Progression And Erratic Stuff

[BillBRNC]

I''m a Yank, age 65, with early onset, symptoms going back at least 6 years. I have noticed that sometimes things improve from time to time, but always end up back on the same downward progression. Sometimes memory is better, but mood/anxiety etc. are worse, and various other combinations. Is it unusual to have periods of days, weeks, sometimes as long as a month for certain areas to be better while others remain the same, or new ones pop up? I ask at the US forum, but never got a response from anyone who has a solid diagnosis about their personal experience. I also interested in whether the doctors in the UK agree with this type of erratic stuff. Thanks.

 

[CeliaThePoet]

Hello, and welcome to TP, Bill, from another American. I think we as carers have observed the type of up and down pattern you describe; I'm not sure anyone knows why it should be so. Having blood tests to make sure you have no vitamin deficiencies is probably a good idea (B and D loss can impact cognition.) I always wanted to point you to the "I have dementia" forum here in case you had not noted it:

http://forum.alzheimers.org.uk/forumdisplay.php?56-I-have-dementia

 

[BillBRNC]

Thanks for the reply. I've already been through all the testing and good/bad news phase. I posted here as I thought this was the early onset Alz board. Thanks.

 

[canary]

Hi Bill, Im a carer, rather than someone with dementia, so you may not count my reply, but what you describe is something that I have seen.
Dementia doesnt seem to be static, or simply a gradual steady decline, but rather a series of ups and downs (although, as you say, overall there is decline). There can be days or weeks when there seems to be an improvement in one aspect, before it again declines. Sometimes a type of behaviour can re-appear again for a time, even when you think they are past that stage.

Im hoping that some of the members who have dementia will see this and reply to you themselves

 

[BillBRNC]

Canary, thanks so much for your comment, because it shows what you a caregiver has seen, as opposed to what the person with Alz thinks. Not discounting what I think, but I realize that my thinking isn't always up to it former ability. I'm just confused and afraid, so I'm looking for whatever information I can find. Thanks again. Bill.

 

[aprilbday]

Hi Bill
I am also an early onset. I get my PET scan tomorrow. How are you feeling about having dementia? Were you surprised when you finally realized what was going on? Have you told others? Are you still working? Do you take Aircept yet?

April

 

[chick1962]

Hi Bill, Im a carer, rather than someone with dementia, so you may not count my reply, but what you describe is something that I have seen.
Dementia doesnt seem to be static, or simply a gradual steady decline, but rather a series of ups and downs (although, as you say, overall there is decline). There can be days or weeks when there seems to be an improvement in one aspect, before it again declines. Sometimes a type of behaviour can re-appear again for a time, even when you think they are past that stage.

Im hoping that some of the members who have dementia will see this and reply to you themselves

Hello, I am also a carer but my husband is very similar . Diagnosed 5.5 years ago . He has many really good days but also like you say not so good ones. It's up and down a lot but it depends if we have for example busy days , he needs to process it all and can seem slow and down . On simple days he seems fine . A lot of factors can affect Dementia , underlying infection, worry and what happens during the days. Keep on posting and let us know how you are getting on


Sent from my iPhone using Talking Point

 

[Izzy]

Good morning. I'm glad you found this forum - welcome.

I'm also a career. I agree with others that the progression of dementia seems very erratic. My husband is at quite an advanced stage now but still has periods that seem much better than others.

 

[BillBRNC]

Wow. I appreciate all the comments, which are very helpful. Here in the US, it is almost impossible to get a PET Scan. I can't figure out why, but the medical powers seem to prefer extensive neuro testing and clinic exams, blood tests, CT Scan and such. Oh, having early dementia sucks, period. I retired a few years ago due to another health issue, which has since stabilized, but I could not have worked anymore by about the same time due to my cognitive issues, which I thought at the time were related to my heart failure. Heart failure has been stable for several years, but the cognitive decline has reached alarming levels, so I finally got a complete work-up, which produced my diagnosis, which didn't really come as a surprise. My mother had early onset too. To satisfy me, I'm having a duplicate work-up at a major medical center about two hours away that has a specialized memory assessment department. My behavior, speech, anger, anxiety, confusion are bothering me much more than memory right now, although memory is really bad too. Driving isn't too good either, and it looks like that will be coming to an end sooner than I would like. I'm not overly worried, so long as I can prepare and do what I need to do to get things in order. Worrying didn't help with my heart issues, so I try not to worry. But I am very fearful, which is about the same. I'll be back here, as this board is much better than the US board. I found the UK board for cardiomyopathy was better here than in the US too. Oh, my nephew has live in the London for about 30 years now, and I doubt he will ever come back here to live. Good luck to us all.

