Frontotemporal dementia,-Potential therapy for second most common form of dementia

[jimbo 111]

Potential therapy for second most common form of dementia
Drugs that boost the function of a specific type of neurotransmitter receptor may provide benefit to patients with the second most common type of dementia, according to research by scientists at the University of Alabama at Birmingham published today in the Journal of Neuroscience.

Frontotemporal dementia, known as FTD, is a devastating disease in which patients have rapid and dramatic changes in behavior, personality and social skills. The age of onset for FTD is relatively young, usually striking patients in their mid- to late 50s. The prognosis is grim; patients quickly deteriorate and usually die within 10 years after onset. Currently, there is no effective treatment for FTD.

Read more
http://www.sciencedaily.com/releases/2014/12/141203185128.htm

 

[PJ]

I have just come across this post
It really gives a terrible prognosis for FTD?

 

[canary]

Hello @PJ

This post (and artical) is 4 years old. I know that it used to be said that things deteriorate very quickly with FTD and you will still find articals that say this, but they are now beginning to think that it doesnt always follow this course. My OH certainly isnt deteriorating that quickly and there are several members on here who have FTD and are still posting many years after diagnosis.

We none of us know how long we have got - whether we have dementia or not, so the best thing is to get wills and POA sorted, then try and live each day as it comes, enjoy what we have and not look too far into the future

 

[Countryboy]

I just read the “University of Alabama at Birmingham December 3, 2014 paper” all I can say I’m delighted I didn’t read all this in 2003 it’s a bit doom and gloomy , I was first diagnosed with Alzheimer’s in 1999 aged 57 after various visits to Mental Health Clinic and several heated discussions I was sent for a PET brain scan in 2003 diagnoses from PET scan FTD the scan a second SPECT scan 2004 confirmed the diagnosis, so assuming it was FTD from the start come November I will have been diagnosed 19 years and possibly had FTD for a few years prior to that undiagnosed I continued work for the first 8 years unit age 65 only retiring then because it was the Company Policy , after my retirement I became a member of the Leadership Group in Cornwall run by the Alzheimer’s Society for 4 years of the 8 Group Member 5 were diagnosed with FTD ( I agree we maybe all different) but all drove themselves to the meetings all had a good quality of life with only a few minor issues , just one point when you fill out any travel insurance tell me if you can find the Medical Condition FTD believe me you wont and if you phone any Insurance Company they have No idea about FTD ok this is my personal view and I do have the Diagnoses of FTD and I'm not Worried one iota

 

[Countryboy]

Hello @PJ

This post (and artical) is 4 years old. I know that it used to be said that things deteriorate very quickly with FTD and you will still find articals that say this, but they are now beginning to think that it doesnt always follow this course. My OH certainly isnt deteriorating that quickly and there are several members on here who have FTD and are still posting many years after diagnosis.

We none of us know how long we have got - whether we have dementia or not, so the best thing is to get wills and POA sorted, then try and live each day as it comes, enjoy what we have and not look too far into the future

Hi canary sorry you were posting whilst I was typing it takes me a while but I agree with you comments its not one diagnose fits all Unfortunately that what the bureaucrats think take the worst cases and treats us all the same well thats if we let them get away with it

 

[canary]

Hello @Countryboy Lovely to hear your story about things you have done, even after diagnosis.

 

[Countryboy]

Reference to my previous reply just well I just Tried getting Insurance from a well-advertised Travel Insurance company who in there advert say sure we will ( well they don’t understand FTD that's for Sure )

Please enter the medical condition here:
fronto-temporal-dementia SEARCH
No match has been found. Please check the spelling and retry. Remember as few as three letters from any part of the condition name can be entered.

My Second search
FTD SEARCH
No match has been found. Please check the spelling and retry. Remember as few as three letters from any part of the condition name can be entered.

like I said they have no idea about FTD

 

[canary]

like I said they have no idea about FTD

Yes, there are lots of people like that - even some doctors!

 

[Countryboy]

Hello @Countryboy Lovely to hear your story about things you have done, even after diagnosis.

