thank you

Thank you for the mobility advice, seems like a scooter will not be practical as I thought. when I spoke to the PSPA care advisor she said NHS would not give a wheelchair until he could no longer walk, but maybe F is at that stage now. i will look into what NHS can provide us with, I guess whatever it is will not go in the boot of my small car as easily as the one the hospice has loaned. I cant believe how quickly things are progressing, last October we went on holiday to Looe in Cornwall, it was about a 20-25 minute downhill walk from our accommodation into Looe village, F could do that, walk around Looe and walk back again!

This wretched illness, I guess I'm going to be looking to change cars as well as move house!

Lots of Love


10 Replies

  • Hi Debbie, if the hospice have loaned you a chair, then I see no reason that the NHS won't get one for you.  The one S has got, is virtually the same, if not lighter than the ones at our hospice!  Get on to your OT or the GP!  As for the car, you and me both!  S went off to hospice this morning in a specially adapted vehicle,  looked pretty grim, not sure I am ready for that yet, even if he is getting pretty close to it!!!

    How you doing?????.

    Lots of love


  • Oh where do I start!! Just too much going on, I need to sort out mum and dads affairs, don't want to be a stranger to my new granddaughter, but had nice cuddle today and I got wind up that nobody else has done!! And things I need to sort out for F piling up and he feeling neglected! I need a holiday!! With a powered wheelchair!! How are you?

    Lots of love

    Debbie xx

  • Looking forward to my next respite!!! Trying to book to go away somewhere hot, but struggling to get the enthusiasm, knowing S won't be with me.

    Lots of love


  • Hi Debbie, sounds like you are having a tough time having to organise and cope with your changing situation. Ben is still managing to hobble about but we are now looking at walkers and wheelchairs to keep him safe. At the moment I am his walking aid but he still tries to tackle unaided walks around the house and garden when I'm not aware! I am trying to persuade him to go to the doctor regarding a chesty type cough, pretty sure start of an infection. He is refusing and is adamant he isn't going to get treatment for it even though I have warned him it could develop into pneumonia. He said he doesn't care and said he wishes he could have a heart attack so that he doesn't have to face the future that is ahead of him. Don't quite know what to do! Anyway less of my woes, hope you get things sorted out you sometimes feel that it would be lovely for someone to take over and organise everything for you. Love Kate xx

  • Hi Kate, that must be tough for you if Ben is refusing to see a doc, and saying things like that, but what do you do? It's difficult to force a grown man to do something they don't want to! 

    Love Debbie xx

  • Debbieann

    When D was at about the same stage as your husband, we changed the car for a larger hatchback style car that I could fit the folded manual wheelchair in more easily.  Unfortunately this stage did not last long and within a few months I was unable to transfer him safely from wheelchair to passenger seat.  At about that time we also got an electric wheelchair.  We then bought a secondhand wheelchair adapted vehicle with a ramp at the back so that D can travel in the car in the wheelchair and does not have to transfer.  I had to sell the larger hatchback and did not do well on the deal financially as we had only had it a few months.

    Of course each PSP sufferer experiences a deterioration in mobility at a different rate and hopefully your husband will stay mobile for much longer, but do try to plan for the future as much as you can, especially when making an expensive purchase - we didn't get it right. I had expected the other car to be suitable for at least a couple of years.

    As regards powered wheelchairs, have a look on eBay.  We bought the original one we had on there, almost new, from someone who didn't need it any more and it was great for a while until D needed one with more support.  I am selling that one now as we don't need both and I will be listing it on there.  It is an Enigma Energi.

    Vicki x

  • Thank you, I don't want to go down the road of keep changing cars, as you say they are an expensive purchase, and how the illness progresses is so different for everyone, and F seems to be in rapid decline at the moment! And I'd like to go out together without thinking it's too hard work to be enjoyable! I know it's going to be hard work from now on, but somethings could make it a bit easier!! 

    Debbie xx

  • Debbieann I agree changing cars is stressful but as you say mobility changes so quickly.  I tried for too long lifting heavier wheelchairs into back of the old car, hurt my back.  Best thing I did was buy a secondhand WAV with ramp for wheelchair about a year ago, not using much at present M in a home, but I would recommend getting one as it is so much easier to take M out shopping, visits to see friends etc.  Also a fantastic vehicle for getting bulky things to the tip, moving furniture etc.

    Get your GP to recommend your hubby for NHS wheelchair service now as his mobility is so impaired it will only get worse and with the waiting list it will probably much worse by the time you get an appointment.  Remember to emphasis his mobility or lack of it on a bad day.

    Best wishes Tim

  • Thank you 

  • Hi concerning wheelchairs have a heavy one but killed my back every time we had to take my brother out, got a transfer chair so light and not heavy, now the heavy one is just used for home, put his helmet on every time we have to get him up,he does not like any of us to stand behind him when peeing I turned away he fell backwards and his whole head went threw the wall, thank god for the helmet he was not hurt. Everyday a something new.             NETTIE

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