PSP Association
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PT/OT

I've been to my husband' medical appointments and watched our neurologist do his series of tests, but watching Paul in PT/OT I can see a definite difference in strength and reaction time on the right side. He also tends to hold his right arm/hand rather limply. Does this sound like PSP symptoms to you? His symptoms began 2 yrs ago.

Here in the USA, everyone is awaiting the solar eclipse happening on August 21st. That's the exciting news. And everyone is also Sickened by hatred shown in the state of Virginia. Thanks.

Joan

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Joan my husband's right side including his hand was definitely weaker. Not sure if everyone has this as they say everyone is different. That is true but there are definite similarities with some people and how this develops. My husband's condition moved quite fast. Others last for years. Perhaps it depends on how soon it's diagnosed?

A group of people I know are getting together in France this week. One is from Texas and she asked about the eclipse. It seems it will only be a partial one in France. The best place to see it this side of the Atlantic is Ireland/Scotland/Wales it appears. However I think the Southwest of England should be good too. It is quite spectacular. You will enjoy it.

Sorry about all the trouble in Virginia too. It's so sad. I was shocked to see the Klu Klux Klan emerge again. I thought those bad days had gone away. Very sad for everyone and scary too?

Marie x

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i ag e ee marie

lol jill#

xxxxx

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Hi Marie,

These groups have been kept underground and out of our minds for a long time. Very scary.

Scarier is living with someone with psp. It's really starting to sink in that he is getting worse.

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Hi joan. My hubby has psp and its his left side head hand body leg foot that is affected. I just prop him up with cushions. Nothing else to do really.

Not sure if we'll see the eclipse here in london but our eyes will be peeled.

As for all that hate/bigotry rising its ugly head again, hopefully the authorities will stamp it out.

Ive just seen a news article about a new virus/germ that is hitting our hospitals. A japanese horridness that seems to be resistant to our disinfectants at the moment. Just another thing to drive us round the bend. Anywsy. Good luck and take care. Marie

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Did your husband go through the physical therapy stage? Did it help with the balance?

Thanks, joan

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Dad had a few falls, right arm slowly become hard to move and then shuffling gait were among the first noticeable symptoms.

As for the eclipse I am going to be right in the path, I'll see ( with proper eye protection) the full thing come Monday afternoon.

Ron

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I'm in western NY, where we are supposed to get 85% occlusion. The glasses I ordered won't come in time, and I've heard so much about the market being flooded with fakes that won't save your eyes, I am thinking I will have to stick to the pinhole trick. Not worth blindness! Be careful everyone!

And yes, the resurgence of the racism here is horrifying.

Love and peace, one and all, ec

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Where do you live Ron

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around the St. Louis area, east side of Missouri

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My husbands right side started getting limp a few years ago. We thought he had a mini stroke but now I realize it was PSP 💛🙏

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Joan,

One-sided symptoms can be a sign of corticobasal degeneration.

Robin

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I know, that's why I was questioning the diagnosis. Although the outcome seems to be the same.

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My 51 year old fiance has been diagnosed with a combination corticobasal degeneration CBD and PSP. His speech is very slurred at times and his hands grip so hard i can barely release thrm from anything he touches. His right eye has trouble staying open and he has bad neck spasms. He can walk rather well...but seems like a man walking in his 80s or 90s. I am 46. Ive stayed with him and watched the decline since the diagnosis 2 years ago. Oh....and he gets irritated and angry like a 4 year old at times. It breaks my heart and i cry every day for a bit. I am his 24 7 caregiver but will go back to teaching in sept. I have to help him in out of bed and chairs. Any suggestions for the awful and painful gripping? We are from New Jersey.

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I too can't stop crying some days. I'm also his 24/7 carer. Paul isn't nasty anymore. The personality changes were the first signs.He's just indifferent to everything. I've felt that grip but he does it mostly in his sleep. I really believe that cannabis oil literally relaxes his muscles and helps his moods too. We're from Central New Jersey. Are you nearby? Not many of us around from what I can tell.

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Wow. Yes...well we are close. Living in western nj right now. I want him to try the cannabis oil on a steady basis. Would like to talk to you more. We are currently in FL. It is nice to be away but certainly still a lot of caregiving work. Hope to talk to you when we get back.

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Yes I would too.

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