Diagnosis = FTD

[PJ]

Hi all, yesterday I was given a name for my diagnosis it’s Frontotemporal dementia. I’m 51 & had to give up work last July as I couldn’t seem to manage my job as a school secretary any longer.
Everything is making sense now I have a diagnosis especially behavioural
My question is are any of you at a similar early stage or if not do you know anyone who was diagnosed & how they are doing?
Lots of questions racing through my mind & my husbands.
Where to begin with moving forward & living!
Thank you all xx

 

[karaokePete]

At least you know now @PJ.
I've copied these links from another thread where a member copied a search of the forum for FTL in case anything in it may be useful to you.
Don't read any of this until you are ready as I know you had some doubts about reading too much.

https://forum.alzheimers.org.uk/search/771686/?q=fld&o=date
https://forum.alzheimers.org.uk/thr...rum-have-frontotemporal-lobe-dementia.108425/

This is the AS factsheet, in case you haven't seen it
https://www.alzheimers.org.uk/downl...factsheet_what_is_frontotemporal_dementia.pdf

 

[Philbo]

Hi all, yesterday I was given a name for my diagnosis it’s Frontotemporal dementia. I’m 51 & had to give up work last July as I couldn’t seem to manage my job as a school secretary any longer.
Everything is making sense now I have a diagnosis especially behavioural
My question is are any of you at a similar early stage or if not do you know anyone who was diagnosed & how they are doing?
Lots of questions racing through my mind & my husbands.
Where to begin with moving forward & living!
Thank you all xx

Hi PJ and really sorry you find yourself having to deal with this.

My wife was diagnosed with FTD 4 years ago (she's now just 67). They said she could also have a touch of Alzheimers but FTD is the primary diagnosis.

To be honest, I have found it difficult to compare how it affects her with others mentioned in this forum, as everyone seems to be affected in varying ways.

As many will advise you, the first thing to do is to sort out Lasting Powers of Attorney (LPA) and get them registered, even though you probably don't need to use them yet.

For my wife, it affected her ability to write pretty much at the earliest stage - which is when I first realised something was not quite right (she had problems signing her name). It also affected her speech, though I don't think that this is one of the more typical FTD traits (others will no doubt add their views).

After the initial "behavioural" changes, she at least seemed to loose a lot of the anxiety problems she'd suffered with most of our married life. In fact, she seems to be a happy little soul, though after 4 years, she's totally unaware that there are any problems.

As I said at the beginning, it's difficult to compare, or predict how things will progress. We were able to carry on as normal for the next year (we'd both already taken early retirement before any problems surfaced), although she did give up driving not long before our referral to the memory clinic (lost confidence plus kept getting confused). We managed a few more holidays abroad too, though the last couple of times, we took our 2 boys and their families, for added reassurance for me.

I will let others add their experiences, as it is a lot to take in but please feel free to ask any further questions (via the forum or messaging) as you process it all.

Very best wishes.
Phil

 

[Countryboy]

Hi all, yesterday I was given a name for my diagnosis it’s Frontotemporal dementia. I’m 51 & had to give up work last July as I couldn’t seem to manage my job as a school secretary any longer.
Everything is making sense now I have a diagnosis especially behavioural
My question is are any of you at a similar early stage or if not do you know anyone who was diagnosed & how they are doing?
Lots of questions racing through my mind & my husbands.
Where to begin with moving forward & living!
Thank you all xx

Hi PJ well you have already had replies form me ref: driving , I was diagnosed with Alzheimer’s age 57 in 1999 and FTD after having a PET scan in 2003 and a further SPECT scan in 2004 I continued working as a surveyor until my retirement aged 65 , November this year I had the diagnoses for 19years and I’m doing fine probably only a slight or minor change “but” that could be I’m 19 years older ok during that time I have had other medical problems but hay I drive I shoot I go on Holidays life is great for me and could be a lot worse at 75 I could be pushing up the daises if you think negatives it not going to go well So be positive at all times.

Always look on bright side of life

 

[PJ]

At least you know now @PJ.
I've copied these links from another thread where a member copied a search of the forum for FTL in case anything in it may be useful to you.
Don't read any of this until you are ready as I know you had some doubts about reading too much.

https://forum.alzheimers.org.uk/search/771686/?q=fld&o=date
https://forum.alzheimers.org.uk/thr...rum-have-frontotemporal-lobe-dementia.108425/

This is the AS factsheet, in case you haven't seen it
https://www.alzheimers.org.uk/downl...factsheet_what_is_frontotemporal_dementia.pdf

Thanks @karaokePete you are right it’s good to have an answer at last. Hope you’re well & thanks for the links

 

[PJ]

Hi PJ well you have already had replies form me ref: driving , I was diagnosed with Alzheimer’s age 57 in 1999 and FTD after having a PET scan in 2003 and a further SPECT scan in 2004 I continued working as a surveyor until my retirement aged 65 , November this year I had the diagnoses for 19years and I’m doing fine probably only a slight or minor change “but” that could be I’m 19 years older ok during that time I have had other medical problems but hay I drive I shoot I go on Holidays life is great for me and could be a lot worse at 75 I could be pushing up the daises if you think negatives it not going to go well So be positive at all times.

