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Thread: Lining alone#2

  1. #11
    Forum Member Terry's Avatar
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    Hi PT;

    Sorry to hear of your struggles and not making any headway.

    From a useless, Terry

  2. #12
    Forum Member Lynne K's Avatar
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    I can understand your fear of getting out with your walking frame Panniertank. I've been there even though I've got a partner. I've been stuck in myself for a couple of weeks, other than one day out to the 10k. Actually I was fed up before the 10K. That's not like me at all. I normally keep upbeat.

    It might be a good idea to get a motability car on one of their leases. At least then if you had to give up driving in the future they'd pick it up and give you something back from your contract. You could sell the car that you have now and maybe use any profit for your up-front fee on a suitable WAV. Lots to think about I know. I hope that I haven't caused you even more stress.

    Good luck with having a more relaxing day soon and hopefully you can get a powered wheelchair soon and a ramp so that you can get it out.

    Hugs, Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  3. #13
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    Thank you for your feedback and suggestions Lynne. My house has a sloping driveway and that is one of the complications about whether to build an extension or convert the garage etc. A ramp for wheelchair access might take up a lot of space and might even take away the parking spaces. So getting a powered wheelchair and fitting a ramp wouldn't be straightforward;- nothing seems to be!!
    I am sure you are not useless Terry. I feel I am. Like I have said before, I was burned out and struggling to cope with life before my symptoms started and I had been through several life changing events. I struggle to cope with change and the changes that MND are bringing are terrifying. If I was a pannier tank i would be scrapped!!

  4. #14
    Forum Member Lynne K's Avatar
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    Hi Panniertank. I have a ramp to the right of our front door. It starts sloping to the left to join the steep path down to our car. It's a serious challenge with my best walker, the Topro, and too dangerous with my lightweight one. My powered wheelchair manages the slope but to come back up I have to put speed on and stop immediately at the top before I hit the flat wall in front of me. But I 've coped so far with some trepidation.

    I guess having a good ramp is more important than parking spaces. Unless you are able to have a ramp at your back door. That's if you'd be able to get around the front ok. Good luck with sorting something out. Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  5. #15
    Forum Member Lynne K's Avatar
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    Duplicate deleted
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  6. #16
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    Hello Panniertank,

    So sorry you've got to make such difficult decisions on your own. It's not surprising you feel anxious , especially as you dont feel safe to go out with your Walker.

    As Lynne suggests the ramp is possibly more important than parking although obviously this is your choice. I use a power wheelchair and our car is a WAV , which I use my mobility allowance for. I resisted this until I couldn't go out safely or get out of a normal car and then it all became a mad hurry ! I have much more freedom and I feel safer in a wheelchair so I would gently suggest looking ahead ( which I didn't do ) to make life easier and safer for you. You don't have to use a wheelchair but it's there if you're tired or are having a wobbly day.

    Good luck with everything Panniertank, I do think this stage of MND is especially hard and scary because you haven't quite got the things in place to make your life easier and there are lots of tricky decisions. I really hope the health care professionals are supporting you.

    Love Debbie x

  7. #17
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    Thank you Lynne and Debbie.

  8. #18
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    Hello like I have said many times I struggle to contend with my diagnosis of MND and I am often in denial. It has ruined my life and it is difficult living alone with it. I hate being housebound so I started going to a palliative care day unit. And I used a special company to take me out in a wheelchair car to visit my mother in her care home. I was going to use them to take me to favourite towns or countryside in the spring. But now I can't believe there is coronavirus to contend with as well. It is going to ruin my attempts to make the most of my life with MND. I can't visit my mother because that care home like all others is stopping visitors. Because of my underlying health conditions ( MND and AS) I am going to have to self isolate and be housebound, probably for several months. So this week I felt I had to stop going to the hospital day unit. I am sorry that coronavirus has killed so many people. And I am sorry that that the youngest uk person died due to coronavirus this week and he had MND. Very concerning. Like I said before, horrible and so cruel that there is coronavirus to contend with on top of MND.

  9. #19
    Forum Member nunhead_man's Avatar
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    Good afternoon

    Tell me about it!

    We are having to move because the place we live in is not suitable for me eventually being in a wheelchair and of course we are now in Covid 19 hell with regard to the various pieces of the puzzle that need to be put together to allow us to complete on our sale and purchase on the same day.
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  10. #20
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    Sorry Andy that you are going through all that and you are now in covid19 hell. Tell me about it?? If you mean about houses etc in the past 5 weeks there have been builders converting my garage to a downstairs wetroom and converting my patio door to be wheelchair accessible and building a ramp outside the door. Hopefully they will finish the work this week and it is going to cost me about 20k. Hopefully it will allow me to stay in my home for as long as possible as I become more disabled. But the doors are wide but not as wide as my OT suggested etc.

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