FTD in the US

Discussion in 'I have dementia' started by Intelnublett, Jun 7, 2019.

  1. Intelnublett

    Intelnublett New member

    Jun 7, 2019
    Hi! I just found this app and am glad to find somewhere to discuss my FTD since I have lost access to the internet due to my disease. I was initially diagnosed a few years ago and am starting to feel it is getting worse although non-MRI films don't necessarily show it. I look forward to taking part in the forum and am greatful this resourse is here since not much is available for FTD in the US.
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    hello @Intelnublett
    a warm welcome to DTP
    I'm glad you have found this supportive community ... now you have a whole host of members here to chat and share your experiences with ... you can say and ask whatever is on your mind and folk will understand
    so keep posting
  3. Richard and Fin

    Richard and Fin Registered User

    Jun 10, 2017
    Hi Intelnublett.... wished I knew your name...

    I had to come back after reading your post.

    However, I still get the email popping up, which I read, I then I read yours. This got my interest: ‘starting to feel it is getting worse.’

    I’ve been looking for others, with dementia, that know they have it and obviously you do!

    I have Neuralgic Amyotrophy, Epilepsy and now Dementia. However, I think this is normal…. my path to death. It may be different to others, but it is mine.

    Out of all the diagnosis, dementia was the one that got to me most! Since then I have become obsessed with finding out all I can about it and there are some amazing things I’ve discovered… Good and Bad!

    Number One. They do not know what causes it, they know the symptoms, and they do not have any clue of how to treat it!

    With this in mind… it is easy to see that anyone with such a diagnosis would give up; why bother, we know what is coming!

    But, I think this is the same for everyone… many people are terrified of the the thought of death, but as we all know, it is the one certainty of life.

    I’m not frighten of death at all, I’m terrified of dying! I want to go quick and quiet, without pain, or fear. I guess this is the same for everyone!?

    Life ends in one of three ways, our organs fail, our brain fails, both by old age, or illness, or by uncontrollable circumstance… like car accident.

    If we have no illnesses and no accident, then are our organs and/or brain would fail as they degenerate. I believe that it is the rate of degeneration and the time it takes that is a distinguishing factor between me and the person next door.

    Hopefully, we live to a ripe old age and then are bodies come to their end and we leave this mortal coil; quick, quiet and peaceful. Well we can dream!

    However, I think dementia is when these final moments don’t last for a relatively short time, but are excruciatingly extended over years and years.

    It is the reason for this happening that fascinates me and research strongly suggest that this is not inevitable. Although genetics does play a part, it is thought that lifestyle is a major factor.

    It is this I now believe. Just one example; Exercise is paramount is staving off mental and physical decline throughout life. I use a wheelchair, so I bought a special wheelchair that has push handles and now I go for miles. The first half hour is hard, but then I feel alive, I’m in my own little world, independent and free, but most of all feeling amazing and this is impacting on my life after exercising.

    For me the diagnoses of Dementia had defined me. Every day was a Dementia Day. I was down, with no future and so did nothing, just sat and waited, but not anymore.

    I have hope and a goal and it’s called life. I live it to the full and do whatever I can, whenever I can!

    The latest research, carried out at Oxford, has identified a way to determine a person has Dementia, before showing any signs… Why! Who would want to know!? The reason… because lifestyle can change the outcome. It is not a death sentence.

    It is a wake up call that everyone needs to hear.

    So when the doctor says, ‘It’s dementia,’ it does not mean it’s the end… It means live!

    Don’t wait till too many brain cells have died and you have gone too far into the darkness to ever come back.

    Do spend time here... there are some nice people here, but don't make it your life.

    Get out, enjoy life and Live! Live! Live!

    PS. Sorry…. I do tend to go on a bit!
  4. Intelnublett

    Intelnublett New member

    Jun 7, 2019
    My log in name is intelnublett for security but my name is Jason. My official FTD diagnosis came in the 2014--2015 timeframe but atrophy was visible and symptoms started at least as early as 2012. Most of my family has lived well into their 90s so the cause of my FTD is most likely not genetics so we have been looking at other pausable causes. I had radiation exposure on nuclear submarines in the early 90s which likely also caused several benign tumors on my spine and ribs and my neurologist thinks this may have caused the FTD too.
    Has anyone with FTD had radiation exposure too?
  5. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Hi Jason,
    Ive not heard of radiation exposure causing FTD - not that Im saying it doesnt happen.
    Most FTD is what they call "sporadic" - which basically means that they dont know why it happens.
  6. Intelnublett

    Intelnublett New member

    Jun 7, 2019
    Thanks! AFTD is indeed a tremendous resourse here and both my wife and I are big fans. The problem for me is that I have lost access to the internet due to my spending issues so I don't have ready access to their resources. I am finding that this site is a great way to learn and converse with other FTD patients and carerers without having to go online! I really appreciate that!!!!
  7. PJ

    PJ Registered User

    Jan 26, 2017
    Hi @Intelnublett
    I’ve not been on talking point for a little while & was just catching up on posts.
    I have FTD too I was diagnosed last year at 51.
    How are you doing? Do you find you are often in denial?
    We went for a health check re my diagnosis at the doctors this morning & they have us information on the future & care homes. I found this all a bit much if I’m honest. Hopefully that’s a long way off for all of us!

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