Always look on bright side of life

Hi @ Tony I thought of you today as Russell Crowe was auctioning off lots of his belongings & amongst it was a very nice motorbike
I will try my very best to always look on the bright side! Take care.

 

[PJ]

Hi PJ and really sorry you find yourself having to deal with this.

My wife was diagnosed with FTD 4 years ago (she's now just 67). They said she could also have a touch of Alzheimers but FTD is the primary diagnosis.

To be honest, I have found it difficult to compare how it affects her with others mentioned in this forum, as everyone seems to be affected in varying ways.

As many will advise you, the first thing to do is to sort out Lasting Powers of Attorney (LPA) and get them registered, even though you probably don't need to use them yet.

For my wife, it affected her ability to write pretty much at the earliest stage - which is when I first realised something was not quite right (she had problems signing her name). It also affected her speech, though I don't think that this is one of the more typical FTD traits (others will no doubt add their views).

After the initial "behavioural" changes, she at least seemed to loose a lot of the anxiety problems she'd suffered with most of our married life. In fact, she seems to be a happy little soul, though after 4 years, she's totally unaware that there are any problems.

As I said at the beginning, it's difficult to compare, or predict how things will progress. We were able to carry on as normal for the next year (we'd both already taken early retirement before any problems surfaced), although she did give up driving not long before our referral to the memory clinic (lost confidence plus kept getting confused). We managed a few more holidays abroad too, though the last couple of times, we took our 2 boys and their families, for added reassurance for me.

I will let others add their experiences, as it is a lot to take in but please feel free to ask any further questions (via the forum or messaging) as you process it all.

Very best wishes.
Phil

Hi @Philbo thank you very much for sharing your experience it’s such a help. I do understand this disease progresses at different speeds for everyone but it’s lovely to read ‘she’s a happy little soul’
When you say after 4 yrs she doesn’t think anything’s wrong is this denial or progression of the disease? Does your wife use this forum? Thank you

 

[Tricot]

@PJ Pleased to read you have been put in the picture now. Knowledge is power. I expect a lot of things will be falling into place now you have a firm diagnosis. You know where to turn for information and support. Stay positive. Thinking of you. x

 

[Philbo]

Hi @Philbo thank you very much for sharing your experience it’s such a help. I do understand this disease progresses at different speeds for everyone but it’s lovely to read ‘she’s a happy little soul’
When you say after 4 yrs she doesn’t think anything’s wrong is this denial or progression of the disease? Does your wife use this forum? Thank you

Hi

She seemed to deteriorate quite quickly at first, so although she initially struggled with accepting the news, this was followed by a decline in her cognitive abilities. The progression since, has been a lot slower than I anticipated, though I find that people who only see her occasionally, notice the changes more than those in more frequent contact.

She isn't capable of using a laptop etc but to be honest, she never was much of a fan before. She will pick up a magazine or paper, but as her attention span is very short, I doubt she is really taking in what she's looking at?

I have to say that in her case, I think she had progressed quite a way prior to and during the 9 months or so, that it took us to go through the GP/memory clinic process.

Best wishes.
Phil

 

[PJ]

Th

Hi

She seemed to deteriorate quite quickly at first, so although she initially struggled with accepting the news, this was followed by a decline in her cognitive abilities. The progression since, has been a lot slower than I anticipated, though I find that people who only see her occasionally, notice the changes more than those in more frequent contact.

She isn't capable of using a laptop etc but to be honest, she never was much of a fan before. She will pick up a magazine or paper, but as her attention span is very short, I doubt she is really taking in what she's looking at?

I have to say that in her case, I think she had progressed quite a way prior to and during the 9 months or so, that it took us to go through the GP/memory clinic process.

Best wishes.
Phil

Thanks @Philbo

 

[PJ]

Sorry that was a short reply I wanted to thank you it’s very helpful to hear how someone else is doing after diagnosis.
I am finding I feel quite anxious around large groups of people especially when everyone is trying to talk. But I’ve never been a fan of too much noise.

 

[PJ]

@PJ Pleased to read you have been put in the picture now. Knowledge is power. I expect a lot of things will be falling into place now you have a firm diagnosis. You know where to turn for information and support. Stay positive. Thinking of you. x

Hi @Tricot yes you are right. So much has fallen into place.
We are planning ahead & sorting lots of nice things to look foreward too. The next step is to look into any financial help we can get (never had to do this before so it’s like a minefield).
Hope you’re having a good Fri. It’s been sunny’ish here & we are on our way to Hereford to a b&b atm visiting a friend tomorrow xx

 

[Tricot]

Hi @Tricot yes you are right. So much has fallen into place.
We are planning ahead & sorting lots of nice things to look foreward too. The next step is to look into any financial help we can get (never had to do this before so it’s like a minefield).
Hope you’re having a good Fri. It’s been sunny’ish here & we are on our way to Hereford to a b&b atm visiting a friend tomorrow xx

Have a lovely weekend away @PJ I think a change of scene gives you a sense of perspective. We're planning a short break soon. Weather here lovely and sunny today 19 degrees. Hope it lasts. x

 

[PJ]

Today we booked our 1st ever cruise for April 2019
Since my diagnosis we just feel we need to plan ahead & give us things to look forward to. But after we booked it I started to think will I be the same this time next year? I know it sounds silly to think like this but I can’t help it. I was wondering if there was some insurance we could put in place just in case?
I am happy most of the time & am trying not to dwell on what might be as I know anything could happen to any of us.

