Newly Diagnosed and Young

Discussion in 'I have dementia' started by danonwheels, Apr 13, 2016.

  1. danonwheels

    danonwheels Registered User


    I have recently been diagnosed as having young onset Alzheimer's and am still in a bit of shock about it.

    I am 39, live on my own and work full time. I write as a hobby and up to recently could drive but since diagnosis my licence has been taken away.

    I also have MS and am a full-time wheelchair user, and I will be taking delivery of my first powerchair in the next 2 weeks or so as I no longer have the strength or stamina to self-propel.

    Reading stuff online about what to expect in the future makes grim reading and I feel like I need a damn good cry but can't because of my anti-depressant.

    Can anyone relate at all? Is this normal?

    Thanks - Dan
  2. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    Hi Dan and welcome to Talking Point - I hope you find it supportive.

    I'm sorry to read of your diagnosis of dementia on top of your other health issues. I think it's important to remember that no two cases of dementia are the same, and just because someone who has been diagnosed is experiencing a certain set of symptoms doesn't necessarily mean you will go on to develop those same symptoms.
  3. chick1962

    chick1962 Registered User

    Apr 3, 2014
    near Folkestone
    Hi Dan to be diagnosed is always a bit of a shock and a bit of a fright. My husband has early onset and we still live a good life 6 years later :) There are meds which can slow things down and there is lots of help and support on here. Keep on posting :)

    Sent from my iPhone using Talking Point
  4. danonwheels

    danonwheels Registered User

    Thank you. I think I've been looking for something reassuring but finding very little.

    I've been told about a medication called Aricept and that it might be able to help, at least in the short term. Not sure if I want any more meds as I already tgake a right cocktail morning and night but if it's worth it I might give it a try.

    I'm sure the shock will wear off. It did after my MS diagnosis eventually.

    Thanks again - Dan
  5. chick1962

    chick1962 Registered User

    Apr 3, 2014
    near Folkestone
    Aricept is to help slow things down Dan and lots take it . If you have any questions or need advice plz let us know . We are all here to help each other :)

    Sent from my iPhone using Talking Point
  6. marionq

    marionq Registered User

    Apr 24, 2013
    As I understand it your early onset is related to your MS whereas many of the stories on here will be about elderly people.

    I hope you will get plenty of encouragement from younger people who are coping like you with an unfair illness.

    Good wishes.
  7. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    North East England
    Hello, Dan, and welcome to the forum. I'm so sorry to hear about your diagnosis, but you have definitely come to the right place for lots of friendly support.

    Best wishes.
  8. Optomistic

    Optomistic Registered User

    Jul 24, 2014

    Hi Dan,

    My husband started Aricept 18 months ago and its certainly slowed things down we still enjoy lots of things together. The best thing is to take everyday as it comes there are lots of good days.

    He can now change a plug and do jobs in the house, plays on his X box and reads. We also go to bingo a few times a week he misses the odd number but not many.
  9. danonwheels

    danonwheels Registered User

    Thank you all. I think I'm going to have a look around the forums and see what this is all about.

    Thank you for the welcome and reassurances.

  10. Mal2

    Mal2 Registered User

    Oct 14, 2014
    #10 Mal2, Apr 14, 2016
    Last edited: Apr 14, 2016
    Hi there Dan.
    Sorry you have this diagnosis with your other problems.

    My husband was diagnosed 14 years ago and was placed on Aricept, one tablet at night. It certainly slowed the process of 'D'. From the diagnosis, we decided to take it a day at a time, and it was many years, before noticeable changes were happening.

    He also takes Memetine, ( taken with the Aricept ) prescribed 4 years ago, which does something different to Aricept, and, they can be taken together.

    We led a pretty 'normal' life, travelling to the States several times a year, visiting our Daughter and grandchildren for over 10 years. It has only been in the last 18/24 months that the stages of 'D' have changed.

