Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 28

Thread: Hi everyone, from a recently diagnosed 29 year old female!

  1. #11
    Forum Member JAY TEE's Avatar
    Join Date
    Apr 2014
    Location
    Halesowen, West Midlands
    Posts
    178
    Gemmapob sorry to hear someone so young has got this MND. It is one of those things you never know what is around the corner. I was 65 when formally diagnosed but kept my self fit by walking a lot and swimming twice a week. If still walking suggest walking frame with the wheels these handy early on. I now use zimmer in the house then wheelchair. My speech not good but did not bank it. I use Speak It of the Internet on my iPhone and iPad. You will get all the information for lots of things off this forum.
    Hope everything ok
    Jay Tee

  2. #12
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    5,612
    Hi Gemma and welcome to the forum,

    A lot of good advice already. It does take a bit of time to get your head around a diagnosis like this.

    Please feel free to ask any questions.

    Best wishes Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #13
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    5,612
    Hi Killygirl and welcome to the forum,

    You will have to try and be a go between and ask questions on your sisters behalf.

    Best wishes Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  4. #14
    Forum Member
    Join Date
    Jul 2016
    Posts
    15
    Wow, thank you everyone for all the replies so far.

    I haven't actually been told what type I have yet but with the symptoms I am currently showing my consultant believes it's one of the slower progressing forms.

    I have read a lot about the research that is going on and recent breakthroughs so we are getting ever closer to a cure. I have also read a lot about how many fit and active people develop the sporadic form of the disease. I've no preivious family history of MND or MS but both my grandparents had bad Alzhimer's.

    Interesting to hear about Riluzole. I'd be keen to hear about other people's experiences with the drug One good thing I guess is that you can always stop taking it if the side effects start to affect your quality of life. I have just heard that it's more effective the earlier you take it?

    Thank you for the advice on the adaptations I can make. I have my first visits from an OT and PT at the end of the month. They are coming to assess me in my own home.

    Thanks again!

  5. #15
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    5,612
    Hi Gemma;

    There has been quite a lot written about Riluzole on this sit, most of it positive.

    He are a few links to some threads about it:-

    http://forum.mndassociation.org/show...light=riluzole

    http://forum.mndassociation.org/show...light=riluzole

    http://forum.mndassociation.org/show...light=riluzole

    Please feel free to ask aswell.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  6. #16
    Forum Member Katrina36's Avatar
    Join Date
    Jul 2015
    Location
    Scotland
    Posts
    1,069
    Hi Gemma, my dad has taken Riluzole for a year now and had no side effects at all from it,, maybe. It everyone is the same but thought I'd let you know ..... Katrina x

  7. #17
    Fraser
    Guest
    Hi Gemma,

    I was diagnosed about 8 weeks ago. Like you I was always fit and healthy, and first symptoms I noticed was upper body weakness while at the gym. Took several months before I got confirmed diagnosis, but I knew within myself what it was several months before diagnosis was confirmed, you know your own body! With the benefit of hindsight I had first symptoms last summer, but no weakness at that point.

    Like you, I'm still coming to terms with it. I'm still able to walk and have no speech or swallowing difficulties so far, just upper body weakness. I'm also going to bank my voice in the coming weeks.

    My advice would be to make the most of the time you have before things progress.

    Fraser

  8. #18
    Forum Member Katrina36's Avatar
    Join Date
    Jul 2015
    Location
    Scotland
    Posts
    1,069
    Hi Fraser, sorry to hear about your diagnosis, did they say what type you have?,, I see you have put your from Scotland, can I ask what part and what team you are under?.... My dad has mnd and from Scotland also... Katrina x

  9. #19
    Forum Member
    Join Date
    Jul 2016
    Posts
    15
    Thanks all those other threads about Riluzole were really helpful.

    Sorry to hear about your diagnosis too Fraser. We've just got to remain positive and make the most of life, taking each day as it comes.

    There's still so much that I haven't done and was curious to hear people's thoughts about women who have MND and getting pregnant. I wasn't ever sure whether I wanted children anyway (always been very career focused) but I'm just interested to hear about the advice women have been given.

    Gem xxxx

  10. #20
    Fraser
    Guest
    Hi Katrina, I'm under Dr Davenport's team in Edinburgh Royal Infirmary. Where's your Dad being treated?

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •