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Type: Posts; User: Hayls

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  1. Thread: Pain in bed

    by Hayls
    Replies
    19
    Views
    8,680

    Iím having a lot of pain in my ankles, hips and...

    Iím having a lot of pain in my ankles, hips and sometimes knees in bed, I donít want to take beclofen as Iím not adequately homed and donít have the lifting equipment to not be able stand which...
  2. Replies
    71
    Views
    7,641

    Doug Nicely put, this is a scary time and my...

    Doug
    Nicely put, this is a scary time and my heart goes out to anyone affected by this but as I use to be a community carer, every year, flu would weaken and kill many elderly people, it was so sad,...
  3. My MND was bulbar onset, it was very scary, is...

    My MND was bulbar onset, it was very scary, is your breathing affected? Iím having all fluids and nutrition and medication via a feeding tube, no vocal ability but my breathing muscles are currently...
  4. Thread: Dreams

    by Hayls
    Replies
    7
    Views
    709

    My dreams havenít caught up with my lack of...

    My dreams havenít caught up with my lack of physical ability but often reflect my and mirror my feelings, I often wonder if itís my brains way of preparing my mental health to tackle or enjoy what...
  5. Thread: Newly diagnosed

    by Hayls
    Replies
    11
    Views
    1,452

    Hello Lizzie, Start of my symptoms of MND is...

    Hello Lizzie,
    Start of my symptoms of MND is very similar to yours, I totally understand your determination to get out and experience life while we can, my Fiancť thought I was in denial but it was...
  6. Sparkle, I also have a theory and many other MND...

    Sparkle, I also have a theory and many other MND diagnosed think that prolonged stress can trigger the condition but in reality nobody knows for sure, Iíve tried to not think about it, Iím trying to...
  7. Thread: Lining alone#2

    by Hayls
    Replies
    26
    Views
    5,484

    Andy, thank you so much for your hints and tips,...

    Andy, thank you so much for your hints and tips, I think I might have to move away from my support network of Family and Friends and incredible hospice, my hubby has a property that is very rural but...
  8. Thread: Lining alone#2

    by Hayls
    Replies
    26
    Views
    5,484

    Hello Panniertank and Andy My OT seems very good...

    Hello Panniertank and Andy
    My OT seems very good but Iím often wondering if sheís going OTT with her specifications 3 properties have fallen though for me and hubby because the properties canít be...
  9. Thread: Ibuprofen

    by Hayls
    Replies
    4
    Views
    711

    alternative to ibuprofen can be...

    alternative to ibuprofen can be https://www.bemedwise.org/health-research-and-reports/health-resources-and-toolkits-2/acetaminophen/acetaminophen-containing/
  10. Thread: Douglas

    by Hayls
    Replies
    11
    Views
    1,397

    Biggest hugs xxx

    Biggest hugs xxx
  11. Thread: Stomach problem?

    by Hayls
    Replies
    34
    Views
    4,305

    How heartbreaking :,(

    How heartbreaking :,(
  12. Replies
    6
    Views
    1,146

    My hands are now totally affected, I had a NHS...

    My hands are now totally affected, I had a NHS team called Enviromental control service who provide many other devices to adapt operating any electrical devices from turn the TV channel over...
  13. Thread: Nausea

    by Hayls
    Replies
    3
    Views
    674

    Hello Standardbeatz, I had terrible time with...

    Hello Standardbeatz,
    I had terrible time with nausea, Doctors where perplexed as to the cause, as I have bulbar palsy vomiting was especially distressing as my airway would spasm and it was...
  14. Replies
    8
    Views
    1,203

    Hello Boden, I suffered terribly from emotional...

    Hello Boden, I suffered terribly from emotional lability, it was extremely frustrating which ironically made my emotions even worse, I would laugh for hours over someone dropping something, it was...
  15. Thread: Swollen ankles

    by Hayls
    Replies
    3
    Views
    777

    Since Iíve become less mobile I now suffer from...

    Since Iíve become less mobile I now suffer from swollen lower legs, at first my physio therapist suspected DVT but thankfully that was ruled out my team says itís natural because Iím not using my...
  16. Thread: Sad News.

    by Hayls
    Replies
    15
    Views
    2,166

    You and your Dad are just as courageous for...

    You and your Dad are just as courageous for supporting her throughout and understanding when she felt enough was enough, big hugs
  17. Replies
    6
    Views
    6,817

    Thank you Terry and Sarah, very helpful, extra £8...

    Thank you Terry and Sarah, very helpful, extra £8 a week if it eases pressure will be priceless. Iím due to start receiving my pension soon but I donít think it will be enough so Iím hoping Iíll...
  18. Replies
    6
    Views
    6,817

    Hello everyone, Iím not far away from needing...

    Hello everyone, Iím not far away from needing more care and donít want all the pressure to be on hubby, after working in care when I could work, I know how much trouble agency companies can be, I...
  19. Replies
    5
    Views
    355

    Iím chuckling already, love it, well done Sar ;)

    Iím chuckling already, love it, well done Sar ;)
  20. Thread: PEG Advice

    by Hayls
    Replies
    42
    Views
    13,679

    Thank you Terry, my RIG procedure was very poorly...

    Thank you Terry, my RIG procedure was very poorly managed and I think my whole digestive system is still recovering from the knock on affects from all the difficulties. Prior to the procedure my...
  21. Thread: PEG Advice

    by Hayls
    Replies
    42
    Views
    13,679

    Ellie, your amazing as always, I never knew the...

    Ellie, your amazing as always, I never knew the difference between different laxatives. Now I know, Iíll give it a try, Iíll keep just my fingers crossed lol
    My Diatician suggested 200ml 4 times a...
  22. Thread: PEG Advice

    by Hayls
    Replies
    42
    Views
    13,679

    My drama still continues :( sorry to be so...

    My drama still continues :( sorry to be so personal but my bowels havenít been normal since having my RIG fitted, I ended up severely constipated I was immobile so Iím certain that was the cause but...
  23. Replies
    1
    Views
    441

    Mnda East Dorset and New Forest

    If you live in the local area, please register your interest on https://www.mnd-smart.org/ if your willing to take part, Dr Hillier has registered to have a trial local and the more people that...
  24. Thread: Doddie Weir

    by Hayls
    Replies
    12
    Views
    3,575

    Thanks Barry

    Thanks Barry
  25. Replies
    7
    Views
    1,425

    Hello Shaun, Ellie is right, a local hospice...

    Hello Shaun,
    Ellie is right, a local hospice will be a huge resource for information and support, my local hospice is Macmillian, I thought they where cancer only but I was totally wrong, they...
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