    Keep posting, everyone here, will be happy to support you. All the best. M
  11. purplehead

    purplehead Registered User

    Jun 17, 2015
    N Ireland
    Hello danonwheels

    Hope you are well I am 51 years old woman with vascular dementia if u need a chat text me
  12. creativesarah

    creativesarah Registered User

    Hi Dan
    I have been diagnosed with Vascular dementia 6 years ago and although I have had to make many adjustments to my life I am living life the best I can
    Hope this inspires you a bit I have just joined a creative writing group and I am loving it
  13. aprilbday

    aprilbday Registered User

    Jan 27, 2016
    Washington, DC USA
    Hi Dan,
    Welcome. I can still cry. My anti-depressant was upped for my anxiety and pain management. I have spinal problems. Use crutches at work and a powerchair to get around in my neighborhood and to take the dogs for a walk.

    I still drive but after today wonder if I should. I saw 2 teens pointing and laughing at me. I did not know why. Saying I was too stupid to drive and laughing. I finally figured out why. I was stopped in up. I felt stupid once I realized it. Things like that make me ashamed and angry. Today was so bad, I also could not remember anyone's name.
  14. aprilbday

    aprilbday Registered User

    Jan 27, 2016
    Washington, DC USA
    Made no sense what I write:

    The teens were laughing because I was waiting for the light to change half way down the block instead of being at the place I should have been.
    I felt incredibly stupid but then I decided that it was my dementia and that made me feel better than being thought of as stupid. Why? I don't know.
    I don't like losing my mind!!!!!
    I don't like it!!!!!
  15. LoisJean

    LoisJean Registered User

    Hi, Dan and Greetings from Michigan, USA;

    I am an elder at 68 years old. I have severe emphysema. That was disability enough for me until I found I have dementia. But, when the body says, 'there's always room for more', it's not kidding! No matter what age a person is at.

    Here on TP you will find people who manage to live quite well in spite of their dementia. Many will have wonderful advise for you--just ask. We all ride the roller coaster of ups and downs. In my life, depression and dementia are lovers and often shack up together. I have become the reluctant land-lord for these two--I don't like them living rent free in my head, but I have found that trying to keep them out is a fight I can't win. Now instead of slipping in through the back door, they come barging in through the front!

    It's not easy, but I try to let each day come as it will. I stopped using anti-depressants because they created a worsening of my dementia symptoms--I now use prayer and meditation to help connect me to a better place in my brain.

    I'm very glad you're here, Dan. Please keep up with your posts. We are a wonderful bunch of people who tend to find great help and encouragement in one another. May I suggest you try blogging? We seem to have quite a few writers on this site who use that as a way to express themselves at depth.

    Peace and that in abundance to us all..LoisJean
  16. aprilbday

    aprilbday Registered User

    Jan 27, 2016
    Washington, DC USA
    Lois Jean
    I thank you for your post. The analogy of these free-loaders had me spell-bound. Magnificent poetry.
    I take cymbalta-it helps me to manage pain, but also helps my anxiety.
    I am grateful to you
  17. Owly

    Owly Registered User

    Jun 6, 2011
    #17 Owly, May 3, 2016
    Last edited: May 3, 2016
    Hi Dan, I'm sorry to hear about your diagnosis and resulting depression.

    Please consider the possibility that your diagnosis may be wrong, especially as you are still young. Yesterday I was looking at a book on Amazon called "Could it be B12?" and it is illuminating. People with B12 deficiency (through a poor diet, or unable to metabolise the B12 any more in their bodies) come in all ages. There have been misdiagnoses of MS and Alzheimer's, simply because of B12 deficiency. It seems that the blood tests often come out negative for deficiency because the 'normal' is set too low, but when people supplemented themselves with sublingual (below the tongue) tablets, they found that their symptoms vanished.

    If you put MS Alzheimer's B12 into a search engine, you will find many articles on the subject. We have also discussed B12 before on this forum, if you use the Search function at the top of this page.

    You may also like to check your antidepressant against the list on this page. The article describes how common medicines block the chemical acetylcholine, which is exactly what is the trouble in brains said to have Alzheimer's disease.

    Best of luck.
  18. danonwheels

    danonwheels Registered User

    Thanks for the info. I'll check that out. My anti-depressant is Fluoxetine and I'm on a number of other medications too, I know early on when I first mentioned memory problems to my GP he did look at my medications and possible side effects and reduced my Pregabalin dosage to see if that made any difference.
  19. anita1780

    anita1780 Registered User

    Sep 13, 2015
    Hi Danonwheels

    A big hug for you, check the B12 and send me a message if you need to talk to someone

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