on the person themselves. I know that it is very difficult to get an accurate diagnoses from a dr. that you see for about 20 min. every 6-8 months. It is extremely frustrating for patient and caregiver! What I do know for sure is that something is desperately wrong with my husband's brain, and we're doing the best we can to live our life in the present.

I hope you find the answers you need.

Brenda

[wifemo in reply to LynnO]

Hallucinations - my late husband Tony only had those when he was on too-strong medication.

Eventually, he was only on Baclofen to help relax him.

Mo

[LynnO in reply to wifemo]

the only thing my husband is on is daily is Gabapentin for nerve pain. His hallucinations might be the CBD part, though we're not sure. Thankfully they are not scary for him, just annoying most of the time.

[wifemo in reply to LynnO]

The hospital clinic suggested Gabapentin at one time, the dispenser at the hospital queried whether he was in pain, when I said no, PSP, she reluctantly gave them to us. Googled when we got home, and it seems they are usually for epilepsy or nerve pain. In the event Tony didn't take them, so I don''t know whether he would have had hallucinations. They did seem to keep trying things which didn't agree with him.

At the same time a friend who did have pain (kidney problem) was also prescribed them but had to give them up very quickly because they upset him so much.

We wondered at the time if they were suggesting them for everyone? (This week's fashion?)

Mo

[LynnO in reply to wifemo]

B actually started taking them for back pain unrelated to PSP. But it does seem to help with nerve pain in his hands (probably form PSP/CBD) He was supposed to be taking 4xs daily, but way too much for him so he only takes one a day. the hallucinations didn't start till about 2 years after taking them. my dad had seizures and also took them for that. The pain doc (who prescribed the gabapentin) said it numbs the nerves so helpful with nerve pain and seizures. Our neuro said to keep taking them that it would be helpful with his hands. I'm thinking if B wasn't already taking them, the neuro would not have prescribed it. Although I have heard of some people with PSP being prescribed Gabapentin specifically for PSP, so who knows. If it works without side effects, it's a good thing for the time being.

Lynn

[wifemo in reply to LynnO]

Thanks for the reply, and glad you've found something which helps.

Mo

[mcfly]

wow Brenda- that was a good answer.

other things I have noticed. it hurts my brain if I look down to read. it hurts my brain if I look at things up close and precise. I don't like driving because I get confused when traffic is coming at me (as to where on the road I am). I also have hard time at a busy intersection as things are happening too fast. I am even a worse passenger. I laugh until tears come out at inappropriate stuff and the slightest sad news makes my eyes water. Every tiime my wife turns a light on I turn it off. If she turns the volume on tv up,i turn it down. If there is lots of things happening around me ii have poor balance if I change the direction of gaze. Food does not metabolize in my brain very fast and it hurts. have dystonia in feet and ankles that twist my big toe up. Eyelid closes on the left or sags. Ther are other things, sorry can't remember

[LynnO]

Mcfly..the thing you listed seem to be quite enough! The driving part is just what my husband describes. That's why I won't let him drive. He's not very happy about that! I'm afraid for him and other people on the road. My husband also tears a lot. He calls it his leaking eyes. We're not sure what triggers them. Sometimes they just happen and he can't make them stop. May I ask how old you are? I'm always curious the age, as it seems most on this site are late 60's and up.

by the way, I like you "name" Mcfly. From Back to The Future or something completely different?

[mcfly]

hi lynno- I am 54 was Dx last year psp (mayo) / mcfly is just an name - no reason -my eyes tear many times because I don't blink much (thats what my neuro-optho told me) but also sad things make me tear up and outdoor windy breezes and bright lights -- I never drive anymore (unless no one is watching).

Also left eye foot is weak

bye lynn0

-

[LynnO in reply to mcfly]

Hi Mcfly, you and my husband are WAY to young to have something like this, although no age is a good age to have anything like this. Stay strong. You'll be in my prayers.

LynnO

[mcfly]

thanks!