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

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  • Lynne K
    replied
    Hi Lorri, welcome to our forums. I’m very sorry that your young daughter was diagnosed with MND. As already stated we do have people on here from other countries. I have some relatives in the US. One is Loraine, called Lorri often so might be similar to your name. It is very hard at the beginning so take care of yourself as well as your daughter. Ask whatever you want.

    I hope that your daughter has good health insurance because MND or ALS as it’s called over there is very needy in medical help, social care and specific aids to help keep mobile and independent for as long as possible. Walking aids, wheelchairs as examples. She will probably need talking software sometime or other. It’d be a good idea to do voice banking while she still has a clear speaking voice. Model Talker is a US group that does this. So maybe you could research this for your daughter. When she’s completed her voice banking she can buy the download for her device. I’ve got mine on my iPad in Predictable. This is the software that uses banked voices to give people who have difficulties speaking their own voice back, well pretty close to it.

    Take care ,
    Lynne

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  • Terry
    replied
    Hi Lorric and welcome to the forum;

    So sorry to hear about your daughter's diagnoses.

    Please feel free to ask any question or to just share things with us.

    Best wishes, Terry

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  • Double D
    replied
    Hi Lorri,
    I'm sure everyone is welcome.

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  • Double D
    replied
    Hi Gemma,
    Welcome and I'm so pleased you have contacted this forum.
    Although I've been living with MND for a few years I am relatively new to this.
    Everybody here seems to be very supportive.

    What part of the country are you in. Have you made contact with your local MNDA group.

    It's all about finding ways to make things easier.

    DD
    x

    Leave a comment:


  • nunhead_man
    replied
    Hi Lorri

    Sorry to hear you have to join the forum for the reasons that you give.

    But a warm welcome of course!

    We have people on this forum from different parts of the world and so I'm sure I'll get corrected if somebody thinks you shouldn't be here but I doubt it.

    Do ask away if you have questions?

    Leave a comment:


  • Lorric
    replied
    Hello,
    I am so sorry to read what you’re going through. Our 28 year old daughter was just diagnosed with MND. We are distraught beyond words and found this forum. Her symptoms sound like the timeline of yours. We are in the U.S. but hopefully it’s okay to be part of this group.
    Right now, she want to keep it private so it’s difficult to post to other groups in the U.S.
    Thanks,
    Lorri

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  • Lycanthrope
    replied
    Hi Gemma x sorry to hear you have MND, but welcome to the forum xxx Becky

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  • Katrina36
    replied
    Hi fraser, I know who you are talking about, dads respitory team are from there, but his mnd team are from ninewells in Dundee, he is under dr Morrison and gilbertson... Katrina x

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  • Guest's Avatar
    Guest replied
    Hi Katrina, I'm under Dr Davenport's team in Edinburgh Royal Infirmary. Where's your Dad being treated?

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  • GemmaPob
    replied
    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

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  • Katrina36
    replied
    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

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  • Guest's Avatar
    Guest replied
    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

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  • Katrina36
    replied
    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

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  • Terry
    replied
    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

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  • GemmaPob
    replied
    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!

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