Phil's Disability and Related Issues

[Philip Ayres]

Some decisions need to be made relating to the house and my disability.

For those who don't know, and there might be someone, I suffer from a neuromuscular condition called Charcot–Marie–Tooth disease (CMT) en.wikipedia.org/wiki/Charcot%E2%80%93Marie%E2%80%93Tooth_disease

The muscles in my body are wasting away limiting the amount I walk and stand, affecting my coordination and a hos of other things.

Stairs are becoming a problem. Down is almost always on my backside, up ...... is frequently a struggle, especially when tired and in pain.

So we looked at having a stairlift put in a few years ago but for various reasons including angle of stairs and how I sit, this isn't terribly practical. However the issue has moved on a bit so this week

Jun 5, 2018 11:51:22 GMT Philip Ayres said:

Occupational Therapist in this morning, to talk about stair lifts. The focus of the conversation very quickly turned to a through he floor lift and it all got very scary indeed.

We have a number of options:

1) Do Nothing

Not really an option. At some point I will be unable to climb up the stairs and the bathroom, only loo in the house and my bedroom are upstairs

2) Extend and/or modify downstairs to include a bedroom and bathroom

Possible, but will need money. Conservative estimate £30K

3) Have a through the floor lift fitted.

As suggested by the OT above. Not even on our list of possibles before this week. This could be done from library up into bedroom but the details are a bit sketchy as to where and how much space it would take up in both rooms. Someone coming out to talk to us soon. We believe, thanks to getting Employment Support Allowance (ESA), I would be eligible for a Disabled Facilities Grant (DFG) to help meet the cost. It would affect the value of the property and would probably need putting right before we sold and moved.

4) Move to a Bungalow

Long term this is probabkly the best option. Short term it's beyond our financial reach. There are lots of bungalows locally but finding one big enough for all 3 of us and what we (I) own will be difficult. Liz's Mum & Dad live in a bungalow nearby and that's not big enough.

At the same time we've got issues arising from my mobility. The amount of time I'm out on the days I manage to get out is plummeting, I'm getting tired and in pain a lot quicker. The condition is "use it or loose it" so I'm reluctant to give up trying to walk. I have a manual wheelchair but I'm unable to self propel: it's main function is to live in the back of the car and rescue me when I need it and am unable to walk.

At some point I will need an electric wheelchair to use when I go out and we will need a new car that can fit one. Friends of mine in London have been singing the praises of the Motability scheme which I think we will look at.

[blueshift]

All the best with that Phil :/

[The Doctor]

I stand ready to assist with the loft!

-Ralph

[browny87]

we can help you move if required!

My fiancée's dad uses the motability scheme instead of his DLA and it saves him a fortune, brand new citreon Picasso every 3 years and all mot/service/repairs included.

he fell off a ladder at work years ago so cant walk properly!

[Philip Ayres]

Fall on a train today. Sadly not an uncommon thing, and I can see why it's an issue: two steps up, forward,turn,forward and stop is a few too many things a bit too quickly.

The stop bit is in order to tip some lounging business man out of the priority seats, which I need because I physically don't fit in standard seating.

Yes it was a busy train(had intended to be on a later less busy service) but that had been cut due to some works the next few weeks.

Would hate to loose the ability to do train travel but I may need to start being even more careful about which service I'm on when. And possibly booking priority seats in advance.....

Now I'm a disabled railcard holder, have been for 25ish years. I go and book online using it, I say by the loos and it still sits me halfway down the carriage. You'd think a disabled card would automatically trigger the priority seating?

[chrisl]

Really sorry to hear things are progressing negatively Phil. I think that focusing on a bungalow would be your best option - would you be able to move further afield if it made things more financially viable?

[Philip Ayres]

Occupational Therapist demonstrating inflatable lifting equipment talking about different power levels/inflation. Uses the phrase "shall I go up to four on you" at which point Liz and I both loose it! #MeanMachineAngel

[legios]

Jun 25, 2018 14:05:02 GMT Philip Ayres said:

Occupational Therapist demonstrating inflatable lifting equipment talking about different power levels/inflation. Uses the phrase "shall I go up to four on you" at which point Liz and I both loose it! #MeanMachineAngel

*Kronk, kronk, kronk*

Karl

[The Doctor]

Phil had to explain it to me. I feel fanboy shame.

-Ralph

[Philip Ayres]

This morning will need some processing.....

Due to space issues a "through the floor" lift will need to be put in the front corner of the front room to go up into the front bedroom..... which is a far from ideal situation as I have trouble sometime getting from back bedroom to bath room at night.

However....

Having been accessed for this any Disabled Facilities Grant could then be used towards a modification of the house that would help me achieve the necessary accessibility. So - and for the benefit of those that don't know our house I've taken some photos to illustrate, excuse the mess - the proposal is that the downstairs lounge would become my bedroom. A wall would go in a straight line between the kitchen door and the edge of the front window, meaning the kitchen could be accessed without going through my room.





This would probably also involve taking out the existing wall between hall & front room



The chimney breast, behind the sofa, would come out to give me more room







The library would then become a bathroom, regaining the bit chopped off at the far end by the back door. We'd retain the existing door at the current lounge in, possibly putting a new one in the end...



Most of the kitchen would remain the same, with the sink probably moving to the left over where the entrace to the back door alcove is.





The kitchen's rear wall would go opening onto a new living room/dining room in an extension at the back of the house probably reaching about as far as the existing decking does



(Excuse the old rabbit hutch debris)

[Grand Moff Muffin]

Jun 26, 2018 16:44:52 GMT Philip Ayres said:

This morning will need some processing.....

Wow, you're not kidding. That's some major reconfiguration you're talking about. But the house has to meet your needs! And extensions do tend to add value.

Martin

[Philip Ayres]

We'd discussed how we might extend before but today in the wake of the meeting we got down to the nitty gritty of how we'd do it. Shoving a couple of boxes round the living room gave us a better idea of space...

[Fortmax2020]

Just checking... this is for you and not the rabbits?

[Pinwig]

That's one heck of a plan! Nice work!

[Bogatan]

So my first thought was "Will Phil still keep Transformers in the library once it transforms into a bathroom?"

Otherwise that does seem like a far better option than the lift, though far more upheaval in the short term.

It still baffles me that you can get financial aid to do this, but cant use the same funds to move to a suitable home that wouldn't require the stress of such large scale construction. But then I had similar thoughts while on JSA about what training they would and wouldnt fund and how the inability to fund training in the short term cost them more in the long term.

[Philip Ayres]

Mad isn't it? We could go on the housing list for needing a suitable property but there's all sorts of issues involved with doing that.

[Andy Turnbull]

An extension - so The Death Fortress becomes a sprawling Death Fortress!

Andy

[Fortmax2020]

I hope the new extension connects via micromaster ramps!

[The Doctor]

Phil: does this mean that you would have to move the Doctor Who DVD's so they are in the correct order?

-Ralph

[Philip Ayres]

The DVDs are in the correct order with the Classic all along the bottom where they are easiest to reach.

Some re-arrangement may be necessary in the new layout.

[browny87]

that's an insane plan mate but also sounds quite cool and interesting,

I see you also got the rabbits in a cheeky corner pic! maybe you could build them a room during the extensions?

[Philip Ayres]

Got some visitors coming in this morning to talk extension & downstairs alterations with us. Eeek!

[chrisl]

Hope it goes well Phil.

[Andy Turnbull]

Hope it went well.

[Philip Ayres]

Think so, yeah. What we're planning isn't impossible to do and we can go back further than we thought without planning permission (up to 8m, or half the length of the garden, whichever is less). No reason the hall wall shouldn't come out - giving a wider turning circle for a potential chair as I come in the door - and if it's load bearing something could be done to support it, possibly involving the new bedroom wall.

Still concerned about a confined downstairs bathroom but I'm told that'll be possible to sort, and sort in a way that won't involve a fan running while I'm in the bath - extractor fans irritate me.

[The Doctor]

Will the library survive?

-Ralph

[Philip Ayres]

It'll be moved into my bedroom. Some pruning may have to occur. I'll have two and a bit units to move down from upstairs.

Thinking PC desk in corner by window, under where DVD shelves are now. Bed next to in lengthways along the wall where Sofa & chimney breast are now.

4 shelving units worth on corridor wall, 2 backing onto bathroom/kitchen, one at end of bed.

Will need a wardrobe and radiator in there somewhere.

DVDs into new lounge at back of house.

[Fortmax2020]

Sounds like a plan is building nicely.

I will help your pruning by providing a new home for TR Grand Max.

[Philip Ayres]

Are there any others you would care to rehome.

[Fortmax2020]

Grand Galvatron. If only to hold Power over Burns.