Hi canary good news you OH is coping with his FTD that's good news for anyone with a recent diagnoses to know unfortunately not everyone can cope but that's life

 

[Countryboy]

Yes, there are lots of people like that - even some doctors!

don't I know that in the early days 2000 to 2008 I was in more battles than field marshal Montgomery but i survived and mellowed now

 

[PJ]

Great to read such positive & promising comments

 

[PJ]

I just read the “University of Alabama at Birmingham December 3, 2014 paper” all I can say I’m delighted I didn’t read all this in 2003 it’s a bit doom and gloomy , I was first diagnosed with Alzheimer’s in 1999 aged 57 after various visits to Mental Health Clinic and several heated discussions I was sent for a PET brain scan in 2003 diagnoses from PET scan FTD the scan a second SPECT scan 2004 confirmed the diagnosis, so assuming it was FTD from the start come November I will have been diagnosed 19 years and possibly had FTD for a few years prior to that undiagnosed I continued work for the first 8 years unit age 65 only retiring then because it was the Company Policy , after my retirement I became a member of the Leadership Group in Cornwall run by the Alzheimer’s Society for 4 years of the 8 Group Member 5 were diagnosed with FTD ( I agree we maybe all different) but all drove themselves to the meetings all had a good quality of life with only a few minor issues , just one point when you fill out any travel insurance tell me if you can find the Medical Condition FTD believe me you wont and if you phone any Insurance Company they have No idea about FTD ok this is my personal view and I do have the Diagnoses of FTD and I'm not Worried one iota

Hi thank you for sharing your journey since diagnosis it’s great to hear!
Do you mind me asking what sort of things have deteriorated or have you stayed the same since diagnosed?
Do you take any medication to help?
Thanks for your help!

 

[PJ]

Hello @PJ

This post (and artical) is 4 years old. I know that it used to be said that things deteriorate very quickly with FTD and you will still find articals that say this, but they are now beginning to think that it doesnt always follow this course. My OH certainly isnt deteriorating that quickly and there are several members on here who have FTD and are still posting many years after diagnosis.

We none of us know how long we have got - whether we have dementia or not, so the best thing is to get wills and POA sorted, then try and live each day as it comes, enjoy what we have and not look too far into the future

Thanks @canary I think my mind has been working overtime but I guess it’s still early days & in time we will get used to my diagnosis & learn to live with it
I think once we get finances in place we won’t be stressing so much.
Unfortunately I couldn’t do my job anymore as school secretary & lead 1st aided & now I don’t know what to do?
Sorry I sound like a right old grump ☹️

 

[Countryboy]

Hi thank you for sharing your journey since diagnosis it’s great to hear!
Do you mind me asking what sort of things have deteriorated or have you stayed the same since diagnosed?
Do you take any medication to help?
Thanks for your help!

Hi PJ Reference to your question above, your probably asking the wrong person my wife's version may differ from mine . but me personally I don’t think I have deteriorated other than I’m 19 years older and have other medical issues now, but I have them under control and coping well, yes I take Aricept for my dementia been taking that now also for 19 years so hopefully that works , I also take medication for other medical issues, my greatest challenge years ago was when got frustrated mainly because I couldn’t transfer my thoughts or what I wanted to say into speech somehow it gets lost before I can say it verbally hence I start using bad language however if it does manage to get through it is exactly what I’m thinking nothing gets watered down to be political correct that can be a problem, my Consultant once told me many years ago it happens with dementia ( his words when your asked something you don’t think your like a young child you just blurt it out ) however I have been retired now 10 years so the frustration with bureaucrats has eased off so don’t get so many situations now where the frustration kicks in ,, fortunately PJ I can use the computer which allows me to put my thoughts into words all be I make quite a few mistakes now but hay can’t have everything

 

[PJ]

Hi PJ Reference to your question above, your probably asking the wrong person my wife's version may differ from mine . but me personally I don’t think I have deteriorated other than I’m 19 years older and have other medical issues now, but I have them under control and coping well, yes I take Aricept for my dementia been taking that now also for 19 years so hopefully that works , I also take medication for other medical issues, my greatest challenge years ago was when got frustrated mainly because I couldn’t transfer my thoughts or what I wanted to say into speech somehow it gets lost before I can say it verbally hence I start using bad language however if it does manage to get through it is exactly what I’m thinking nothing gets watered down to be political correct that can be a problem, my Consultant once told me many years ago it happens with dementia ( his words when your asked something you don’t think your like a young child you just blurt it out ) however I have been retired now 10 years so the frustration with bureaucrats has eased off so don’t get so many situations now where the frustration kicks in ,, fortunately PJ I can use the computer which allows me to put my thoughts into words all be I make quite a few mistakes now but hay can’t have everything

I totally understand where you’re coming from I feel far less stressed now I’m not working as it doesn’t matter anywhere near as much if I get something wrong or feel confused.
You have a great outlook I hope I can be the same x