 

[leicester61]

Wow. I appreciate all the comments, which are very helpful. Here in the US, it is almost impossible to get a PET Scan. I can't figure out why, but the medical powers seem to prefer extensive neuro testing and clinic exams, blood tests, CT Scan and such. Oh, having early dementia sucks, period. I retired a few years ago due to another health issue, which has since stabilized, but I could not have worked anymore by about the same time due to my cognitive issues, which I thought at the time were related to my heart failure. Heart failure has been stable for several years, but the cognitive decline has reached alarming levels, so I finally got a complete work-up, which produced my diagnosis, which didn't really come as a surprise. My mother had early onset too. To satisfy me, I'm having a duplicate work-up at a major medical center about two hours away that has a specialized memory assessment department. My behavior, speech, anger, anxiety, confusion are bothering me much more than memory right now, although memory is really bad too. Driving isn't too good either, and it looks like that will be coming to an end sooner than I would like. I'm not overly worried, so long as I can prepare and do what I need to do to get things in order. Worrying didn't help with my heart issues, so I try not to worry. But I am very fearful, which is about the same. I'll be back here, as this board is much better than the US board. I found the UK board for cardiomyopathy was better here than in the US too. Oh, my nephew has live in the London for about 30 years now, and I doubt he will ever come back here to live. Good luck to us all.

Hi
just wanted to say that my husband was diagnosed age 52, hes 56 this year. I have found this site invaluable not only with the support but with information and advice that i have asked for and recieved. More than anything it has been a brilliant place just to vent about the awfulness of az. So you really have come to a place thats worthwhile. Take care
Suz

 

[john51]

Hiya

I am 53, and was diagnosed with vascular dementia a couple of years ago. I have since been found to have Alzheimers with lewy bodies as well.

The diagnosis was made using neuro-prychological testing, ct and MRI scans. I have never had a PET scan.

When he gave me the vascular dementia diagnosis, the consultant told my wife and I that there would be worse days and better days.

Its a bit more variable than that so, and I have better hourse or even minutes and worse ones.

Keep on posting.

This site is is really good for support and advice

John

 

[BillBRNC]

No sooner thank I ask the question.... I went to my dental appointment this morning, only thing is they told me the appointment was in two weeks. I came home. The note on my desk that I looked at this morning had the correct date two weeks from now, and my calendar had the correct date. It just about killed me, as in almost to tears. I haven't cried since I was a small child, and I don't recall it. I didn't actually cry today, but I kept feeling like I would. It is just hard to keep coming fact to face with the reality of this. Last night, I read about when to stop driving. They gave a list of about 10 things to check if I had done them while driving. I had done all 10. They said even 1 would mean stop driving. I feel like I can drive just fine. Well, I'm glad to find a new place to vent. Thanks for putting up with it.

 

[Cat27]

No sooner thank I ask the question.... I went to my dental appointment this morning, only thing is they told me the appointment was in two weeks. I came home. The note on my desk that I looked at this morning had the correct date two weeks from now, and my calendar had the correct date. It just about killed me, as in almost to tears. I haven't cried since I was a small child, and I don't recall it. I didn't actually cry today, but I kept feeling like I would. It is just hard to keep coming fact to face with the reality of this. Last night, I read about when to stop driving. They gave a list of about 10 things to check if I had done them while driving. I had done all 10. They said even 1 would mean stop driving. I feel like I can drive just fine. Well, I'm glad to find a new place to vent. Thanks for putting up with it.

Vent away. That's what we are here for.
I'm sorry you've had such an upsetting day.