 

[karaokePete]

Today we booked our 1st ever cruise for April 2019
Since my diagnosis we just feel we need to plan ahead & give us things to look forward to. But after we booked it I started to think will I be the same this time next year? I know it sounds silly to think like this but I can’t help it. I was wondering if there was some insurance we could put in place just in case?
I am happy most of the time & am trying not to dwell on what might be as I know anything could happen to any of us.

Don't let worry about the future stop you enjoying the present - you live in the present.
We have already booked our big holiday for next winter and were discussing the year after that this afternoon. When you reach that future date work around whatever situation you find yourself in at that time - that's what we'll be doing. After all you may still be the same - the progression of dementia isn't predictable!
In the meantime just do whatever is required to keep yourself as well as possible so that when the time comes you are best placed to enjoy your plans.
Remember PJ, the glass is half full.

 

[PJ]

@karaokePete yes life is for living I will try my very best to keep our glass half full (that’s why we’ve booked all inclusive )
Great to hear you’re both doing well & planning lots of lovely things x

 

[oldman1952]

Hi @Tricot yes you are right. So much has fallen into place.
We are planning ahead & sorting lots of nice things to look foreward too. The next step is to look into any financial help we can get (never had to do this before so it’s like a minefield).
Hope you’re having a good Fri. It’s been sunny’ish here & we are on our way to Hereford to a b&b atm visiting a friend tomorrow xx

Hi PJ, we have an organisation up here in Scotland called FIAT something called financial Inclusion Assistants Team. They do all of our paperwork and I have been awarded the higher rate of Attendance Allowance and I qualify for a blue badge to boot. So check it out with social services and Alzheimer association regarding a Link nurse. She is with me and the wife for about a year to help us overcome the diagnosis and to get up prepared for the future. I too have FTD with MND so I might not have as long as others to go before things really start to happen. I have got quite bad symptoms of MND and it is difficult to sit anywhere for too long before I start to go into spasm. The cramping pains are unbearable. so I am on a fair whack of analgesia. I am monitoring this thread so that either I can learn something new or maybe I can pass on something hat has helped me before. Best regards Oldman1952

 

[Tricot]

That's great news, PJ. Is it a river cruise or sea cruise? We've been talking about a river cruise for a long time. I like the way the places come to you, rather than you going to them and my husband could sit and watch the world go by. That's a lovely thing to look forward to. Do try to make the most of the present, though. Can't remember if I told you before about mindfulness? I'm the worst person for worrying about the future and regretting the past but this is so fruitless so I'm really trying hard to stay in the moment. There's a free online mindfulness course:
https://www.futurelearn.com/courses/mindfulness-wellbeing-performance

This is a lovely time of the year. Enjoy! xxx

 

[PJ]

Hi PJ, we have an organisation up here in Scotland called FIAT something called financial Inclusion Assistants Team. They do all of our paperwork and I have been awarded the higher rate of Attendance Allowance and I qualify for a blue badge to boot. So check it out with social services and Alzheimer association regarding a Link nurse. She is with me and the wife for about a year to help us overcome the diagnosis and to get up prepared for the future. I too have FTD with MND so I might not have as long as others to go before things really start to happen. I have got quite bad symptoms of MND and it is difficult to sit anywhere for too long before I start to go into spasm. The cramping pains are unbearable. so I am on a fair whack of analgesia. I am monitoring this thread so that either I can learn something new or maybe I can pass on something hat has helped me before. Best regards Oldman1952

Sounds like you have s great support network We are hopefully meeting with our local CAB this week to see what help is available. Thanks for your time x

 

[PJ]

That's great news, PJ. Is it a river cruise or sea cruise? We've been talking about a river cruise for a long time. I like the way the places come to you, rather than you going to them and my husband could sit and watch the world go by. That's a lovely thing to look forward to. Do try to make the most of the present, though. Can't remember if I told you before about mindfulness? I'm the worst person for worrying about the future and regretting the past but this is so fruitless so I'm really trying hard to stay in the moment. There's a free online mindfulness course:
https://www.futurelearn.com/courses/mindfulness-wellbeing-performance

This is a lovely time of the year. Enjoy! xxx

Hi Tricot good to hear from you. I hope you are well.
It’s a sea cruise we booked through Tui in our local high street. It’s a transatlantic cruise which starts in Jamaica & ends 18 day’s later in Spain!
I haven’t looked into Mindfulness but I will look via the link you’ve shared. Thanks again xx