MEMORY

[Auddonz]

Don is starting to forget things. He called our grandson his nephew. PSP, med, or age?

[Hidden]

Might be all three! David started out with the dementia PSP so he is having difficulties in many ways. I noticed it is harder and harder for him to remember how to operate the TV remote. He is having more trouble figuring out what day or month it is and is very confused on many things.

If only dementia was the only problem.

Take care, Audrey.

[Auddonz in reply to Hidden]

What do you mean by dementia PSP. Was that the start of the PSP? Don is having troubles with the phone and the remote. Sometimes he is fine and other times not. He is having more trouble getting up and also very weak in his legs. Yes, if only that was the only problem

Take care as well,

Audrey

[Hidden in reply to Auddonz]

Several years ago, I thought he was getting Alzheimer's. Now I know it was the PSP. My understanding is that not all PSP patients have the dementia at the beginning, but D has had it for years along with the unexplained falls, mood swings, and loss of caring and interest.

[jillannf6 in reply to Hidden]

HI I AM SORRY THAT D HAS ALL THE PROBLEMS OF PSP AND DEMENTIA AS WELL

LIFE I SNOT FAIR AT ALL IS IT

I DO NOT THINK I HAVE DEMENTIA (YET) BUT IT WILL COME I GUESS (I AM 70 NEXT YR) AND THAT WILL MAKE THINGS MORE DIFFICULT FOR ME AND MY PARTNER BTU IT IS ONWARDS AND UPWARDS AT HTE JMOMENT AS HIS FAVOURITE FOOTY TEAM WON A GAME LAST NIGHT - HE WENT TO THE MATCH AND I HAD A CARER IWHT ME FOR HTE TIME HE WAS AWAY

IT WORKS QUITE WELL AND PREVENTS MY FALLING OVE R OTO MUCH!

LOL JILL

HUGS AND XXX TO U AND YOUR S

[Hidden in reply to jillannf6]

You are one sharp lady, Jill! Thanks for your input.

[easterncedar]

Psp is so variable, I think it's not possible to answer your question. And unfortunately having psp doesn't make a person immune from other diseases. My guy 's mental gears seem to be slipping more often these days. We hang onto the moments of clarity more fiercely. Hold on. Ec

[Auddonz in reply to easterncedar]

Ec,

I am so trying so hard to hold on. The Dtr changed his dosage of meds and I think it is making him worse. I stopped one pill and am waiting to hear from her tomorrow about she wants to do. He is having trouble moving tonight and most of the day. Each day is different. Thank you!

Auddonz (aka Audrey)

[easterncedar in reply to Auddonz]

We can only do our best, and then try to believe that the sun will come out again someday. Each day is different here, too. You know I sympathize and send hugs and love, ec

[Auddonz in reply to easterncedar]

ec,

Didn't give him the pill again this morning and he says he feels better. Doc never called. PT and aide came today so it was a busy day. PT couldn't believe how much weaker he has gotten since she last saw him about 4 weeks ago. Aide bathed D, washed clothes for me and vacuumed part of the house. I should feel rested but I am still exhausted. Aide will be coming 3 times a week for 2 hours each day. PT twice a week for about an hour. Hopefully things will get a little easier for a while.

Hugs and love back,

Auddonz (aka Audrey)

[Auddonz in reply to Auddonz]

3 days off the extra pill and he seems a little better. Dtr called and told me to put him back on what he was originally but I can't remember if it was 4 times a day, 4 hours apart. Feel like an idiot.

[jillannf6 in reply to easterncedar]

I AGREE EASTGERNCEDAR

IT IS DIFFICUTL TO DEAL WITH THIS PSP ALONE BUT AGE BRINGS IT S OWN PROBS DOESNT IT ??

LOL JILL

HUGS AND XXX XOT YOU AND MR EC

[easterncedar in reply to jillannf6]

Thanks, jill! Hugs back to you! Yes, getting older is a special challenge all its own, although, as they say, it beats the alternative.

