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  1. Thread: Breathing

    by Jaxx
    Replies
    7
    Views
    1,352

    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
    Views
    1,433

    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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    8,552

    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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    6,110

    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.
  5. Replies
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    7,030

    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
    Views
    10,074

    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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    8,552

    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
    2,065

    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
    3,242

    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
    12
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    3,379

    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
    Views
    4,711

    What have sufferers got to lose ?

    What have sufferers got to lose ?
  12. Replies
    22
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    4,782

    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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    3,247

    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...
  14. Replies
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    3,247

    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
    12
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    3,247

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

    We have not been told about this just in case kit.
  16. Replies
    14
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    4,489

    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. Thread: My darling Peter

    by Jaxx
    Replies
    31
    Views
    6,970

    So sorry to hear of your husbands passing.

    So sorry to hear of your husbands passing.
  18. Replies
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    2,226

    Hi Trevor, I completely understand how she feels...

    Hi Trevor, I completely understand how she feels I’m the Mum of Jen diagnosed last Sept at 33 yrs old having just had a baby, I still haven’t come to terms with this and am overwhelmed regularly....
  19. Replies
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    2,267

    Sadly welcome, I’m the Mum of Jen who was...

    Sadly welcome, I’m the Mum of Jen who was diagnosed Sept 17 at 33 yrs old and 3 months after having a baby, she also had a 7 yr old, it has been quite fast progression for her with only the use of...
  20. Thread: Hair loss

    by Jaxx
    Replies
    14
    Views
    3,059

    Thank you Kayleigh your thoughts are very much...

    Thank you Kayleigh your thoughts are very much appreciated and love to you and yours.
  21. Thread: Hair loss

    by Jaxx
    Replies
    14
    Views
    3,059

    Hi Kayleigh, this is the place to be if you need...

    Hi Kayleigh, this is the place to be if you need to talk as people are so knowledgeable about all things MND, it is so hard to accept and wish everyday the news would say there is a breakthrough, my...
  22. Thread: Hair loss

    by Jaxx
    Replies
    14
    Views
    3,059

    Hi Kayleigh, my daughter saw her gp and was told...

    Hi Kayleigh, my daughter saw her gp and was told it wasn’t connected to MND but was some kind of alopecia due to stress, over the months I’ve noticed the patches are no longer smooth but looks like...
  23. Replies
    11
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    3,878

    So sorry you have found yourself here it’s not...

    So sorry you have found yourself here it’s not where anyone wants to be, although this is the best place for advice and information as contributors or either sufferers or their careers. Best wishes.
  24. Thread: CBD oil

    by Jaxx
    Replies
    41
    Views
    13,103

    Has anyone tried the real I am?

    Has anyone tried the real I am?
  25. Replies
    207
    Views
    14,742

    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...
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