Diagnosis = FTD
- Thread starter PJ
- Start date
Hi Pete hope you & your wife are well.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.
I was wondering if you knew of a decent travel insurance? We go on holiday in 2wks & we need to sort it.
We’ve informed our car ins today as advised by my Dementia Support Worker who I met today with my eldest son
Hi PJ, things have been tough at times lately but we see the GP tomorrow for a meds review so in my glass half full way I'm looking forward to an improvement. I hope you and your husband are managing to adjust and enjoy life as well as you both can.
We go on one long stay holiday a year and the only insurance we found that gave full cover for Alzheimer's was Staysure. They were expensive and I don't know how good they are as we haven't had to claim in the 3 years we've used them so I can't give a personal endorsement. However, they are very good to deal with. There may be others who will give cover for short term holidays and the price will be cheaper if existing medical conditions are excluded - but that's a risk I myself wouldn't take. Anyways, I hope you enjoy the holiday.
I hope tomorrow’s review is helpful for you both. Thank you for the info we will look into it. Catch up soon I hope
Now that's a tale. My OH had her anti anxiety meds doubled in dosage so fingers crossed there. Thanks for asking PJ.
At the end of the consultation I just mentioned to the GP that a couple of days prior I had started to see what looked like a lightening storm in my left eye. The GP didn't even look at it and just told me to report to the Eye surgery unit of a Belfast hospital immediately. The hospital consultant examined my eye, told me I had a torn retina and that it would need to be welded with a laser. I asked when and he just said "now", took me into a different room and got on with it.
I had thought that my symptoms were just a result of recent sleep deprivation due to my OH's nocturnal agitation so I wasn't expecting any of that! Of course, my OH didn't remember all that on Thursday morning so it's business as usual. Just as well I'm not the type to expect sympathy!
I'm not allowed to read books, take strenuous exercise or do much computer work for a week. All three of those things are what I do in my spare time every day so it's going to be a long week.
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Oh no I’ve never heard of that before it sounds painful!! I’m sorry you’ve been through it atm & hope the week is bearable without your fav pastimesNow that's a tale. My OH had her anti anxiety meds doubled in dosage so fingers crossed there. Thanks for asking PJ.
At the end of the consultation I just mentioned to the GP that a couple of days prior I had started to see what looked like a lightening storm in my left eye. The GP didn't even look at it and just told me to report to the Eye surgery unit of a Belfast hospital immediately. The hospital consultant examined my eye, told me I had a torn retina and that it would need to be welded with a laser. I asked when and he just said "now", took me into a different room and got on with it.
I had thought that my symptoms were just a result of recent sleep deprivation due to my OH's nocturnal agitation so I wasn't expecting any of that! Of course, my OH didn't remember all that on Thursday morning so it's business as usual. Just as well I'm not the type to expect sympathy!
I'm not allowed to read books, take strenuous exercise or do much computer work for a week. All three of those thing are what I do in my spare time every day so it's going to be a long week.
Sending sympathy & get well wishes your way! Take care,
Hi good to hear from you but not good you’re still having problems
Are you any closer to having an answer?
Hi PJ, No closer. The next step will be the appointment early July at the regional memory centre where I went last spring. He will decide about the lumbar puncture and PET scan. Don't yet know whether to go through with that if it's offered. My husband is 82 and really not well. I don't want him to be upset and worried by a dementia diagnosis and what will happen to me. Depression is still my biggest problem. Started another new anti-depressant last night.Hi good to hear from you but not good you’re still having problems
Are you any closer to having an answer?
I can understand your concerns & it’s a personal choice.
We found it easier knowing as so much finally made sense & now we can put things in place.
I’m sorry your husband is unwell
this can’t be helping matters. I hope the new medication helps.Hi PJ and all. Just wanted to say hello, I've been reading this thread as my husband has just had the FLD diagnosis and I felt a little like I was snooping on you if I didn't say hello.
We knew he had some sort of dementia but today we were finally told which type and they've offered anti depression medication to help with his apathy! Not sure if this will help or not?
We just want to keep life together as active and happy as possible for as long as possible!
I think knowing what we are dealing with will help me but he honestly seems absolutely unaffected by it all! I suppose this is part of the condition.
We knew he had some sort of dementia but today we were finally told which type and they've offered anti depression medication to help with his apathy! Not sure if this will help or not?
We just want to keep life together as active and happy as possible for as long as possible!
I think knowing what we are dealing with will help me but he honestly seems absolutely unaffected by it all! I suppose this is part of the condition.
Hi @Laura40
I’m so sorry to hear your husband also has FTD. Do you mind if I ask how old he is & what led to his diagnosis?
I was already on anti depressants (have been for 15yrs) so was given a different tablet to hopefully curb the spontaneous behaviour
You sound like you both want the best future possible which is an added bonus.
I hope you both have plenty of support.
We’ve been lucky enough to not only meet my dementia support worker but also attend a group called Active8 every other Weds which is for early onset.
Hi PJ he is 60. The anti depressants I believe are to help with the apathy and behaviour changes. He is very happy so it's definitely not for that, but he's happy doing nothing! Or lots... depending on whether he's given suggestions...
It's going to be a bit tricky for us doing group things together for a while as I work full time and really can't afford to stop work having a teenager to look after and another one at uni. I'm only 45 so also would be really hard for me to just stop working as I love my job.
The diagnosis has come from over a year of appointments which have included all the normal blood tests, memory tests and MRIs.
He passes all the memory tests with flying colours but shows clear language issues. As somebody who is / was very much an academic the memory questions and his success with them made it a bit tricky at first for the GP to take me seriously. The concerns for me where his apathy ;which was a real personality change, his navigation skills just disappeared and his driving was scary! As well as all of this were lots of little things like just not noticing his messy he was when eating, etc and something I find really hard is his lack of feelings. He's always really happy to see me when I get home from work but is very self centered, he seems to have lost his empathy for others around him but it's very subtle. If I have a bad day at work he just can't tell anymore and that's not like him, he is very caring.
He's also mixing things up and forgetting the consultant explained this is around executive thinking, so like cooking meals, he always cooked but now he struggles and every task takes him three times as long to complete.
i could go on and on about the different symptoms, there seem to be many overlapping with different types of dementia however the consultant looked at other variables such as familial history and he has close relatives that have also had dementia at an early age which seemed to point to this diagnosis.
I think the biggest definite for me is his reaction to the diagnosis, unlike yourself he really doesn't seem bothered at all. It's completely bizarre, coming out of the consultation he laughed and grinned at me saying "you were right weren't you! " and that was the last of it, his next conversation was around lunch! He just moves on from it all without a care in the world...
It's going to be a bit tricky for us doing group things together for a while as I work full time and really can't afford to stop work having a teenager to look after and another one at uni. I'm only 45 so also would be really hard for me to just stop working as I love my job.
The diagnosis has come from over a year of appointments which have included all the normal blood tests, memory tests and MRIs.
He passes all the memory tests with flying colours but shows clear language issues. As somebody who is / was very much an academic the memory questions and his success with them made it a bit tricky at first for the GP to take me seriously. The concerns for me where his apathy ;which was a real personality change, his navigation skills just disappeared and his driving was scary! As well as all of this were lots of little things like just not noticing his messy he was when eating, etc and something I find really hard is his lack of feelings. He's always really happy to see me when I get home from work but is very self centered, he seems to have lost his empathy for others around him but it's very subtle. If I have a bad day at work he just can't tell anymore and that's not like him, he is very caring.
He's also mixing things up and forgetting the consultant explained this is around executive thinking, so like cooking meals, he always cooked but now he struggles and every task takes him three times as long to complete.
i could go on and on about the different symptoms, there seem to be many overlapping with different types of dementia however the consultant looked at other variables such as familial history and he has close relatives that have also had dementia at an early age which seemed to point to this diagnosis.
