Future proofing

[esj20]

Hello all and I hope this finds everyone as well as can be bloody expected! ( given how much this bloody disease affects the diagnosed and those close to us )

does anyone believe in future proofing? I’ve been diagnosed for over a year officially but, like many others we suspect this bugger of a disease has crept up. Long ago with its head lights dipped!

My wife and I decided to future proof;

Profiling bed ✔️

Electric ejector seat ✔️

Bed rails ✔️

Wheelchair van ✔️ ( too soon I know but handy for my electric with dog in tie )

Wallace and Gromit ‘ get you out of bed, dress you and make you breakfast machine thingy ✔️ ( ok, that’s a lie but wish it wasn’t)

From climbing mountains a year ago I now struggle to conquer mole hills but, mind you I’ve seen some big bloody moles!

In all seriousness I do struggle walking any distance and literally freeze in crowds so, after much discussion we decided the revolution must be motorised and decide to invest in an electric wheelchair.

I still walk as much as I can and, the funny thing is I can cycle nearly 25 miles on my recumbent electric trike but cannot walk more than 3.5km which takes me two and a bit hours! After that I’m fit for nothing. ( I know I’m lucky too to be able to walk that far but it’s now giving me diminishing returns!

the chair will enable me to escape and still take the dog out. I’d use my trike more but it’s a tad unwieldy with a turning circle larger than the QE2

I digress, sorry but does anyone else future proof this way too?

PS ( if any one knows of Wallace and Gromit type contraption suppliers then please let me know?)

[FredaE]

the trouble with future proofing with MSA is that you cant tell the future. do not do anything which will lower the value of your house until you need it

do not do any thing which will stop you doing some thing you may want later.- a through the floor lift for instace may be thwartd by your new wet room being installed in the only place you could have had the lift ....stair lifts ...no as you may get pisa syndrome and then a lift is not safe as you tip over

most wheel chair adapted vehicles are sold still in guaratee thats a good one to buy early. big electricwheel chairs are too big for doors if you are thnking of one and trans ferring can be veery difficlt

voice recording defiitely worth doing and no harm done if you dpnt need it

wet room better then shower as you can access it with a wheel chair (not electric !!!!)

No vat on works for patient but you must get that sorted in advance

[esj20 in reply to FredaE]

hi Freda

We were fortunate enough to be partway through a self build so we adapted the downstairs bathroom into a wet room , tiled floor walls and have my bedroom next door!

I nearly made the mistake of buying too big wheelchair but I had one company visit me and gave me fantastic advice.

I’ve done the voice banking for when I need it too although I do still sound like a Scottish Robot 🤖

Still waiting on Wallace and Gromit type inventions though 😂

Yours,

Alec

[FredaE in reply to esj20]

wallace and gromit a bit too cheesy? i read your comment on voice banks as Scottish rabbit and I DID go to Specsavers...

[esj20 in reply to FredaE]

😂😂😂😂😂

[5456partner]

Hi, my husband was also diagnosed just under a year ago and now looking back there has been signs and various symptoms for several years. He was very fit, but deteriorated a lot last Dec, just before his diagnosis. It felt like a crisis as he was quickly unable to get up and downstairs safely so we installed a stairlift. We've now been told these are not recommended for people with MSA. However I don't know how we'd have survived the last year without it. He can only walk 2 -300 yards with a rollator, and we have a wheelchair for longer 'walks'. However this is pretty impossible to use as we live in a hilly village with terrible or non existent pavements. So, we've recently invested in a lightweight electric wheelchair (having asked for advice and comments on this forum). It is lightweight and splits in 2 to make each bit even lighter, but I'm struggling to get it in and out of our car. Need to fireproof my back! So we're now debating buying a used WAV, even though he can still get into a passenger seat of the car. So difficult working out what equipment or vehicle to buy. Feel we could easily make another mistake as we can't see ahead.

[esj20 in reply to 5456partner]

Thank you for your reply, it looks like most are making ready for the future,

Yours

Alec

[5456partner]

Meant to write futureproof my back!

[Terrier58]

Hi there. My husband has MSA and we have futureproofed a few things as didn’t want to move and have tried to do everything that’s relatively easy to reverse. Voice bank was done early on The OT and wheelchair services have been great with lots of rails and a powered wheelchair ( don’t need it fully yet but it’s there for when we do at no cost to us) Adapted wetroom with shower/ through floor lift into the bedroom/ electric socket to take a hoist/ WAV big enough for powered chair and dogs. My husband can still transfer but it has saved my back no end even for putting the walker in and locking it down without folding it up every time. / modular ramp to get outside. Found an architect to help who was used to doing disabled adaptions and got the OT to sign off the plans. Not a cheap option but probably not a lot more expensive than moving house None of us have a crystal ball but I feel more prepared for the next couple of years at least.

