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Thread: Hi everyone, i'm a new member

  1. #1
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    Post Hi everyone, i'm a new member

    Hi, my name is Ailsa and i was diagnosed with ALS 3 weeks ago. I have a 6 year old daughter called Isabella.
    I am a 30 year old female so very unlucky to have this disease.I am being very head strong at the moment but i'm finding it hard with the physical side of things as I am young and still like to party and socialise. It's all a very surreal!!

  2. #2
    Forum Member pete's Avatar
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    Hi Ailsa,

    Welcome to our club, I think your "unlucky" description does not do it justice , Nothing I can say to you will improve how your feeling right now , what I do know is try your hardest to remain positive at all times and try to do all things you could before ,never give into this condition ,we are all here when you fancy a rant, chat ,or just advice . I was going to say it's unfair at such a young age ,as our moderator hates bad language it forbids me expressing more strongly how sorry I truly am that your having to deal with this and raise your daughter, my best wishes to you both.

    Regards
    Pete
    Last edited by pete; 19th August 2013 at 21:08.
    All I need is a miracle

  3. #3
    Forum Member roy's Avatar
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    Hi Alisa,

    A big welcome from me too, glad to hear your still going out having a good time with you're friends.
    If or when your ready there are many on here who help anyone with practical help and support
    also the the mnd helpline is available who can also help.

    Best wishes.

    Roy.
    Good as it gets :-)

  4. #4
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    Thank you guys,I am remaining positive as there is no point sitting around crying as it can't change anything! Also I want my daughter to see how strong I am so she can follow in my footsteps. .
    I am going to try and do something positive with my life now and will focus on raising awareness.
    I have such a large social network and everybody is doing everything they can so me and Isabella can get on with our bucket list. This keeps me strong.
    I am having a couple of fundraising ball's (which I am really excited about!!) and there are countless sponsored events that people I don't even know are doing for me! Also I have an interview coming up for a story in my local paper and am just waiting to hear back from the programe, "this morning"! I have never wanted to be famous but it is now my sole mission! haha.
    I went into a couple of bars the other night with my friends and my picture was up in all of them. Was very odd!!

    xxx

  5. #5
    Forum Member AP1978's Avatar
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    Hi Alisa,

    You sound like a very strong lady, your little Isabella will keep you positive! Best wishes for the future x

  6. #6
    Forum Member john's Avatar
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    Hi Ailsa,

    So sorry you find a need to be here and sorry to hear about your situation. If you have a look around you will find post by Jeannie, she was diagnosed 11 plus years ago in her early thirties and her signature says she is singing and dancing inside. Sounds like a lady after your own heart and I seem to recollect she also has a child/ children like yourself. She doesn't post so much these days probably because she is getting on with her life. I am sure if you send her a pm she would have much to share. You may have to make 5 posts before you can look at profiles and post.
    Raising the profile of the disease is terrific and very unselfish of you so soon after your diagnosis. Good luck with it all and let's hope we never tire of seeing you on telly!

    John

  7. #7
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    Hi Ailsa

    As said by all the above, welcome, and sorry for your need to be here. Besides being head strong as you say, your also brave with a very positive attitude so quickly after your diagnosis, good for you!! You came to the right place, you will find the most caring, supportive and extremely knowledgeable group of people here.

    Stay strong and positive, all the best to you.
    CC
    .

  8. #8
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    Hi Ailsa, so sorry you find yourself on this site but I am sure you will find the postings both supportive and helpful. Your daughter will gain much of her strength in coming to terms with this from how she sees you coping and by the sounds of it your strength is shining through.
    Making the most of every moment of every day is the only way forward and our family have felt so much love from those around us as I am sure you will too. Very kind regards Angela

  9. #9
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    Thank you,
    I am struggling with fatigue big time at the moment and just trying to adapt which is frustrating.
    On a positive note I had a photo shoot for my local paper yesterday and is going to be a front cover exclusive! which to me is funny, After that they want to take it national!
    Ailsa xx

  10. #10
    Forum Member john's Avatar
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    This was a recent post on alstdi which might be worth exploring. I think there has been talk of hrt as helping but you may feel too young for that.

    FightingMom1
    Posted: Thursday, August 22, 2013 7:47:38 AM
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    Quote
    My son, Josh, is on HGH, Testosterone, Dhea (and lots of supplements and some meds) through a physician at an anti-aging clinic. He had blood tests done and his testosterone levels were really really low. The physician said this was a part of why he was so dreadfully tired. I really wish we had started testosterone a long time ago - Josh feels like he feels better and has much more energy, gets up early and doesn't nap often. I don't know why no one tested his levels prior to this specific bloodwork. Now that he is on it - it makes sense that it could have possibly helped him early on. It is so frustrating that some of these 'easy',available and obvious health treatments are so overlooked in ALS. That could slow progression and/or at least make the patients possibly feel better and enjoy a little more quality of life....

    I suggest you have your PALS levels checked - because if the levels are low - a physician can write him a script for testosterone and insurance may cover it.

    All the best, Kathy T


    John

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