I think the biggest definite for me is his reaction to the diagnosis, unlike yourself he really doesn't seem bothered at all. It's completely bizarre, coming out of the consultation he laughed and grinned at me saying "you were right weren't you! " and that was the last of it, his next conversation was around lunch! He just moves on from it all without a care in the world...
Hi @Laura40
I thought things were hard enough for us with me having to give up work but we haven’t got anyone depending on us financially which is a massive bonus!
Our youngest son & his girlfriend still live with us as they’re saving for a mortgage but they both work & contribute towards the household.
I can completely understand you would not want to give up a job you love but you will no doubt find you will need time off to support each other through each stage.
My husband still works but thankfully his boss has agreed he can take time when needed & Mike found the support group to be invaluable. In fact he’s gone from being at rock bottom where he was worried, not sleeping & dreading what lay ahead to having hope after meeting & speaking to the partners of others with FTD. So the support is as much for the sufferer as the partner
I do feel for you especially with family still needing your emotional & financial support.
So am I right in thinking he never had a SPECT scan?
There is so much of what you describe I see in myself & however much I try to fight this disease some days it defeats me
I thought things were hard enough for us with me having to give up work but we haven’t got anyone depending on us financially which is a massive bonus!
Our youngest son & his girlfriend still live with us as they’re saving for a mortgage but they both work & contribute towards the household.
I can completely understand you would not want to give up a job you love but you will no doubt find you will need time off to support each other through each stage.
My husband still works but thankfully his boss has agreed he can take time when needed & Mike found the support group to be invaluable. In fact he’s gone from being at rock bottom where he was worried, not sleeping & dreading what lay ahead to having hope after meeting & speaking to the partners of others with FTD. So the support is as much for the sufferer as the partner
I do feel for you especially with family still needing your emotional & financial support.
So am I right in thinking he never had a SPECT scan?
There is so much of what you describe I see in myself & however much I try to fight this disease some days it defeats me
Hi Laura40 just read your comments on your husbands diagnoses, it sounds very similar to my situation way back now in 1999 I was first diagnosed with Alzheimer’s after the various mental tests blood test ect I also had an MRI scan which was negative and continued regular visits to see the Consultant Psychiatrist thing probably change for me when the Consultant move abroad and I was assigned much younger Psychiatrist we got into several arguments with me telling No way did I have Dementia in 2003 I was sent to the next County for a PET Scan (Positron Emission Tomography): and a second SPECT scan (Single Photon Emission Computed Tomography): in 2004 both are a type of nuclear medicine scanning that is very similar to PET. SPECT measures blood flow and activity levels in the brain, which make it a diagnostic tool for identifying behavioral and cognitive problems in persons with neurodegenerative conditions such as FTD. my Psychiatrist had won the argument No if’s or Buts I do have fronto-temporal-dementia Ok I now have the diagnoses I’m 57 years old do I roll over and fell sorry for myself or say sod it (well that’s being polite ) and carry on regardless I did the latter continued working up to my retirement age 65 I will be 75 next week never felt better ok during my 19 years with the old Fronto-temporal-dementia I had two heart attacks now I have type 2 diabetes but still living well still above ground so live for today because you will never see tomorrow because when you think its tomorrow its today again
Just need to add anti depressants yep same with me obviously when first told your have dementia your going to have a bit of anxiety was given the anti depressant tablets , when I arrived home with them my wife your Not taking those things and flushed then down the toilet job done
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Hi PJ and Country Boy,
I feel really positive when reading both of your posts so thank you.
No he's not had a SPECT scan just the MRI I think we are at early stages with the health service.
We have a nurse visiting later on this week so can ask more questions. Living for today, definitely a mantra worth having.
I feel really positive when reading both of your posts so thank you.
No he's not had a SPECT scan just the MRI I think we are at early stages with the health service.
We have a nurse visiting later on this week so can ask more questions. Living for today, definitely a mantra worth having.
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