We are having one of those gorgeous golden soft fall days that make you glad to be alive. So I am. And I'm grateful, as ever, for you and all the rest of the friends here.

Love, Easterncedar

[Auddonz in reply to easterncedar]

Easternceder,

It is a blessing to wake up every morning and definitely beats the alternative. My birthday this Friday and can't believe how old I am getting. D is 2 years ahead f me. With all the new meds I am hoping to live well in my 80's along with D

Love,

Auddonz

[cabbagecottage]

It isn't always to do with memory . My husband will call the remote the phone . It's like they go into their mind for the right word and come up with another , I have got use to now , usually manage to work it out for myself ,

[jzygirl]

One thing i have noticed with Brian is his short term memory is bad. Has had trouble with names for years.

And when Brian was last in hospital we did have a visit from the dementia care team. As they explained to us that people with neurological problems normally do have some form of dementia and was offered a place in the memory clinic. Did say we would think about it but we never did take them up on it.

So it seems to me that depending where the tangles tangle is what is affected first.

Janexx

[Malm1959]

in my understanding of PSP, they have water on the brain. I have seen an mri of the water on my mums brain. the location of the water affects the eyes. One of the earliest signs for my mom was that she could not figure out which grandkid was which. its not intentional, they just cant see certain things.

[abirke in reply to Malm1959]

Huh, I Have never found this in my readings....interesting

[ketchupman]

My wife is in her 7th year of the disease and her memory is fading quickly. At first I thought some of her issues were due to UTI's, which definitely contribute to some hallucinations. In the US, the neurologists will generally administer a "Mini Mental" test with each visit. The scale is 0 to 30. They ask the patient simple things like, what year is it, what day of the week is it, what is your home address. My wife gets some of these right. They will also tell her 3 words to try to remember: Apple, Penny, Table. They will then wait about a minute and ask her to tell them those 3 words. Sometimes she can, sometimes she can't. They will ask a few more questions and then re-ask her for the 3 words, about 5 minutes later. Rarely can she remember any of those words. Right now, my wife is probably scoring about a 12 on this test.

This is one of the hardest things with PSP. The physical component is pretty tough on caregivers, but when they start having mental problems, I feel it is even tougher.

God bless you guys.

Ketchupman

[LynnO in reply to ketchupman]

My husband has a great deal of trouble with his cognitive functions also.

That is what bothers him the most of all the symptoms. He also had the same trouble with the memory test, not being able to repeat a list a few minutes later. Or repeat a very short, but descriptive story. Couldn't remember any number that was include in the story at all, and only 1 or 2 other details was all he could come up with. It was sad to watch, he was so good with numbers and math, and now, nothing. His "clear" moments are getting fewer between his "foggy" moments. One of his neurologist wants to put him on medication to slow down his progressing cognitive issues, but my husband isn't into taking pills, and says if it isn't going to make him well, then he doesn't want to take it. The doc said it definitely wouldn't make him well and they weren't sure it would even keep it from getting worse. It would be a wait and see type of thing. So we won't be taking those meds I guess.

You are right, I thinks too, that the mental part is harder for me to deal with.

We can't share conversations and thoughts like we use too. It's hard on both of us. I find I'm talking to myself lately, but at least I agree with everything I say! : )

LynnO

[ketchupman in reply to LynnO]

Ditto! I almost feel like a recluse, since I don't talk at home much at all. If I try to get her into a conversation, she talks so soft and slurred speech ... and often what's she's saying doesn't make sense due to her dementia.

My wife is on Namenda XR and Aricept. After talking with the neurologist about other options, since these don't seem to do anything .. the only other drug that could benefit her would be Exelon. But I seriously doubt if it would do any good. I may still look more into it though.

Take care!

Ketchupman

[LynnO in reply to ketchupman]

Exelon is what our doc wants to put my husband on. He says it is the best he knows of with the least side effects. But still not a for sure thing. Plus it's not covered by our insurance which it would be about $500 a month. Well worth it if we knew it would work.

I've not told my husband about the price, and he still doesn't want to take it. I do want to give it a try, but it's up to him.

