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15 years on....

I’ve not been doing too well lately. I can weight bear to transfer, but it’s getting increasingly difficult to get to my feet to do so. I pay for a specialist neuro physiotherapist to try to hang on to some mobility. These lockdowns have had a massive impact on my mobility, being stuck at home, I’ve not moved around as much as I used to. But I’m not complaining, it had to be done.

In 15 years I’ve been supplied with a bed handle, crutches, perching stool, foot up brace for dropped foot.
I’ve had four wheelchairs, I had an NHS voucher for £280 towards the cost of the second one, which I’ve replaced at my own expense twice since then. A community OT assessed me for a Musmate for dropped foot a few years ago, as it happens it wasn’t suitable, but she said as I pay for physio (not as an alternative to NHS but because the NHS doesn’t provide it) that makes me a private patient, so I’d have to pay for it myself!

This disability malarkey is expensive. It’s cost thousands to adapt our bungalow with ramps, wet room etc. Two years ago I bought a small powered chair to get around indoors, and a couple of weeks ago I bought a bigger one to try to recover some independence by going out alone. I’ve also just bought a freeway riser, which when I’m struggling my husband can get me up from a seated position single handed.

The time is coming when I’ll need to be hoisted by two carers. Will I also have to buy the hoist?

I appreciate how lucky I am to be able to afford all these things, I worked full time for over thirty years and paid into a very good pension scheme, and I’m in receipt of PIP. At the moment I only have carers a couple of times a week to give my long suffering husband a break which I have to pay for in full. No doubt in time I’ll need more.

Thanks for reading. I just felt the need to talk!

Hi flowerpot, I’m so sorry you’re feeling so low at the moment!

Im afraid I have no advice, just want you to know I’m listening!

I also have found I’ve slowed down due to lockdown, I thought it was my imagination.

Im lucky that I’m still able to work, but don’t know for how much longer!

when I went back after furlough I find I have to allow more time to get ready. I can’t lift my legs hardly when walking from my car even with my stick. I was slow before but now even slower nearly to stopping!!

Hopfully will improve with time?!

anyway best wishes Kim x

Hi Flower. Well I’m where you are now, but in six years. Diagnosed in 2015 in a weekend (!) aged 55, I came out of hospital needing a crutch, then a walker, bed handle, toilet frame, then a chair for outside. In the last twelve months I’ve been assessed and given a hoist by my OT, provided free of charge thankfully by our health board. I live in the Irish Republic. I’m not using it unless things are really really bad. I was also provided with a Freeway Riser to stand up from my ricer/recliner chair and get up from the bed.

We had to have an extension to our bungalow to add a wheelchair accessible bedroom and bathroom. The original rooms weren’t able to be adapted. We were blessed to be awarded the maximum grant (€30,000) and were fortunate to be able to fund the balance. I haven’t been able to drive for around four years now.

My husband is my full time carer and does pretty much everything. Certainly everything to do with the house and domestic things. I have help getting up, showering and dressing five mornings in the week.

I’m amazed at the difference between Ireland and the UK with what help is provided. Have you been assessed by a physiotherapist and OT at all?

Hi. Yes I’ve two assessments by community OT and physiotherapist, both after being referred by the ambulance service after falling. The first one got me the crutches, bed handle and perching stool. The second about five or six years ago got me the advice that I needed ramp and wet room, along with the words, “it’s major building work, so it’s means tested.” I heard nothing more for weeks, my phone calls were not returned, she seemed to have decided I wouldn’t be eligible. So I made a complaint and they carried out the means testing. The amount I would have to spend on essential adaptations before I was eligible for help was eye watering, and a good deal more money than we had in savings!
I sometimes think if I’d smoked, drunk or drugged my way to I’ll health I’d get a good deal more support.

However, must try not to grumble :slight_smile:

(I’m 64, diagnosed aged 49)

Hello, thanks Kim. Definitely not your imagination. Best wishes to you too xx

Continuing the discussion from 15 years on…:

Can’t see anything beyond the words continuing the discussion 15 years on…

It’s probably just me being a technophobe.