Lining alone#2

[Deb]

Hello Panniertank,

So sorry you've got to make such difficult decisions on your own. It's not surprising you feel anxious , especially as you dont feel safe to go out with your Walker.

As Lynne suggests the ramp is possibly more important than parking although obviously this is your choice. I use a power wheelchair and our car is a WAV , which I use my mobility allowance for. I resisted this until I couldn't go out safely or get out of a normal car and then it all became a mad hurry ! I have much more freedom and I feel safer in a wheelchair so I would gently suggest looking ahead ( which I didn't do ) to make life easier and safer for you. You don't have to use a wheelchair but it's there if you're tired or are having a wobbly day.

Good luck with everything Panniertank, I do think this stage of MND is especially hard and scary because you haven't quite got the things in place to make your life easier and there are lots of tricky decisions. I really hope the health care professionals are supporting you.

Love Debbie x

[panniertank]

Thank you Lynne and Debbie.

[panniertank]

Hello like I have said many times I struggle to contend with my diagnosis of MND and I am often in denial. It has ruined my life and it is difficult living alone with it. I hate being housebound so I started going to a palliative care day unit. And I used a special company to take me out in a wheelchair car to visit my mother in her care home. I was going to use them to take me to favourite towns or countryside in the spring. But now I can't believe there is coronavirus to contend with as well. It is going to ruin my attempts to make the most of my life with MND. I can't visit my mother because that care home like all others is stopping visitors. Because of my underlying health conditions ( MND and AS) I am going to have to self isolate and be housebound, probably for several months. So this week I felt I had to stop going to the hospital day unit. I am sorry that coronavirus has killed so many people. And I am sorry that that the youngest uk person died due to coronavirus this week and he had MND. Very concerning. Like I said before, horrible and so cruel that there is coronavirus to contend with on top of MND.

[nunhead_man]

Good afternoon

Tell me about it!

We are having to move because the place we live in is not suitable for me eventually being in a wheelchair and of course we are now in Covid 19 hell with regard to the various pieces of the puzzle that need to be put together to allow us to complete on our sale and purchase on the same day.

[panniertank]

Sorry Andy that you are going through all that and you are now in covid19 hell. Tell me about it?? If you mean about houses etc in the past 5 weeks there have been builders converting my garage to a downstairs wetroom and converting my patio door to be wheelchair accessible and building a ramp outside the door. Hopefully they will finish the work this week and it is going to cost me about £20k. Hopefully it will allow me to stay in my home for as long as possible as I become more disabled. But the doors are wide but not as wide as my OT suggested etc.

[nunhead_man]

Hi Panniertank

Thank you for your thoughts.

What happened with us was that our occupational therapist suggested this time last year that we need to get moving because our existing house was not sensible to be converted so we are moving towards buying one that will be that sensible. But of course if Covid 19 hits one of the stages - either us needing to self isolate or our buyers similarly or even our removal firm doesn't have enough staff.....

Glad to hear your building works are going well and as you say it will allow you to stay in your house for as long as possible.

But how wide are your doors? My OT said ideally 800mm wide if not 900mm

[panniertank]

On the drawing my doors are 925mm wide. But my OT wanted them wider than that ideally , based on the turning circle of the wheelchair ( I can't remember if that turning circle was 1200mm or 1500mm. Maybe because my hallway isn't very wide. The kitchen door has been widened as well and it is immediately opposite the new doorway in the hallway to access the wetroom. So, if the doors aren't wide enough to facilitate the turning circle then hopefully everything will be accessible but maybe with three point turns rather than one turn.

[Hayls]

Hello Panniertank and Andy
My OT seems very good but I’m often wondering if she’s going OTT with her specifications 3 properties have fallen though for me and hubby because the properties can’t be altered to her specifications, it’s almost like she’s given an impossible list, very frustrating, wish you both lots of luck that everything will soon fall into place, stay safe

[nunhead_man]

Good morning Hayls

If it's any consolation we had endless trouble finding somewhere that we thought we could convert sensibly.

We have had to move quite a long way away from home to generate enough spare cash to do the work we want to on the place we hope we are about to buy.

