FND Dystonia update. Wet rooms and stairlifts.

It's been a while since I posted anything at all on here, but maybe it's time for an update.
Jenny's condition was diagnosed as Functional Neurological Disorder back around March, the specifics being Generalised Dystonia. We hoped that with medication it could be controlled, although it was made clear there is no cure at present. Little is known about it, and the medical profession have proven to have no understanding and little compassion or empathy with sufferers of this debilitating condition. Only one GP who has known Jenny all her life has shown any sort of care and tried to help, the rest of the GP practice have no interest, or so it seems.
The condition causes involuntary muscles spasms and contractions, leaving the sufferer unable to control limb movements, with the limbs also locking in painful unnatural positions. This is extremely fatiguing. The medication controls it to a degree, but leaves Jenny tired out as well. She is unable to walk any distance before bringing on an attack. Having tried different medications and even quack remedies and alternative medicines* we are now resigned to that fact that it is not going to get any better, and are adapting the home to make things workable.

So far I have rebuilt the front door step removing one large step and making it into two shallower ones that are more manageable. They are too large however and Jenny can't reach the grab handles that were installed each side of the door until she is on the second step, so that needs a rethink with narrower steps. The back door already has a ramp or sorts, from when she was a childminder, that was installed to allow prams in and out easier, but it now serves as a disability access.
Stairs are now a problem, and Jenny often has to decide whether she spends the day upstairs or downstairs if I am out at work. She manages the stairs on a good day, but is too slow to answer the door - although we have trained our regular postman to wait a bit now - he's a gem, a young lad only about 25 but a proper old fashioned postie, always a smile on his face and he stops for a chat with everyone. So anyhow, a means of getting up and downstairs was needed, particularly if there was a fire.
A straight stairlift is about £1500 upwards. Stairs like ours with a turn in need a wrap around stairlift, which run to around £4000. We also considered a wheelchair lift, as long term it may come to that, but that would involve major work. A lift could, just, fit in the corner of the house currently occupied by the downstairs toilet and go up into what is currently my study/home office. We would then have to look at fitting a toilet elsewhere, possibly under the stairs, although that would involve moving a major supporting wall and losing about a square meter of the kitchen. Or we could remove the stairs altogether and just have a lift, but would then need a fire escape externally. The lifts work off batteries, so in the event of a power cut they will still operate for a limited number of times. The lifts run to about £7000, although used ones are on Ebay for £500 upwards - but then I'd have to figure out fitting it and adjusting the height and drop myself. The building work would take the final bill to around £10000, so a stairlift it shall be. We had a drive down to a specialist disability equipment provider in Hull today, with Jenny able to have a practice run on their demo machine to make sure she is confident on operating it. It sounds silly, but it takes a bit of confidence building to get someone with a disability to use one of those things - the fear of falling off is however greater than the actual probability. There are many microsensors and safety switches that mean they will not trap fingers, run things over or allow operation without the seatbelt on. It took a fair few minutes for her to get in and out of the seat, with her legs refusing to co-operate, but once in operation was simple enough and reassured her she'd be fine using it. If you do have a relative that thinks they need a chair lift I'd recommend they try using one first before you spend money.
Next step was a measure and dry run at home using a dining chair to replicate the stairlift in it's various positions. This highlighted an issue with a radiator in the hall which will need to move to allow sufficient knee room. I will also need to fit another power socket in the correct position as the only outlets are all on the wrong walls, and of course trailing cables are a no no. The chairlift will park either at the top landing or in the hallway at the bottom, which are the charging docks for the batteries, and it folds up to allow people past, the good thing being it won't block the stairs at all. This also means that on a good day Jenny can still attempt the stairs if she wishes, only using the stairlift when she has to and not becoming entirely dependant on it.

Our next pressing need is the bathroom. When we moved into the house 21 years ago it had a simple bath. I installed a corner shower booth then, but later moved the door and removed the shower when we remodelled to a P shaped bath with a shower over. Initially I thought about restoring it back to allow a shower booth again, but Jenny is struggling to step into a traditional raised shower booth. A wet room then seems to be the way forward, but I'm reluctant to lose the bath - I like a good soak and often need one after my racing and mechanic exploits. Fortunately we extended the house and added an extra 3 bedrooms some time ago. One of those backs onto the existing bathroom, with water and heating able to be tapped across. So the plan is to partition that bedroom which is a long L shape to make a roughly 7 x 7 foot wet room with a single bedroom at the other end. To make that work a door and small section of wall will have to move, with a new door repositioned, and there'll be a bit of wiring reconfiguration to sort out switching for lighting, and access to what was the kids playroom will now be through that bedroom. The kids are all grown up now, so the playroom will effectively become an upstairs sitting room and craftroom where Jenny can indulge in her passion of quilting.
The wetroom will have a toilet, a shower and a sink, and the bedroom might even get a small kitchenette so it will be a sort of self contained granny flat. I've yet to get an estimate for the conversion, but it won't be cheap. It will however allow us to stay in the home we love, it's a great house with great neighbours who have been very supportive, and would be more cost effective than moving to a smaller and less family friendly bungalow.

*Reiki massage manages to relax and relieve the symptoms short term helping her relax, but it's not a cure.