Announcement

Collapse
No announcement yet.

Hello from a new member. My nickname, EvelynMW

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • VictoriaEdmunds
    replied
    Hello and welcome aboard!!!
    Last edited by VictoriaEdmunds; 12 May 2021, 18:03.

    Leave a comment:


  • Bowler
    replied
    Evelyn you are defo not being selfish. Everyone one of us here needs some sort of help and support one time or another. Just knowing you can come on here and chat be it serious stuff or lighthearted stuff is a comfort in its self. So chat away girl 😁

    Leave a comment:


  • Lynne K
    replied
    Please don’t feel selfish Evelyn. You did the right thing to find this forum with people like yourself and it’s the sensible thing to do to look after your own needs. We are here for each other and glad that you are prepared to be there for any of us. Love Lynne x
    Last edited by Lynne K; 10 May 2021, 16:26.

    Leave a comment:


  • EvelynMW
    replied
    It feels very selfish to want to find others like myself, so many others so afflicted have their life expenctancy cut so short. I can only wish that each person so afflicted can reach the mindset like my mother had, and Rob Burrow has. I am here ready to support anyone i can.in whatever way i can

    Leave a comment:


  • richard
    replied
    EvelynMW Welcome Evelyn, you are amongst many like minded and like you on a journey we don’t want, friends here.

    Richard

    Leave a comment:


  • EvelynMW
    replied
    Following advice from MaryC (can't recall her proper nickname) i am now taking only 1 pill a day. Once i feel totally like myself again, i will increase slowly up to 2 rilizole.

    Leave a comment:


  • EvelynMW
    replied
    I don't even know all the terms yet! Will have to look up a glossary.

    Leave a comment:


  • matthew55
    replied
    My dear departed mum gifted me with Bulbar Onset. Luckily I have dealt with countless other famillel issues so one more is nothing. 😉😀x

    Leave a comment:


  • EvelynMW
    replied
    When my mother died, i was told there was no chance of me getting it, she died in 1979 long before they found any familial links, so i was not expecting it. My sister is having to go through several hoops to get a genetic test. She is 72 and has had severe bipolar episodes: now under control thank goodness!. She is taking the test for the sake of her daughter, who had a baby about 9 months ago. We will all be hoping she did not inherit the faulty gene, but we just have to wait and see.
    Fortunately, i have never been a worrier, but my husband is, and he worries every time i go out without him. I wish i could help him, but he needs to help himself. We have not told my mother in law, or my father, it seems unnecessary at this stage.

    Leave a comment:


  • denise
    replied
    Hi Evelyn
    It's nice to meet you. My husband diagnosed 2 years ago. Hes having a bad time at the moment but we do our best to make things easier. Taking 1 day at a time seems to work for us.

    taking the medication is something we have all discussed over and over again. Sometimes hard to tell if it's the medication or the disease. My husband has decided to take 1 pill a day. No idea if this is the right choice but it's his.

    lovely people here to share everything with. We are all here to support each other as best we can.

    love and hugs Denise xxx

    Leave a comment:


  • Lynne K
    replied
    Welcome onboard Evelyn (same name as my mum). I’m the same age as you and I too have the C9ORF72 gene fault. My niece tested positive for it too. She’s have IVF (and some other procedure) so that they can eliminate the faulty gene in any foetus so her kids won’t carry the gene fault.

    I hope that you have all of the services that you need. Love Lynne x

    Leave a comment:


  • Barry52
    replied
    Hello and welcome from me Evelyn. Reading your other posts leads me to believe that you may have been expecting this bad news, however that doesn’t make the shock of a diagnosis any easier. I hope you can tolerate the side effects of riluzole.

    Best wishes.

    Leave a comment:


  • Gordan1111
    replied
    Hello Evelyn. Welcome our select club. x

    Leave a comment:


  • slp
    replied
    Hi Evelyn

    Welcome to the forum. Feel free to ask anything however trivial it may seem

    kind regards Sarah x xx

    Leave a comment:


  • Ellie
    replied
    Originally posted by EvelynMW View Post
    Recently was turned down for research as progressing too slowly
    Blimey, you just can't win, can you... 😯

    Leave a comment:

Working...
X