Dementia

[somewhinUSA]

Recently my husband was diagnose with Frontal Temporal Demetia. I don't see a lot on this sort of Demetia. Also, unfortunately, my husband is very young at the age of 45.
We have teenagers and I haven't been able to explain fully to where they can understand and how to deal with their Dad that is so different now.

[quijibo]

i was diagnosed with frontal temporal dementia 3 days ago. i'm still coming to grips with this diagnosis. i am also young, 41 years and live alone, i need to make preparations now for the worst as there is nobody else to look after me once this disease has progressed beyond my ability to exert control.

it's difficult because i have always prided myself on my memory and brain power. my motor skills were never something to brag about so i wasn't too worried about that. i never thought someone in their forties could get this. my grandmother on my mother's side had Alzheimer's as she entered her 60's, and my grandmother on my father's side also, although she lived well into her 80's. it could have been dementia also. only an autopsy could have told.

i had a head injury about five years ago, which could also be the cause of this, i don't know...

but forty seems too young to lose your memories. and your ability to take care of yourself.

i'm tired of researching and finding there's no cure. i have been taking lion's mane mushroom for the past month as it has had some success in japanese studies in stimulating nerve growth, nothing proven of course. and there is a clinical trial going into its 3rd phase which i'll call on monday to see if i'm eligible. of course the drug's name escapes me...

researching this disease tells me that i should expect a lifespan of 4 to 10 years from diagnosis, what percentage of that constitutes a viable + vital quality of life is anyone's guess.

flowers for algernon anyone?

hopefully the next world will prove a better ride

"where is my mind?
out into the water,
see it swimming..."

-the pixies

[somewhinUSA]

I am so sorry to hear about your recent FTD diagnosis, I started to tear up, knowing that you are facing this alone. You sound so alert and so different from the stage that my husband is in. A year ago is when the test started and by then I knew something was seriously wrong. He had an idea but when I approached him he just agreed.
He was always very responsible with the home and money something he pride himself in that, now he whole livelyhood is going out to eat all the time. He has lost most of his sense of responsibilites, I have now have to take over the home, like repairs, chores, car, finances, etc., and I complain about it but after reading yours, my heart goes out to you.
He has had no head injuries like you did, well nothing that had to hospitalized him. He was deployed about 4 yrs ago, he's active miltary until medically retired. His parents don't have anykind of demetia but he's dad is one that seems to just sit and awaits his last days, but nothing has been diagnosed of any kind of dementia. His maternal aunt just passed away of Alzheimers.
How serious was your head injury?
What kind of plans are you making for yourself?
Like yourself, it took me a while to accept and was very angry and why now he was so young, a person this ages is just coming to their prime of thier life, so I totally feel like you do and was researching a bit.
If I may ask, what study are your entering? I turned a couple down one for it was a neuro-phsyc testing for 10 days, something I didn't think my husband would be able to handle, his language is always there and struggles to get the words out, he's social skills also suffers. The other study was at John Hopkins but it simply too expensive for us.
I am now awaiting for one near us, we'll see how it goes, I am not ready to give him up within the next 10 yrs which quality of life will be rob from him. How does one accept this.