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  1. Thread: Breathing

    by Jaxx
    Replies
    7
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    1,827

    We have a cough assist machine, but since she’s...

    We have a cough assist machine, but since she’s started taking most sustenance through the peg it doesn’t seem as bad.
  2. Thread: Stair lift

    by Jaxx
    Replies
    5
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    2,165

    We have a one on loan through the OT

    We have a one on loan through the OT
  3. Replies
    63
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    12,963

    Thank you Ellie, she has an overnight feed of...

    Thank you Ellie, she has an overnight feed of around 750 mls building it up eventually to 1300mls and anything she manages to eat during the day is a bonus, I’m glad we can put water via the tube...
  4. Replies
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    14,493

    We have a VW caddy that she can drive her power...

    We have a VW caddy that she can drive her power chair into an is more or less between the the two back seats with plenty room behind her for luggage etc.
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    9,454

    Hello Daniel, sorry you find yourself on this...

    Hello Daniel, sorry you find yourself on this forum, hopefully they will diagnose something else, I will keep my fingers crossed, I知 the Mum my daughter was diagnosed Sept 17 a couple of months...
  6. Thread: Finding comfort

    by Jaxx
    Replies
    59
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    14,460

    Sadly welcome Dawn, my daughter was also...

    Sadly welcome Dawn, my daughter was also diagnosed Sept 17 at 33 just after having her 2nd baby, people here are very helpful and usually have an answer to any question.
  7. Replies
    63
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    12,963

    My daughter just had peg fitted, going to have...

    My daughter just had peg fitted, going to have feed overnight then try to eat what she can through the day, we are all a bit nervous about it they are coming out to instruct us on the pump on...
  8. Thread: Publicity

    by Jaxx
    Replies
    4
    Views
    2,686

    My daughter was a competitive swimmer for 8 yrs...

    My daughter was a competitive swimmer for 8 yrs and trained around 6 times a week!
  9. Thread: Botox !

    by Jaxx
    Replies
    15
    Views
    7,587

    My daughter just had Botox injected into her...

    My daughter just had Botox injected into her salivary glands to hopefully cut down on excess saliva.
  10. Replies
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    4,351

    Hi Louise so sorry you find yourself here, it’s...

    Hi Louise so sorry you find yourself here, it’s my daughter that has this horrendous disease fairly quickly diagnosed in Sept 17 at the age of 33 a couple of months after having a baby,
    I can...
  11. Thread: CuATSM ?

    by Jaxx
    Replies
    26
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    7,027

    What have sufferers got to lose ?

    What have sufferers got to lose ?
  12. Replies
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    6,270

    My daughter was 33 when diagnosed last year and...

    My daughter was 33 when diagnosed last year and was on maternity leave when it struck she never returned to work, she did take the driving assessment which they were happy with but she very soon had...
  13. Replies
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    4,448

    Kayleigh thank you for your comments my husband...

    Kayleigh thank you for your comments my husband and I are going to stay over on Christmas Eve so I can guarantee she will be in the living room when the children walk in, seeing your children’s faces...
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    4,448

    Thank you Kayleigh, I grieve for Jen not being...

    Thank you Kayleigh, I grieve for Jen not being able to read or sing to her baby hold his hand walking back from nursery and all the things young Mums do with their babies, her 9 yr old is struggling,...
  15. Replies
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    4,448

    We have not been told about this just in case kit.

    We have not been told about this just in case kit.
  16. Replies
    18
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    8,389

    When my daughter started displaying symptoms I...

    When my daughter started displaying symptoms I simply went on google symptom checker and typed in all her symptoms it told me the worst.
  17. Replies
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    32,539

    Hello Douglas and Christine, and sadly welcome, ...

    Hello Douglas and Christine, and sadly welcome, I am a mother, daughter (33) diagnosed Sept 17 a few months after having a baby also has an 8 year old, We are totally devastated by this disease, it...
  18. Thread: Riluzole

    by Jaxx
    Replies
    53
    Views
    32,133

    What trial are you entering? Most trials I’ve...

    What trial are you entering? Most trials I’ve been aware of say you have never had to have taken Riluzole. My daughter got the liquid form from her consultant no problem,
  19. Replies
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    15,188

    My daughter was a competitive swimmer, trained 6...

    My daughter was a competitive swimmer, trained 6 times a week completions most weekends, makes you wonder.
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    1,444

    My daughter wants a tattoo too the names of her...

    My daughter wants a tattoo too the names of her children, just hasn’t got round to it yet.
  21. Thread: Shoes!

    by Jaxx
    Replies
    17
    Views
    5,361

    How do the ankle braces work, we have a problem...

    How do the ankle braces work, we have a problem with Ankles going over when trying to weight bare, got appointment at hospital to see about getting something.
  22. Thread: holiday insurance

    by Jaxx
    Replies
    18
    Views
    5,181

    I agree with Deb, if you are on a separate policy...

    I agree with Deb, if you are on a separate policy and had to return because of something connected you wouldn’t be covered, when we went to Disney we all went on one policy.
  23. Thread: holiday insurance

    by Jaxx
    Replies
    18
    Views
    5,181

    We went with ‘insure with ‘ very reasonable and...

    We went with ‘insure with ‘ very reasonable and everything covered, good luck.
  24. Replies
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    10,492

    Ellie, I would be very interested in your...

    Ellie, I would be very interested in your children’s experiences, I appreciate her baby may never remember her but her 8 yr old wishes everyday her Mum would get better. X
  25. Replies
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    10,492

    Hello, Cc thank you for your support, I agree...

    Hello, Cc thank you for your support, I agree everyone has their opinion and their own mind set on how the they deal with and live with this disease, again Ellie I’m happy for the way you seem to be...
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