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    Evening Ellie :D Touchwood my breathing appears...

    Evening Ellie :D
    Touchwood my breathing appears unaffected but last lung function test was February so I’m keeping my eyes crossed ( it’s the only part I can cross) ;) lol
    No date given but as soon...
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    On Monday managed to have a face to face...

    On Monday managed to have a face to face appointment with a urologist regarding subpubic catheter and consultant said my podge/ size isn’t an issue and will be done under general anaesthetic as long...
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    ;) and mine too ��

    ;) and mine too ��
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    Matthew, I’ve told my family that if I get Covid...

    Matthew, I’ve told my family that if I get Covid I don’t want a ventilator and I have a DNR in place, I’d rather day that way instead of being starved or be dehydrated to death, that’s what they did...
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    I had my tube fitted December 19 I couldn’t...

    I had my tube fitted December 19 I couldn’t tolerate the endoscopy in my throat as my emotional lability was out of control so they did a RIG via X-ray, you get the specialist to explain all options...
  6. Thread: Hot hot hot

    by Hayls
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    460

    Hello Cocoa Heat is definitely affecting my...

    Hello Cocoa
    Heat is definitely affecting my MND, I invested in a Dyson Airflow fan, it makes the air feel not so stuffy, it’s working a treat for me and keeping all blinds and windows closed, hope...
  7. Thread: Hello everyone

    by Hayls
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    1,249

    Ooo talcum powder is on my shopping list, thank...

    Ooo talcum powder is on my shopping list, thank you
  8. Thread: Hello everyone

    by Hayls
    Replies
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    1,249

    Jules, I totally have the same issue, it’s...

    Jules,
    I totally have the same issue, it’s occurs when I’m hot, hubby has to peel my legs and butt off before a lift otherwise the chair comes with me, no matter what way we do it it’s painful :(
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    I moved at beginning of May and noticed my...

    I moved at beginning of May and noticed my twitching in parts of my body that I never existed ����
    But my body has managed to calm, in my head I felt not stressed but the body thought otherwise,...
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    Travelling in wheelchair 🦼

    I finally have our WAV:o
    I had the most amazing couple of hours out and about but if anyone knows Bournemouth, it’s full of roundabouts and one down I noticed my feet on my foot plates slip off and...
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    Hiya Wayne, I’ll be 38 years old 1 month today,...

    Hiya Wayne,
    I’ll be 38 years old 1 month today, I was informed 1 year ago tomorrow that I had MND, I felt relieved that finally I knew why I was feeling crazy and loosing my strength but then I...
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    Hiya Tom, Reach out, I’m reaching out to you...

    Hiya Tom,
    Reach out, I’m reaching out to you
    1158
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    Hayls on Tour, love that Ellie xx Poorly...

    Hayls on Tour, love that Ellie xx

    Poorly fitted they think, I have the same make and size so assumed poorly fitted was the cause, definitely a tip for anyone considering a Catheter, you definitely...
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    Update, never under estimate the risks, oh my!...

    Update, never under estimate the risks, oh my!
    First catheter ended up being completely replaced due to Bypass problems and ended up with a UTI with attitude!!
    I now have a new catheter and it fits...
  15. Thread: Hot Tub!?

    by Hayls
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    I can’t get in my hot tub anymore but the hurt...

    I can’t get in my hot tub anymore but the hurt would help relax tense muscles and thaw out ice cold limbs, does he still have muscle twitches? The hot tub doesn’t stop them but helps them not be as...
  16. Thread: Life continues

    by Hayls
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    ;) I love it, Ellie your amazing, I’ll get hubby...

    ;) I love it, Ellie your amazing, I’ll get hubby to get it for me ;)
  17. Thread: Life continues

    by Hayls
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    The first time hubby came home with one for me,...

    The first time hubby came home with one for me, my face wasn’t amused but I love my bib now, it’s my trusty boob protector ;)
  18. Thread: Work rights

    by Hayls
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    Definitely get GP to sign you sick and while...

    Definitely get GP to sign you sick and while you’re signed off work they can’t end your contract, stay off sick as long as you can then find out your pension options, fight for your corner
  19. Thread: Electric toilets

    by Hayls
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    1,186

    Hello piglet, My community OT got funding for a...

    Hello piglet,
    My community OT got funding for a Bio-Bidet which is a toilet seat that can fit over a normal toilet, it isn’t perfect, I’m not able to sit forward or backwards or readjust myself but...
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    Awww Debbie, Get some rest, recharge your...

    Awww Debbie,
    Get some rest, recharge your batteries and super glad you and Hubby had a giggle, thank you for getting me giggling too ;)
  21. Thread: Ric feed

    by Hayls
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    I have RIG tube that I take nutrition and all...

    I have RIG tube that I take nutrition and all fluid through, it’s very similar to a PEG is that what was mentioned?
  22. Thread: Brave or stupid?

    by Hayls
    Replies
    6
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    I was bulbar on set, for 6 months after diagnosis...

    I was bulbar on set, for 6 months after diagnosis I continued to be mobile hoping I’d be lucky but once my right foot was affected it’s been a domino effect and I’ve gone from happily walking round...
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    Aww thank you Debbie, Much more comfortable...

    Aww thank you Debbie,
    Much more comfortable thank you, I’m now flowing freely :o and can sit forward, wohoo
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    Oh Ellie, you are a real gem, thank you, Next...

    Oh Ellie, you are a real gem, thank you,
    Next instalment, ended up in a lot of pain and started bypassing it, District nurse came out and suspected it wasn’t positioned correctly, what a drama, hope...
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    Update I had my catheter fitted on Thursday and...

    Update
    I had my catheter fitted on Thursday and I’m finding it very uncomfortable to sit or lean forward, is that to be expected?
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