CBD

[Northstar1]

Hello all my husband seems to be struggling to remember things. He also seems to struggle to understand things I say. Had anyone else experienced this please

[Kevin_1]

Hello Northstar

Difficulty in finding words is very common. Sometimes it can look like a poor memory.

Your husband most likely will be able to tell you if he knows what he wants to say, but can't find the words.

All I can say about understanding is that my Liz is a long way down the road and she still has a fairly good memory and understanding.

The problem with PSP and CBD is that different people have different parts of the brain which are affected, to some degree. So it can present slightly differently.

Having said that I am not aware of lack of understanding and long term memory being to the fore as symptoms.

Maybe more will give you their experience.

Best to you

Kevin

[Northstar1 in reply to Kevin_1]

Thank you Kevin

[Dadshelper]

Dad had a great memory up to the end, especially long term. He did struggle a lot in the latter stage to communicate and when asked a question it would take a bit for him to respond.

Ron

[Northstar1 in reply to Dadshelper]

Hi Ron my husband keeps asking me about the alarm code our son is up before us amd turns it off ..he asks every day morning and night time.

When I ask him to do a simple task he will just forget...

[Dadshelper in reply to Northstar1]

The alarm sounds more like a "fixation" thing, dad had a few of those also. As for forgetting simple tasks he may just be choosing not to do them. I really believe that there is a great deal of apathy associated with these diseases.

Ron

[Northstar1 in reply to Dadshelper]

Thanks Ron x

[kenh1]

My wife very early on in the disease (prior to diagnosis) became very confused and disoriented. She couldn't find her way home from the hairdressers (only two blocks away. She got lost in our town centre and crashed the car. We went on a walking holiday in North Devon and she suffered severe vertigo on the Cliff paths at Lynton. Before she had the disease she would have climbed the Cliffs with ease. As others have indicated the disease manifests itself differently in different people. I.e. In the book 'The Salt path' a man with CBD walked those same cliffs with no signs of vertigo.

[Northstar1]

Thanks Kehn

[Kaka1234]

My husband has CBD, I hv to explain the simplest things to him and tell him most days the same things.

His word finding is a big struggle when he is struggling I mute the tv so their are no distractions and that does help with a bit of yes no guess work.

Hope this helps

TRACEY X

[Northstar1 in reply to Kaka1234]

Tracy you describe exactly the same issues. My husband symptoms began 2016 so three years. Generally he is settled and happy ....he knows the diagnosis though I expect he will not remember what it is called...he does not know the prognosis. Is your husband at a similar point xx

[Northstar1]

Maybe it's been longer. How old is your husband. My husband is 56 xx

[Kaka1234]

Yes he is we were diagnosed in 2016 too, he is mobile around the house but we hv just started to use the wheelchair out and about as he gets really tired and wobbly legs.

He still happy but does get frustrated with word finding. I reasure how well he's doing and how much I love him.

We hv spoke about CBD but like you he dosnt kno the prognosis. We decided to take one day at a time and manage the changes as the arise. But keep smiling

[Northstar1 in reply to Kaka1234]

Is your lovely husband a similar age.....it's so difficult .....you want someone who understands that you can connect with. I felt cast adrift after neurologist diagnosed David last April 18. Lots of support on here though xxx

[Kaka1234 in reply to Northstar1]

Yes My David is 59 on Friday I'm 48 we hv a daughter 15. I'm on Facebook Tracey ryan

[HilsandR]

Hi Northstar1,

There is not a one size fits all journey with these illnesses and as others have said, different symptoms can happen at different times, some people may not get a symptom at all that another may have endured for best part of the illness. I guess this is part of the reason why these illnesses often get misdiagnosed or indeed are so difficult to diagnose.

It took me some time to work out that during the early stages of PSP with my late husband, he was just unable to process what was being said or asked of him. Often, at dinner with friends, this once life and soul of the party man would sit in silence just staring at me, not engaging at all in the conversation. We'd move on to another topic and then out of the blue he would have his input to a previous conversation. It just took him a while to process what was being said, made all the more harder with background noise. Another early symptom, at least a year before diagnosis, was that he lost his ability of co-ordination. A once strong swimmer, I noticed he was struggling with his strokes and because of that he was reluctant to go into the water.

There's always someone on this site who will have a similar story so just keep posting with your doubts and concerns. We can't turn the clock back for our loved ones but getting as much info as possible through others stories can be really helpful.

Best wishes, Hils.

[Northstar1]

Him a thank you for your wise words and experiences xx

[Northstar1]

Hils x

[Cinnylou]

My CBD husband does the same. If I tell him something and he doesn’t seem to understand I will rephrase saying the same thing, but a different way. And there have been times where after I’ve said the same thing multiple times, I will turn his face to me and have him watch me say it. His focus isn’t there a lot of times and he’s zoned out, so I try to direct him to the idea that I’m trying to communicate something to him. That seems to help somewhat. But I’ve actually said to him once (not a proud moment) “Dude, It’s not like I’m speaking In French!” because he seemed clueless as to what I was saying.

He has speech/word finding issues as well. What really frustrates me is when he does decide to randomly speak—which isn’t often—I’m not prepared to hear him. And he’s always been soft spoken. So when I ask him to repeat what he said, he clams up.

He just turned 62. Diagnosed in 2017–but symptoms started with word finding issues as far back as 2014. Everything ramped up in 2016. But you can explain a lot of stuff away...chalk it up to being tired, or stressed. Until you can’t make excuses anymore. And he’s diagnosed with something you’ve never heard of with an outcome you were never expecting.

[Northstar1]

Thank you for your reply.. just read your posts. Have you made a decision about moving yet ?

Like you this is a difficult decision we are trying to make.

Also I agree you do feel you have woken up one morning and someone has tagged you and said 'your it'...

But I think about my poor husband and what he must face...

Xx

[Cinnylou in reply to Northstar1]

I’m staying put for now. Hubby gets confused if he’s out of his normal surroundings. I can’t do that to him. It’s sad to witness. We’d taken an overnight trip to St. Augustine awhile back so I could feel like I was vacationing. He was so rattled, he didn’t want to leave our hotel room. So we’d driven an hour to stay near the beach so he could watch Netflix on THEIR tv. Sheesh!

And after I’d decided to not move, I informed my family up north about it and they said they weren’t expecting me to move back anyway until after something happened to George. But my one sister brought up a valid point. The job I have here I’ve been at forever. They understand what’s going on with my husband. If I moved and had to start a new job, they probably wouldn’t appreciate that I was late for work because right before I walked out the door, my hubby decided to have a bowel movement and he, the floor and his clothing all had to be cleaned up. True story right there.