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  1. Thread: RIP Fru's Ed

    by Sueb
    Replies
    14
    Views
    1,772

    Hi Fru Sorry to hear of you loss. Treasure...

    Hi Fru

    Sorry to hear of you loss. Treasure all those memories you have made together.

    Sue and Steve x
  2. Thread: Sore bum!

    by Sueb
    Replies
    17
    Views
    2,908

    Thanks for the feedback Steve seems to sit to...

    Thanks for the feedback

    Steve seems to sit to his left side so left buttock gets painful also his coccyx gets sore. He seems to slide slightly forward too. He has had a invarcare one with gel in...
  3. Thread: Sore bum!

    by Sueb
    Replies
    17
    Views
    2,908

    Steve has the same problem with his seat cushion...

    Steve has the same problem with his seat cushion on his power chair. He has tried different ones that initially seem ok then they get painful. We are going to wheelchair services next week. Was...
  4. Replies
    34
    Views
    6,368

    Glad you are enjoying your holiday Barry even...

    Glad you are enjoying your holiday Barry even with a bruised hip.

    Sue
  5. Thread: Ideas of food

    by Sueb
    Replies
    11
    Views
    1,515

    Hi Terry I will get some of that for Steve. He...

    Hi Terry

    I will get some of that for Steve. He is just starting to eat again after his time in hospital, he had trouble swallowing with all the secretions but it is now getting better and likes a...
  6. Replies
    45
    Views
    5,143

    We used Allied Mobility for our Wav,they bought...

    We used Allied Mobility for our Wav,they bought out 2 different vehicles on one day. Steve tried them out and we went for a drive in one of them, Steve didn’t fit in the belingo so we tried the Ford...
  7. Replies
    45
    Views
    5,143

    Hi Lynne Our Wav took 6 months but that was...

    Hi Lynne

    Our Wav took 6 months but that was only because of the automatic engine change which we did know about. It was something to do with emissions. I think it would have been much shorter time...
  8. Replies
    45
    Views
    5,143

    Hi Lynne We exchanged our moability car for a...

    Hi Lynne

    We exchanged our moability car for a wav. We didn’t have to pay the 250 but you do have to have a year left on your pips assessment. They gave us a grant towards the down payment, but...
  9. Thread: Fed up

    by Sueb
    Replies
    74
    Views
    7,830

    Hi Pink Glad you are feeling a bit better hope...

    Hi Pink

    Glad you are feeling a bit better hope you continue to improve. We hope you get to the wedding, but watching it on live streaming will at least allow you to part of it.

    Sue
  10. Replies
    10
    Views
    2,207

    Hi Maid Welcome to the forum. I care for my...

    Hi Maid

    Welcome to the forum. I care for my husband who was diagnosed July 2014. His shoulders and arms were the first parts of his body that he had problems with. I can understand your...
  11. Replies
    63
    Views
    8,142

    Hi Thank you everyone. Steve is obviously very...

    Hi
    Thank you everyone. Steve is obviously very tired. He is using cough assist to get the secretions up and the physios come 4 or more times a day. They are very happy with him. He will taking the...
  12. Replies
    63
    Views
    8,142

    Thanks Barry and Shrew I hope he is too. I will...

    Thanks Barry and Shrew I hope he is too. I will pass on your best wishes Barry and hopefully he will be well enough for the next meeting.

    Sue
  13. Replies
    63
    Views
    8,142

    Hi Ellie Steve doesn’t have IBS. It’s unusual...

    Hi Ellie

    Steve doesn’t have IBS. It’s unusual for him to go to the toilet so often and that’s why they gave him multi fibre to start with.

    They started the pump at 30mls and are gradually...
  14. Replies
    63
    Views
    8,142

    Steve has just had a rig fitted. Can I ask what...

    Steve has just had a rig fitted. Can I ask what type of feed you have. Steve was started on bolus feed 2 to 3 times a day using Nutrison Energy multi fibre. He can still eat a soft diet but after 2...
  15. Thread: painful shoulders

    by Sueb
    Replies
    20
    Views
    2,905

    Hi Shrew Steve has a problem with his...

    Hi Shrew

    Steve has a problem with his shoulders, he had a rotator cuff injury and he still gets pain with it, then with loss of muscle it can be painful. He has two thin pillows in a upside down...
  16. Thread: Riluzole

    by Sueb
    Replies
    25
    Views
    4,935

    Steve has got Sun Pharma this time. They are much...

    Steve has got Sun Pharma this time. They are much better.

    When we had them from before from boots they said that cost over 200 a months supply compared to 14 for Glentek.

    You can see why...
  17. Thread: Riluzole

    by Sueb
    Replies
    25
    Views
    4,935

    Managed to get a different brand yesterday, but...

    Managed to get a different brand yesterday, but it’s taken over a week to get it. If same happens next month will try try the yoghurt with Glenteck.

    It’s all down to costs, Boots try to avoid...
  18. Replies
    10
    Views
    2,496

    Steve uses Gridpad 3. Once set up to your own...

    Steve uses Gridpad 3. Once set up to your own requirements it works really well. Steve played with the settings until he had it how he wanted, but assistive technology did leave you with just default...
  19. Replies
    10
    Views
    2,496

    Hi Sasha Has your dad had a referral to...

    Hi Sasha

    Has your dad had a referral to assistive Technology. They have different options that are available. Steve uses Eye Gaze now, would that be an option for him.

    Sue
  20. Thread: Riluzole

    by Sueb
    Replies
    25
    Views
    4,935

    Terry will see what we get on Tuesday but if can...

    Terry will see what we get on Tuesday but if can only get the Glentek will try the yoghurt.


    Sue
  21. Thread: Riluzole

    by Sueb
    Replies
    25
    Views
    4,935

    Riluzole

    Is anyone having trouble getting any brand of riluzole other than Glentek. Have been trying for a week. We are on second chemist who are trying for a second time with a different supplier. First...
  22. Thread: bereavment

    by Sueb
    Replies
    30
    Views
    6,211

    So sorry to hear your news Dave. Thinking of...

    So sorry to hear your news Dave.

    Thinking of you and your family at the this sad time.

    Steve and Sue x
  23. Replies
    7
    Views
    1,494

    Hi Sarah Steve finished work 6 months after...

    Hi Sarah

    Steve finished work 6 months after diagnosis. He started to write a story about his dads life, which he had been collecting information for years and was always something he wanted to do....
  24. Thread: Merry Christmas

    by Sueb
    Replies
    24
    Views
    5,016

    Hope you all had a lovely Christmas. Best wishes...

    Hope you all had a lovely Christmas. Best wishes for 2019

    Sue and Steve
  25. Thread: Sad news

    by Sueb
    Replies
    19
    Views
    3,112

    Sorry to hear off your loss out thoughts are with...

    Sorry to hear off your loss out thoughts are with you

    Sue and Steve xx
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