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Thread: Changes are afoot.

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  1. #1
    Forum Member Lynne K's Avatar
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    Nov 2017

    Changes are afoot.

    I had my 3 month check at the MND clinic in Salford today. My neurologist was happy with me, as always. My breathing tests and bloods were good. But our discussion about how my walking has become has brought up big issues.

    I've fallen a couple of times this week, not badly but it's very difficult to get up. She reminded me of the bad fall that I told her about last time.

    To avoid falling I've been having to lean into my 4 wheeled walker. But it's making my arms sore since all of my weight is on my arms. It's not stopped my falls this week. I decide yesterday to not walk to our car any longer (downhill) as it feels too risky.

    My neurologist and my husband ganged up on me (in a light hearted way) to convince me to use my powered wheelchair all of the time. They both referred to my fierce independance or stubbornness as Steve calls it. But I'm not stupid so have reluctantly agreed with them.

    I have problems with this because my wheelchair won't fit through the gap to our kitchen. The doorway is wide enough but a unit is on the left and our fridge/freezer is on the right, between them making the gap narrower. There's no room to move the fridge/freezer. The kitchen is tiny. But I currently do my own breakfast and lunch. I use the microwave for porridge and make sandwiches lunch time. Steve cooks our evening meal mostly.

    So using the powered wheelchair could take away my independence and I'd be starving hungry waiting for Steve to get up to do my breakfast. I'm usually up a couple of hours before him.

    I refuse to be defeated. So I've ordered a very small microwave that will be placed on our table in our front room. Then if everything is left ready for me I can continue to do my breakfast. I might get Steve to bring me in sandwich making things so I can keep doing that.

    Our bedroom is another challenge. It's super difficult to get my wheelchair in and out. But could work better if some changes were made.

    Good news: My neurologist agreed to put my name forward for a trial starting in January. It's with an existing cancer drug. So if it's successful it could be brought to a treatment stage more quickly than a new invention.

    I'm off to get ready for bed now. Good night all. Lynne
    Last edited by Lynne K; 12th December 2019 at 07:16.
    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.

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