[esj20 in reply to Terrier58]

Thanks for you reply as i dont feel i'm doing too much in fcat ive came to the conclusion you can do too little as you never know with MSA.

Its the trasfer thingy i'm worrying about when the time comes but, i;ll be seeking out my OT's help

Thanks

[Frenchoak]

I've got MSA-C, diagnosed Nov 22, still walking (10 mins max outside before tiring), but concerned that I've had 4 falls the last 6 months. Use walking stick but have just bought a 4 wheel rollator with seat, which is less cumbersome than the nhs one, and it's younger person looking and aqua blue not dingy grey! I also bought a self propel wheelchair. theory being I'll be able to go out more, and further (get a push back home!).

Coincidently, I've been looking at the Mobility Scheme website this morning- they do power chairs and scooters as well as cars. Anyone know the real low down on whether we can drive or not? I've not for over a year now and sold my lovely, nippy Audi A1, but keep getting conflicting information on driving, yeah or nah?!

You were lucky in your timing of house building to amend your plans, we were at the end of a major house refurb and whilst better than the original house, we could have done some things differently if we'd known! Really hope we can stay here, after a year's worth of work!

Good luck, take care and take it steady. Keep doing as much as you can now, living life. Don't forget to sort paperwork issues, make bank accounts joint & utilities bills etc, sort pensions, do LPA etc. Borinv, time consuming stuff but essential too! 😀

Speak again! 👋

[esj20 in reply to Frenchoak]

Hi French,

My body, too, does like a fall over, but apart from a broken tooth, I've been okay; I did manage to take out an entire table at a packed Indian restaurant the other week! Once I got up, covered in someone else's tika masala, I announced, "Panic over, nothing to see and here"

God bless the NHS, but they do a terrible line in coloured equipment; dingy and battleship grey seems the norm.

I know what you mean concerning driving. I still do, but I informed the DVLA, and they issued me with a temporary licence for a year. The criteria appear to be that we have to use our own judgment on whether we are safe or if a health professional deems us unsafe.

Thank you. I'll take it as steady as possible, but with my shakes, at the moment, I'm applying for a job shaking the salt on the chips at McDonald (other fast food purveyors are available)

I signed everything over to my wife, so in theory, I'm homeless and penniless, which is actually liberating. I'm still working part-time, on a consultancy basis only, but come Xmas, I'm retiring at the grand old age of 52!

Keep in touch and keep fighting this dratsab of a disease1

Yours

Alec

[leroybrown]

My wife was diagnosed with Parkinson's in January 2020 which changed to MSA in late 2021, although from her symptoms I was was convinced it was MSA by end of 2020. She has been fully wheelchair bound for past year, permanent indwelling catheter since May, and her speech is very very poor. Computers, laptops, phones very difficult for her to use as her hand control is very poor, but she has been tested to see if eye gaze technology would help and apparently she is an ideal candidate. Hoping to have this in place by end of the year. This is been organised by the Central Remedial Clinic (CRC) in Dublin.

Trike was great for about a year, but no longer possible

Other things we have done / bought that have made huge practical difference include:

Through Floor Lift

Chemical Toilet beside the bed

Paving our small garden

Campervan - could take the trike in the back, and now can get electric wheelchair into it

A Dog - best company ever and brings smiles & laughs every day 😁

Ramps, ramps & more ramps

[SilentEchoes in reply to leroybrown]

🐕‍🦺💕

[SilentEchoes]

I'm future proofing too, my husband is resisting. Denial is a powerful obstacle. We learned this lesson when I fell and shattered my ankle. We now have ramps and a good rollater as well as an entry level power chair. I can still walk but not very far. Do what you need to keep yourself safe and as mobile for long as possible.

My mom lived with PD for 24 years. I thought I had MSA because of the early and prominent autonomic dysfunction. I was diagnosed with MND in 2019. I've been dealing with this 💩 for over 9 years. Keep the faith. Hope is powerful too.

SE

[Terrier58]

oh yes had completely forgotten that our most liberating “thing” is our adapted motorhome. Has wheelchair lift and wetroom and boot for all the other stuff. Don’t have to worry about poorly designed hotel rooms, and even a couple of nights away at a local campsite makes you feel better

[esj20 in reply to Terrier58]

That sounds like absolutely fantastic.

May your travels be many and far.

[Cat-gal]

I feel that future proofing is a good idea. You can get it sorted whilst things aren't too bad at the time so heads are clear of any later sudden panic decisions. LPAs are a must and they take about three months to be registered. Wills can be done free by some solicitors if you are donating part of your estate to a charity.