Page 3 of 12 FirstFirst 12345 ... LastLast
Results 21 to 30 of 118

Thread: Onwards And upwards

  1. #21
    Forum Member
    Join Date
    Apr 2015
    Posts
    414
    Dear Joycie,

    I am very pleased that things are looking up for you after what sounds like a rather difficult patch it is very good that you are able to be so positive and be able to look forward to the future.

    All the very best,

    John x

  2. #22
    Forum Member
    Join Date
    Mar 2015
    Location
    Worcestershire
    Posts
    224
    Joycie you are so positive you inspire me to be too, when Dave has a good day i encourage him to make the most of it, and we get in the car and just go off, he is happy to go for a pub lunch in a quiet country pub, he does not like noise or a lot of people talking in the background, his hearing is not as it was although he will not admit it. Tomorrows another day keep smiling Joycie, we are smiling picturing you in that mantra. Love to you and Peter, enjoy your date with Barry and Sue, tell Peter Happy Birthday xx

  3. #23
    Forum Member
    Join Date
    Mar 2014
    Location
    lincoln
    Posts
    1,759
    John,

    we have had a procession of friends and family who are all travelling off here and there for holidays, just as we would have been, if things were different

    I have just written to one of my pals to say what we all say
    "You have got to make the very best of what you can do, and don't concentrate on the things you can't do!
    I just realised today how very true it is!

    For two weeks, I havent Been out of the house cos I can longer manoevre in or out of the cars. On Monday I can get in the WAV
    I know there is a very good case going in for chc
    I know there is a ceiling tracking hoist coming
    Peter is getting respite care
    Everyone is just offering help, all of a sudden

    I just feel happy

    I did think to myself today that, when the grim reaper comes to call, Peter can get out and go all the places he wants to - and I have been convinced by absolutely everyone in my own family and circle of dear friends that they will look after my daughter and grandson

    I suppose I just feel better and I have just put my head above the parapet again!

    Now, i have only to convince him to just plant out my last dozen trailing pansies and that will bring down the curtain on a good couple of days

    And, come on, the All Blacks

    Much love

    Joycie xx

  4. #24
    Forum Member
    Join Date
    May 2014
    Posts
    394
    Hello Joycie,
    It's good to hear you are getting some good help. We are looking at getting a wav, did you buy or rent one? I'm thinking of long term rental. . Kev has an electric wheelchair now, just in the nick of time. Hubby fell and I had to call paramedics, they used a cushion that pumped up so we could manoeuvre into his chair. We are now waiting for a visit from the "fall team" so they can make sure I have the furniture set up optimally. Never heard of this team before now but I say yes to everything as I worry I get things wrong. Now my hubby is off his food, still refuses a peg but he says he is not hungry. It's so worrying, I can't force him to eat.
    hope you enjoy getting out and about in your new wav, bet you are so excited, the autumn colours are very spectacular this year so do go everywhere you can Joycie and hope Peter has some good rest time getting out and about too.
    Take pics of your garden so you can look back on it during the winter.
    Take good care of yourself Joycie.
    sylv xx

  5. #25
    Forum Member Dude's Avatar
    Join Date
    May 2015
    Location
    Merseyside
    Posts
    2,611
    Hi Sylv 1 word 'Ensure'. Dude xx

  6. #26
    Forum Member
    Join Date
    Mar 2014
    Location
    lincoln
    Posts
    1,759
    Hello syvlia

    We wanted to lease but everywhere Peter rang only did motability or wanted up to 1000 quid a month. Ridiculous money. So we were recommended by another MND patient to a local garage and bought one. My daughter has a business ferrying people around from hospital to hospital so it will eventually go to her

    I have real problems transferring from riser recline chair to the wheeled shower chair. I either try and get my feet to point in the right direction, and manoevre around or Peter hauls me up. Neither is really advisable. In the morning, Peter and the carer transfer me by mobile hoist but it is not advisable for him on his own. That Is why we need to get on with the ceiling tracking. Why don't you make urgent enquiries about that?

    Dude is right about ensure. I took fresubin for about a week when my appetite disappeared. Of course I have the peg and we are just ordering In emergency feeds in case it happens again, or Peter isn't up to cooking! Think about a feeding tube! I know kevin doesn't want one.......! But with the fresubin,I didn't feel hungry at all. Have you got a dietician on board? Ours is marvellous

    You just have to start building stuff around you. Things deteriorate so quickly sometimes.

    We have loads of flowers in for colour for the winter. It will be good for photos

    Lots of love


    Joycie X

  7. #27
    Forum Member Dude's Avatar
    Join Date
    May 2015
    Location
    Merseyside
    Posts
    2,611
    Hi Sylv Get down the chemist and get a few different flavour Ensure plus or 2cal. Strawberry is best. Just sip it, don't neck it all in one go, it's not tequila lol. Very filling, I have never felt hungry and have been 100% Ensure for 18 months. Weight never varies 85kg. Dude. x


    Joycie You can get a swivel thing for on the floor to safeguard your ankles or a 'lazy susan'. Dude x

  8. #28
    Forum Member
    Join Date
    May 2014
    Posts
    394
    Quote Originally Posted by Dude View Post
    Hi Sylv Get down the chemist and get a few different flavour Ensure plus or 2cal. Strawberry is best. Just sip it, don't neck it all in one go, it's not tequila lol. Very filling, I have never felt hungry and have been 100% Ensure for 18 months. Weight never varies 85kg. Dude. x


    Joycie You can get a swivel thing for on the floor to safeguard your ankles or a 'lazy susan'. Dude x
    Hi Dude,
    It's my hubby who has lost his appetite, he won't have a peg and he won't be cajoled into taking a food substitute. Fortunately he carries a few pounds but they will soon roll off.
    He is on patches for excess saliva, I was hoping that once we got that more under control he would feel more like eating as eating and drinking sent him into a drooling frenzy. The patches have dramatically reduced the saliva but still no appetite.
    We have a lovely male Macmillan nurse so I have left him a message in the hope he might be able to talk him round to see a dietician.
    Hubby says he just is not hungry and puts that down to the fact he hardly moves around. He loves his TV in fact on average he loves it 19 hours a day.
    I am a decent enough cook and would cook him spit roasted wild boar if that's what he wanted but nothing I suggest whets his appetite.
    If someone in an official capacity says do this, he normally takes their advice unless they talk about a peg then he gets mega hacked off.

    If you suffer with saliva problems
    what do you like to eat?
    We need a lazy Susan to help him transfer from electric wheelchair to rise and recline chair, where do you get the lazy Susan's from ?

    Funnily enough as Joycie needs equipment we seem to need the same, I am looking at hoists but not Ceiling ones and we are also looking at WAV options.

    Thanks Sylvia

  9. #29
    Forum Member
    Join Date
    Jan 2011
    Location
    Northamptonshire
    Posts
    1,094
    I know this will sound crazy but how about using the rollator to hold onto when transferring from recliner. Place the commode at right angles to your chair, put the rollator in front of you, you can then shuffle round, using the rollator for balance. Would also work from wheelchair to recliner.

  10. #30
    Forum Member
    Join Date
    Mar 2014
    Location
    lincoln
    Posts
    1,759
    We will try it, Miranda.

    I just now put the wheeled shower chair in front, stand up and ry and shuffle around for 180 :degrees. The trouble we have is that the right foot sometimes refuses to move and, if I am too much time on my feet, my legs give out. Or Peter wraps me up in a bearhug and physically transfers me. It is the worst problem we have. I wil ask Peter to get the rollator and give it a go.
    Love

    Joycie. Xx

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •