Dont need to be in a rush for anything 😳
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Last April, I submitted an application for funding for either a ramp or a porch lift. It took three months to receive a reply. Denied, as I didn’t meet their “risk assessment”. At that point I was two weeks away from not being able to get back inside the house because I could no longer manage going up stairs.
LindaB I really hope things get moving and you get your stairlift. 💞Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.
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I've asked for funding for outside stairlift but have been asked to find out about leasehold on flats first. Not that I see that as a problem because these flats own their leases. I think its going to be a no. I'm so worried that after daycare tomorrow we will be stuck outside. No idea what we will do if that happens!! 🤔when i can think of something profound i will update this.
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denise So, does that mean that you either have to move or (soon enough) Stephen will be stuck inside and won't be able to attend daycare etc? xxDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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I'm not moving because once I cant get Stephen in and out of a car we wont be going anywhere anyway.
He can still walk, get about and I don't see that changing much. I'm aware hes tired after day care and a chair lift would help and more convenient than a stair crawler. Once I get the crawler down stairs and him in the car, and hope he stays there, I've got to get the crawler upstairs and inside. Then reverse the procedure once we get home. I live with him and I'm aware of his abilities and yet I'm being dictated to by others that haven't seen him. His mnd isnt like everyone else.
We've had 6 months with the indoor chair lift and its been brilliant and at no time did anyone suggest we should have one and did that off my own back.
5 years ago it was suggested he had 3 years. Hes still doing well and I'm keen to get him out while I can.
If we move, and believe me housing options are well there's nothing. I don't want to move elsewhere. I've just figured out where I am, neighbours are lovely, Stephen loves the flat and so do I. At a time when we are all worried about finances, we own a washing machine, 2 beds, Hoover, and 3 cats. How could we even afford to move? I've got enough stress.
🙁when i can think of something profound i will update this.
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My son has asked fellow flat owners if the will mind us fitting an outside stairlift. They are thinking about it!! I'd like to point out that it will hardly detract from the beauty of the place because it's a friggin mess. I don't know what my plan b is going to be. Is there disability rights that could argue this one? If we do have to move into more suitable accommodation it wont be near here and we would have to start all over again. Ok it could be better but I have to say I'm not looking forward to the upheaval. So we await a decision. 🙁when i can think of something profound i will update this.
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Originally posted by denise View PostMy son has asked fellow flat owners if the will mind us fitting an outside stairlift. They are thinking about it!!
Oh that would be great Denise - are there many outside steps?
Knowing what you have gone through, and are still going through, to end up with the paltry services being offered for Stephen, I dread the thoughts of you having to start from scratch - actually, it could destroy you 😪😪😪
Please neighbours, be compassionate 🤗😘Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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