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  • Hi grgizi121,

    I have not seen it either, but I want to. However, I am a CALS, not a PALS, so that could make a difference. But as NH says, maybe there are things to learn by watching it.......I don't know.

    I think olly can tell you how to see the 'movie'. You may have to order a 'copy' or maybe download it? There were restrictions, as I read from olly's earlier posts about it. Go back and read her thread. There is some info there.

    As far as your question, I can't answer that. It's probably one of those 'individual' things/choices.

    Anyway, good luck,
    Steve
    Hi,i have not been on the forum since last week.
    I just found out of your husbands diagnosis,was so hoping for good news for you.
    This forum is a wonderful place for help, support and friendship ....we understand what your going through and are always here for you.
    Did you enjoy your break? I do hope so.
    Please call on me for anything ,anytime.
    I hope you will find comfort here. It will help a lot when you will have a chance to meet someone from the mnd association and clinic.

    I was dx at 39. I have 3 kids. I would be lost without them. My youngest were 2 yo and 1 mth newborn. All 3 keep us on our toes and i feel truly blessed to have them around. For the most we even forget about my dx.

    It will be ok.
    Hi

    Just wanted you to know that if you need a shoulder to cry on I am here.



    Love and hugs

    Vicki
    Thats great that his tests are so quick.
    I sent you a friends request so then you can have full access to my profile page.
    Hope you have a lovely weekend.
    Take care.
    Hi Caroline

    Thank you for trying to help with that. I did try to look up Brooksea after your reply, but I am still trying to navigate the site and didn't get very far!

    His MRI was today and EMG is currently booked for Friday but then the neurologist only works mon/thurs and with the bank holiday we won't be able to see him until 30th. I guess its not as long as some people on here seem to wait so I should be thankful!

    We have booked a family break away for the coming weekend which hopefully will distract us a little :D must try to concentrate on that instead

    Thank you x
    Just had a quick look and put flail arm syndrome in search....came up with a thread you mind find helpful.
    Ok,tried to insert link to thread but its not having any of it.
    At top of the page were all the forums are listed click on SEARCH....put in flail arm syndrome.
    It will show you 10 threads yours at the top.......4th one down is the one i mentioned above.
    Take care.
    Hi,just wanted to let you know i have been thinking of you and your husband.

    Brooksea has not been around for many months,i did try to go back to 2006 to find her first posts that may shed some light to the start of her husbands progression.......but unfortunatly after spending a good hour or so could'nt find anything. will look again when i have more time as there was another member whos husband also was arm onset.

    Whens your husbands mri/emg? Hope your not waiting too long.
    Wish i could help more,i'm here if you need me....just send a message on my profile page,it takes a number of posts untill you can private message.
    Take care. caroline.
    Hi
    Thank you for taking the time to write your message. It has already been a real comfort hearing from people on this forum. For the first time since we met 15 years ago i am trying not to discuss all my fears with my husband as it seems so selfish of me, so knowing I can discuss them on here helps a lot
    I was a little nervous at first that I would be dismissed as paranoid or time wasting when people are actually living with this awful disease.
    I am an accountant so I like facts, figures and to analyse things a lot. I have often been told I ask too many questions, but I like to understand how thinks work and what to expect next! I fear that the most about this, nobody seems to have the answers I so desperately want/need and I fear they never will.
    I guess as long as my husband hasn't been diagnosed then there is still hope, and I am determined to enjoy our little family even more than ever
    Karen
    Hello grgizi21,

    Sorry you have a reason to be here, but welcome anyway. Everyone here has gone through basically the same process you are now going through. It's just the nature of the business, as we painfully find out.

    We all know exactly the range of emotions you are experiencing, as we have also experienced those same emotions. That is what makes this forum so cool. You are talking to people who understand, and we all lean on each other for support and advice.

    Although we are not Dr.s or specialists, (we do have one Dr. among us, 'Wright') some of us (the more established members) do have extensive experience with this disease, as you are seeing. Some have more than others, naturally.

    I'm seeing people from all over the world, so this disease doesn't care where (or who) it strikes. This is our common tie. The hardest thing (initially) is the 'not knowing' and having patience. Listen to your Dr.s, and come here when you need a place to talk.

    Hang tough,
    Steve
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