Fronto-Temporal dementia

[EdselLopez]

Hello. I very scared and confused, awaiting diagnosis. Specialist says Fronto-Temporal Dementia (FTD) but symptoms are Lewy Body Dementia (LBD). I always have to make things complicated!!

I have got to (and gone past) the point where I can manage my affairs, so we've already got the Manx Enduring Power of Attorney (EPA) so my wife manages our affairs. I remain at home, my wife is my sole carer.

My condition is physically disabled by ME, taking a lot of painkillers to overcome head and muscular pain. Physically, limited in mobility. Having terrible Lewy Body nightmares, mentally very tired and confused through most of the day. No incontinence, have swallowing problems, digestive problems, glaucoma, tremors, speech issues.

So, any fellow LBD sufferers out there??

 

[Izzy]

Welcome to the forum @EdselLopez

I’m so sorry to read about your condition.

 

[Robynrose]

Hello. I very scared and confused, awaiting diagnosis. Specialist says Fronto-Temporal Dementia (FTD) but symptoms are Lewy Body Dementia (LBD). I always have to make things complicated!!

I have got to (and gone past) the point where I can manage my affairs, so we've already got the Manx Enduring Power of Attorney (EPA) so my wife manages our affairs. I remain at home, my wife is my sole carer.

My condition is physically disabled by ME, taking a lot of painkillers to overcome head and muscular pain. Physically, limited in mobility. Having terrible Lewy Body nightmares, mentally very tired and confused through most of the day. No incontinence, have swallowing problems, digestive problems, glaucoma, tremors, speech issues.

So, any fellow LBD sufferers out there??

 

[Casbow]

Hello. I very scared and confused, awaiting diagnosis. Specialist says Fronto-Temporal Dementia (FTD) but symptoms are Lewy Body Dementia (LBD). I always have to make things complicated!!

I have got to (and gone past) the point where I can manage my affairs, so we've already got the Manx Enduring Power of Attorney (EPA) so my wife manages our affairs. I remain at home, my wife is my sole carer.

My condition is physically disabled by ME, taking a lot of painkillers to overcome head and muscular pain. Physically, limited in mobility. Having terrible Lewy Body nightmares, mentally very tired and confused through most of the day. No incontinence, have swallowing problems, digestive problems, glaucoma, tremors, speech issues.

So, any fellow LBD sufferers out there??

So sorry Edsellopaz you sound as if you have more than a fair share of health problems. I have FTD and was diagnosed just after the pandemic broke out. Apart from my fear of my future, the biggest problem I have so far is my memory. But apparently that is not a very common symptom . I apparently said terrible things about members of my family in the car coming home at Christmas. The things I am supposed to have said are so awful and I have no recollection of saying any of it. But my son who was taking me home will not have nothing to do with me. I am horrified to think he believes I was of right mind. Since then there have been two other things that my other son and his wife have mentioned that I have no memory of. But they were not nasty things just stuff they helped me with. Dementia is very cruel but also doesn't always stick to the rules.!!

 

[To the taxi]

So sorry Edsellopaz you sound as if you have more than a fair share of health problems. I have FTD and was diagnosed just after the pandemic broke out. Apart from my fear of my future, the biggest problem I have so far is my memory. But apparently that is not a very common symptom . I apparently said terrible things about members of my family in the car coming home at Christmas. The things I am supposed to have said are so awful and I have no recollection of saying any of it. But my son who was taking me home will not have nothing to do with me. I am horrified to think he believes I was of right mind. Since then there have been two other things that my other son and his wife have mentioned that I have no memory of. But they were not nasty things just stuff they helped me with. Dementia is very cruel but also doesn't always stick to the rules.!!

from my own view of caring for my wife ask your son to read about this illness so he can understand that it can make you say thing good and bad but try as hard as it is you say apparently and supposed if you can not recall saying these things try and see it from his point as if must be hard for him also my wife has said things at times that know is just not the beautiful person she is this hurts us all. i feel for you

 

[Norrms]

Yes i also have lewy bodys, i was misdiagnosed with alzheimers at first and have documented it may times on here since , hope this helps xx

 

[Casbow]

from my own view of caring for my wife ask your son to read about this illness so he can understand that it can make you say thing good and bad but try as hard as it is you say apparently and supposed if you can not recall saying these things try and see it from his point as if must be hard for him also my wife has said things at times that know is just not the beautiful person she is this hurts us all. i feel for you

 

[Casbow]

I sent him the information but he still doesn't not believe it was my Dementia. Thankyou for your advice.

 

[To the taxi]

I sent him the information but he still doesn't not believe it was my Dementia. Thankyou for your advice.

i feel for you