You take care too!!

LynnO

[ketchupman in reply to LynnO]

I think Exelon comes in a patch. I lead a support group here in Louisville, KY and one of my members has been on it. He gets his free from his neurologist (we use the same doctor). She also gives me the Namenda XR samples for free. So we never have to buy them. You just need to ask your doctor for the samples. Most likely they will provide. Or at least enough to determine if it works or not.

[LynnO in reply to ketchupman]

Thanks! We'll give that a try. I believe it comes in a patch and pill form. the dr. said the patch was easier to handle. I guess it goes into he body slower, steady rate compared to the pill.

[Auddonz in reply to ketchupman]

Ketchupman,

They both are hard. No way around it.

Auddonz

[AlmaJ67]

With Charles he has some things he never forgets and some he can never remember. I just asked him what two of his great grandkids names were and he didn't know. But I asked him were he worked before psp took over. And he was right. Also he has trouble remembering things he does everyday. Like how to dry his hands, how to brush his teeth. He can never remember that HE is not to get up without help. So it seems he can remember things from long ago, more than he can daily. He can not remember his address. He has been affected by psp we believe since before 2005. Was dx in 2015 ( pd in 2012).

All of this is so very hard for them and us.

Almaxxx

[abirke in reply to AlmaJ67]

Ketchupman,

Though some things B is failing to remember, he remembers numbers like credit cards, Soc. Sec., addresses etc., He is forgetting the name of characters in movies or what actor played what or what author wrote what.....This was something that he could do very well, to the amazement of all his family and friends!The other day he asked me where we were when I was driving. Luckily he simply had to be reminded and he may have not been able to see enough to recognize where we were more than memory issues. In fact ,if I were to take that memory test, I would flunk it faster and deeper than B would! and maybe even your Wife hahahah.....Infact I have to repeat Bruces birthdate so often that I have to now stop and think of my own! And it will soon be my deceased brother's birthday....the 5, 7 0r 11th . but I can remember all of the area codes of my childhood I've lived weird eh? DEMNTIA she says in a scary voice, "booahahaha"

AVB

[ketchupman in reply to abirke]

It's funny some of the things my wife will remember. While driving the other day, we had a 70's station on the radio and they were playing "Put Your Hand In The Hand" and to my amazement, she knew most of the words.

Ketchupman

[Hidden in reply to AlmaJ67]

My husband, Joe, 78, was diagnosed with CBGD last year at Cornell in NYC.

A month ago he awoke and did not know I was his wife. We have been married 54 years. These past weeks have been so difficult as we were told he would always know us. He sees different women and people in the house and does not feel he is home, where he has lived for 50 years. I am so broken hearted and I am praying this may be a delirium that will pass and bring him back to me.

He retired from being President of an Insurance Company in the city in 2011 and that was when I first noticed his walk was different, shuffling his feet. Doctors first said it was early alzheimers, but then we got the CBGD diagnosis.

He is incontinent, cannot dress himself, brush his teeth, hold utensils to eat with, and speaks lower now, trying to find words.

We tried the Exelon patch and it seemed to make him nasty so we stopped it. Did not feel it was worth the side effects. He was allergic to Aricept and never tried Namenda.

He takes 75mg. of Effexor, and just started Myrbetriq for urinary issues.

He is also on a mild blood pressure medicine, lisionpril and klorcon.

We do not know how long before other signs of the illness rear their ugly heads. He has difficulty getting up from the chair and sitting on the commode. He has had many falls, the last on Aug.25 and he broke his collar bone and a finger.

I hear about trials but I know so little. Any help from anywhere is greatly appreciated.

God Bless,

Rita

[Auddonz]

Rita, I wish I could tell you what to do but have never heard of it. Your Joe is the same age was my husband who was diagnosed with PSP, which I had never heard of either. He is on Sinemet. Whether it is helping I really don't know I do know it would break my heart if he didn't know me. Is he seeing a neurologist that you trust? Hope things improve. A few of his symtoms are similar to mine. BTW, we are married 56 years.

Best,

Auddonz