Concerning specifications it depends a little bit on how big is the person that is going to be disabled because if you have somebody who is 6 foot six and well built who is reclining in a wheelchair then you need the full 900 door width with the appropriate turning circles et cetera et cetera.

However if you are slighter than that you might get away with narrower door widths et cetera.

One of our tips is to look at the floor plan of the houses that you are looking at and see how much spare wall there is adjacent to each of the doors that you think you might have to go through. If the door is the end of some sort of corridor with only the door width to play with and that door is too narrow, then it probably won't work for you. But if conversely the door is in a wall that is perhaps 2 m or more long then widening a door from the usual standard 750 to 900 is a doable building job.

The other issue is wet room versus bedroom. Either both of these need to be on the same floor or there needs to be a way in which you can see (and afford) to drop a lift down from the first floor bedroom to give access to a ground floor wet room - you are unlikely to want a wet room on the first floor because of the wetness issues.

In our case we have given up being able to find house with a garage on the right side of a house to fit in with spare reception room has a room of a sufficient size to make a bedroom and have gone for a place where we can drop a lift down from a first-floor bedroom to a ground floor wet room

[panniertank]

Uggh. My building company have finished their work today. But the plumbing company they use didn't come today to connect the new radiators in the wetroom and the radiator that had to be moved in my hallway to allow the access doorway to the wetroom to be built. The plumbers had lots of emergency call outs but they can't say when they will be coming to connect my radiators because they think they may be quarantined due to coronavirus.
Hayls and Andy, I am sorry you have got so much to do concerning your housing. Moving house or buying a house is one of the most stressful things to do for healthy people. But having MND to contend with is horribly life changing and having to move house etc on top of it must be incredibly difficult.
My brother in law was totally paralysed when he broke his neck several years ago. My sister had to arrange modifications to their house and she struggled as well with what OT's and building companies proposed. Often what they proposed was totally different and some of the builders proposed massive changes to the living room. In the end she took a risk and made her own decisions about what had to be done,and those decisions were somewhat contrary to what the building companies and OT's proposed. But she was right and like I said he has lived there for several years. But he has 24 hour care and it is all payed for by chc.
My family seem to be cursed. My poor dad had Parkinson's disease on top of krohn's disease. He died of pneumonia. My brother in law was totally paralysed after a cycling accident. And now I have MND on top of AS. Looking back on my life I am glad it has been mostly good. I worked hard and played hard. But I am gutted now if have got MND, live alone with it and can't do all the things I loved doing.

[Hayls]

Andy, thank you so much for your hints and tips, I think I might have to move away from my support network of Family and Friends and incredible hospice, my hubby has a property that is very rural but it already adapted partly but I’m holding out for something closer to home because of my support needs I feel will be too much for hubby 24/7 and being so rural will make help and support very restrictive and minimal, I’m keep everything crossed something turns up, thank you

Panniertank, Yikes, your family have certainly been through it, as for your plumbers, blinkin workmen, hope they aren’t affected by the lockdown so they can get the job done sooner rather than later, fingers crossed

Hope you both stay safe xx

[nunhead_man]

Good morning Hales

Thank you for this........................

Andy, thank you so much for your hints and tips, I think I might have to move away from my support network of Family and Friends and incredible hospice, my hubby has a property that is very rural but it already adapted partly but I’m holding out for something closer to home because of my support needs I feel will be too much for hubby 24/7 and being so rural will make help and support very restrictive and minimal, I’m keep everything crossed something turns up, thank you

We had moved five years ago to somewhere fairly urban in central south London with everything five minutes away - library, dentist, railway station, vet, two good small branches of supermarkets, pubs with own theatre.

When we learnt from our OT that the house we bought wasn't suitable for my development we were gutted so we have tried to replicate the situation we created five years ago in where we move to and we think we might have done it if we manage to exchange.

We depend on somebody buying our house to buy the other one and the people that are buying from us seem to be in a total twitch about coronavirus so our solicitor is trying to calm them down - I think if we all calm down and wait a couple of weeks it will all go through but they are saying they want to wait until early May and exchange and complete on the same day which is completely stupid, not the least as we need to give 14 days notice and pay upfront for our removers and my wife needs to give four weeks notice at work plus there are a number of other things that will take a few weeks to change - Internet, burglar alarm, utilities, postal redirection.

So wish us luck!