Matt’s battle with MS

The first sign was during a family Sunday dinner in 2014. Matt said “My hands feel a bit numb”. He had no other symptoms and nothing was apparent as an effect of the numbness.

However the progression was relatively rapid and by 2016 Matt has moved from crutches to a manual wheelchair. In 2018, just after moving back home he needed a Powerchair and could not longer use stairs. Fir Tree Cottage has a stairs with a half landing and at that time, maybe still, I haven’t checked recently, funding was only available for straight stairs …………….. however South Worcestershire does have a really bad reputation for access to funding compared to Herefordshire (and most of UK).

So I started building/adapting anything I could to make our home and Matt’s MS work together.

I have an engineering background and have worked as a factory Safety officer and First Aid responder. These make it relatively easy for me to know, not only how to design and make something BUT also to know when I should NOT do it and recognise potential dangers. Anything you buy that has a “Disability” label is very expensive but, especially with a more vulnerable user, you can’t cut corners. Please don’t attempt to replicate any of the work I have done for Matt unless you have the right skills.

While Matt was in a manual chair he could “shuffle” up the stairs on his bum but as his strength declined a Power chair and stair lift became essential. Products for curved stairs are made to order individually and, as all “Disability” products, are VERY expensive. I had to buy three separate ones to get the bends and parts I needed BUT as no one will fit second hand units (Heath and Safety etc) they go for peanuts on eBay. I didn’t pay over £200 for any and one was £50 (I removed and collected it) and, sadly, due to bereavement it had only had a few weeks of use. I had to cut/weld a few bits but it still functions (although Matt can’t use it now) 4 years later. It’s a real problem that older units can not be reused to provide affordable systems for those without the money for a new one, but the manufacturers will not supply parts or service for them so they have no resale value. No one could risk fitting them on a commercial basis as there could be no liability cover without manufacturer support.

I had already fitted hoists in Matt’s bedroom and the bathroom/toilet. Once we had the stairlift for Matt I fitted a hoist from the top stairlift park position into his bedroom and direct to the bed. This hoist was Alexa voice controlled so, for a few months Matt could get himself out of bed, onto a manual chair, wheel (actually he dragged the chair along with his hands using wall/doorframes etc) himself into the bathroom. Again these hoists were all eBay sourced and I fitted/altered them as needed.

While finding hoists for the house I collected enough components to equip Matt’s extension with a full H frame hoist, covering the bedroom and wet room area. It seemed daft to increase the Public Purse cost of the project, when I could so easily do some of the work myself ……………….. BUT the powers that be vetoed the savings because of Health & Safety. I even tried to give them the rails to use. which clearly have no moving/wearing parts but that sort of thing requires common sense, which Council systems do not recognise !!

It tool three years and a lot of stress to secure the Council funding for Matt’s extension but, of course, it IS public money being spent. Having said that, the procedure is flawed in many ways. I was constantly wondering how a less able person than Matt and one without the support Ros and I can provide could ever end up with a suitable space. The extension gives enough room for a bed and profiling chair, allowing room for Matt to manoeuvre his wheelchair to and from the main house kitchen and a wet room area with shower and toilet.

The initial Council proposal was for Matt to use our 3.6m by 3m sitting room as a bedroom and build a 2m by 2m extension as a wet room. Totally ignoring the need to manoeuvre a wheelchair or use a hoist. They said storage space for clothes etc was not relevant and that Matt didn’t need space for a profiling chair, despite the Council Wheelchair service telling Matt he must not stay in the wheelchair for more than 6 hours a day. Their solution was for Matt to just stay in bed., oh and Ros and I would just have to use the kitchen as our living space !!

The wet room is a bit tight for wheelchair use with the shower/commode chair but it works. It was a nightmare getting the Council to provide a space that would work AND that allowed Matt independence as well as being a “nice” space. It tool three years to complete the project and a lot of “discussion” BUT we have to accept that it is Public money so restrictions have to be accommodated. What we ended up with, with a bit of follow up adaption and modification be ourselves is great. It is fully hoist accessible, has a “Japanese” style auto wash/dry toilet (with added voice control). Blinds, fan system, TV positioning wall mount, external and internal doors, lights, all voice controlled. Matt has easy ramp access to the garden and now he as (well, in November 2024 will have) a more suitable powerchair allowing access to the lane for walks and to our neighbour’s field for BBQ’s.