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Discussion in 'I have a partner with dementia' started by Heartbeat, Sep 27, 2015.
My Husband of 86 hasFTD and I would like to chat with likewise carers
Welcome to TP
Hello heartbeat and welcome to Talking Point
My husband has not yet been officially diagnosed with FTD, but the doctors have said that they think this is what he has. Are you having problems with your husband?
Thank you for your support. This is all new to me and I'm hoping this will give me support from others in the same position as me
fronto-temporal-dementia is usually diagnosed either with a PET scan or an Autopsy
PET (Positron Emission Tomography): A type of nuclear medicine scanning that involves capturing cross-sectional images of the brain, much like CT scanning. The images that are created are functional rather than the structural images of CT and MRI. Functional images capture how various parts of the brain are working, which makes it a diagnostic tool for neurodegenerative conditions such as FRONTO-TEMPORAL-DEMENTIA . Areas of the frontal or temporal lobes that are not as active as they should be may indicate FTD.
The PET scan involves the injection of a radioisotope, or tracer, into a hand or arm vein. The tracer emits positrons, which collide with electrons, or negatively charged particles, producing gamma rays which are similar to X-rays. These gamma rays are detected by a ring-shaped PET scanner and analyzed by a computer to form an image of brain metabolism. These tests are very expensive and not covered by all insurance policies. Check with your insurance provider to see what tests are covered or if pre-approval is needed.
SPECT (Single Photon Emission Computed Tomography): 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.
SPECT (Single Photon Emission Computed Tomography): PET (Positron Emission Tomography): 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.
Welcome Heartbeat, glad you have found this place. I'm sure you find lots of useful informatiom. My husband has frontotemporal brain damage and vascular dementia. He is badly affected as far as the executive function of the brain is concerned and his mobility is extremely poor. His comprehension is however pretty good and his character has not changed so far. Everyone is different.
That sounds very sad, Baxter. I hope your holiday goes well.
Signs and symptoms of Pick's disease or FTD
In contrast to Alzheimer's disease, where memory loss is the predominate early sign, the first symptoms of Pick's disease or FTD usually involve personality changes or a decline in basic functioning. Pick's disease can also occur at an earlier age than Alzheimer's disease. While cases have been reported in people as young as 20 years of age, symptoms typically first appear between the age of 40 and 60. The progression of symptoms in Pick's disease is fortunately slow, however symptoms do worsen over time as brain cells continue to degenerate. The following symptoms are typical of patients with Pick's disease. More severe symptoms appear in later stages of the illness.
Maybe I should add I have Fronto-temporal-dementia myself for 16 years now diagnosed age 57 still live a full active life Ok problem loss of short term memory and speech long term is very good and brain is active enough but as we hear many times we are all different and I can only comment on myself
As you say everyone is different. With my Husband it is speech and understanding, which is proving very difficult for both of us. At one time if I wrote things down he could read and understand but this is now getting more difficult. There is no conversation between us now and I feel that I have lost my Husband already. Heartbeat xx
I really feel for you Heartbeat, it is so sad for him and also very lonely for you.
Thank you esmeralda,it's not being able to share things with him that is so sad. We have been married 59 years and now all of a sudden I have to make all the decisions. No more little chats about what we should do or where should we go. Many people with FTD turn to music or art. With Ron it is art, he draws from morn till night. It is also an obsession .
Medication can be given for obsession but in Rons case it keeps him happy so this is a good thing. As you say, lonely for me but we have a dog and I walk her twice a day and meet other dog walkers who like to have a chat. I have met so many lovely people.
It has been lovely to talk to you, are you having similar problems? Heartbeat.
I can identify with a lot of what you say Heartbeat. It's good that you have the dog so you get out and meet other people. My husband sleeps an awful lot - nearly all day if I would let him. Other than that he watches TV or listens to the radio. I like that your husband spends his time drawing, it seems like a nice thing for him to be doing. Was he always artistic?
Reading through some the replies how people although they have Fronto-temporal-dementia can still relate and do certain thing they learnt many years ago mine is driving I'm gone back to riding a motorbike after 40+ years things you enjoy and get pleasure from you won't forget
A very warm welcome, as well, from me to TP. You'll get loads of help and support from people here, and many will identify with different things that you write about. It's good that you are still able to leave Ron and walk the dog, and have a chat with others.
I too found it was the little things, the sharing, that I missed, but how wonderful that you have had 59 years together. I wish you both well. xxx
No, he wasn't. This is the strangest thing. Apparently a University in California discovered
That some of the FTD patients were turning to music and art. In Rons case art. This is also quite obsessive. Medication can be given for obsessive disorders but in Rons case it gives him pleasure and keeps him happy. I am sure that if he did not have this pastime he too would sleep all day. In your case this must be so lonely for you esmarelda. Because of his lack of understanding, Ron no longer watches much TV, though I do tape animal programs for him. Things that he can watch without the need for speech.
When the family come he can show them his latest drawings and they can ooh and ah and interact with him which is great. Some friends have stopped coming, maybe they can't handle the change in him, have you found this?
Thank you for you replies esmarelda, I am greatful xxxxx
Thank you Scarlett for your warm wishes xxx
That is great Tony that you are riding a motorbike again. It gives you so much freedom, away from everyday cares and worries My husband still drives our car which our Doctor is quite happy about. When he is driving he is his old self again. Of course we drive in silence, I would not want to distract him but it gets him out.
It's good that your husband still drives and you can get out together Heartbeat. Very interesting about the music and drawing. I read once that Roald Dahl only developed his creative imagination and wrote his children's books after he suffered a serious head injury.
I think we have been fortunate in having good friends who understand about Nick's illness. Also because the changes have happened very gradually over a long period perhaps they have had time to adjust. I do make a big effort to maintain friendships - few people turn down an invitation to lunch! Some people have fallen away of course. Nice that you have family to visit, and they sound very understanding.
My OH also has been diagnosed with FTD but they also think there could be vascular dementia involved as well as he has had blood clots previously and things did get worse after he had a blood clot last year. Unfortunately he has deterioated a lot in the last year but I believe he has had it for at least 3 years. Behaviour issues were the first signs but as he is young we never guessed he had dementia, the memory and cognitive issues only really started just over a year ago. My OH had a love of art years ago which recently resurfaced again, until recently music was also something that helped him as well. My OH has been sectioned a couple of weeks back to be assessed and get medication adjusted, so we currently have some respite but it can be very difficult living with someone with FTD and I have often found myself walking on eggshells. We are at a 'wait and see what happens next stage' whilst they try new meds and different doses. Hopefully you will find Talking Point useful.
I do hope things soon get sorted for your Husband, that must have been so worrying for you. I can really relate to what you said about walking on eggshells. My Husband has been worse lately with his understanding. I write things down but now this is getting more difficult. So in the end I say "never mind" but he thinks I am losing patience with him, which I am not. At least not with him but with the whole awful situation. I think one has to be so very careful with body language and facial expressions. They pick up so quickly on these things.
The other awful thing about Dementia is that you can't say "get well soon" . That is what I find so difficult to cope with.