Adaptations

[elliecrawshaw]

Hi everyone,

 

My name is Ellie Crawshaw and I am researching adaptations to the homes of disabled people, in the UK for my third year dissertation at the University of Leeds. In particular, I am researching disabled people

[Marina]

Hi Ellie and welcome to our forum I hope some of the members here might be able to help you with any queries about adaptations. I expect some of us will be interested to know how your aunt and uncle manage, especially as they both have MS. Would you be able to tell us a bit more about them and how they cope, perhaps in another topic in the MS Discussion area? You may find this will open a discussion with our members here on how they cope too although I can't remember if we have any couples who both have MS.

 

One little comment about your survey, if I may? It's rather long for some people with MS to fill in... also the font size for the multiple choice questions is a bit small for those who have vision problems. We've had this question of length of online surveys come up before, it might actually have been the MS Trust itself who queried it and found that MSers are less likely to feel able to fill in long surveys or ones that take more than 10 minutes to fill in due to concentration levels etc. You may therefore find that fewer people might fill it in than you might hope for.

[elliecrawshaw]

Hi Marina, thanks for the welcome!

 

I'd be happy to tell you a little about my family. My Aunt and Uncle both have MS, my Uncle is in the later stages and is generally reliant on others for his personal care now, and may infact be moving into residential care, while my Aunt uses a crutch to get around, and works part time. They actually met through an MS magazine, both having been married once before.

With regards to their home, they actually had to fund much of the adaptions themselves which was costly, and had work done a few years ago (my Uncle used a wheelchair at this point) to enable my Uncle to have better access around the house. Many of the facilities they had fitted my Aunt will then use as her MS progresses. They have had the sinks and breakfast bar lowered to allow wheelchair access, a wet room with shower put in, and another small wc installed, so that my Aunt can use these facilities when my Uncle uses the wet room (as you can appreciate, it can take time.) They also have a ramp at the front and back of the house, and a graduated driveway. This was actually fitted by the probation service as part of community work, and they were very happy with the results. They paid for the raw materials whilst the labour was free.

My family have been involved with some of my Uncles care, but my Aunt and employed home help assist my Uncle with many daily tasks. However, as I have stated, he may be moving into residential care, although I haven't really been informed much about this, while my Aunt will still live in their existing home. As I understand the situation, my Uncle's MS has progressed quite quickly in the last two years, and as a result no longer works or can use his car, which has obviously affected them financially, whilst also estranging him from his two sons in Kent.

With regards to how they both manage, the adaptations they have had put in place are currently used by my Uncle, and are likely to be eventually used by my Aunt. While my Aunt's condition is not progressing as fast as my Uncle's she is mainly caring for him, but as time goes by this is becoming increasingly difficult for both of them, hence the introduction of home help and the possibility of my Uncle going into residential care.

Any other questions anyone has I would be most happy to answer!

 

Thanks for raising those concerns about my survey. Unfortunately the survey doesn't have a "save and continue later" button (due to the website stating I have to upgrade to access that facility!) However to overcome this I have tried to make more multiple choice questions. I have said to set aside 25 minutes for the questionnaire, but so far my respondents are answering it in about 15, but thank you for raising this issue with me and I will try to rectify it by upgrading my survey! I shall also try and change the font and make it larger, thank you for raising such an important point!

 

Ellie x

 

Hi Ellie and welcome to our forum I hope some of the members here might be able to help you with any queries about adaptations. I expect some of us will be interested to know how your aunt and uncle manage, especially as they both have MS. Would you be able to tell us a bit more about them and how they cope, perhaps in another topic in the MS Discussion area? You may find this will open a discussion with our members here on how they cope too although I can't remember if we have any couples who both have MS.

 

One little comment about your survey, if I may? It's rather long for some people with MS to fill in... also the font size for the multiple choice questions is a bit small for those who have vision problems. We've had this question of length of online surveys come up before, it might actually have been the MS Trust itself who queried it and found that MSers are less likely to feel able to fill in long surveys or ones that take more than 10 minutes to fill in due to concentration levels etc. You may therefore find that fewer people might fill it in than you might hope for.

[Michelle]

I can only speak about council adaptations. One thing that bugs me about my adapted bungalow, is the lack of space. I'm sure the council think that as long as you can move around in a wheelchair, then they have met your requirements. I'm a fairly young 40 something, and have a certain amount of style - in that I have a nice brown leather sofa etc. I feel the council give little regard to the fact that I might like to have enough room to entertain, and have a life outside of my wheelchair.

I wouldn't have a hope in hell if I had a major relapse. I think I would be stuck in bed for most of my life. Maybe I have too much furniture :wink:

 

Michelle

[rachy]

My problem is that i live in private rental and they want a 5 yer tenancy agreement to carry out any work even tho my landlord gave them the go ahead 5 yrs is allot to expect myself and landlord to comit to due to we might have change in circumstances due tomy ilness .. I already lost my job so only got 1 income

[madhouse]

We have been allocated a disabled bungalow by a local housing association which is still in the process of being built at the momment , it is due to be finished in the next couple of months this will be a god send for Jen as she needs to be in a electric wheelchair , something they are not willing to allocate to her(even though they told her she needed it and allocated her one 2 years ago) as our current address doesn't have wide enough doorways/hallways we do have a normal w/chair for going out .The bungalow will have two bathrooms, a wet room which is attached to our bedroom and a normal bathroom with a slightly sunken bath in it(I pressume this is so that Jen can reach over and bath the little one from her wheelchair) , it will also have a floating kitchen in it which is as far as I can work out lowered units and worktops , which to be honest is a bit of a waste of time for us as I do all the cooking anyway because apart from anything else Jen doesn't have the strength to hold a pan full of stuff.Our current address does have a stairlift in it which was here before we moved in and it does have a ramp to the front door , Jen also has a battery operated chair for lowering her into the bath, but she doesn't like it much as she doesn't feel it goes low enough into the water.

Edited 11 Apr 2010, 12:28 pm by madhouse

[Dianni]

I have one of those bath chairs and although it's not ideal, it does at least mean I can have a bath. We're having loads of work done over the next few weeks. Doors widened, ramp built, wet room installed, through floor lift! It will be chaos but worth it. Good luck with the move!

 

Hugs

Di

xxx

[madhouse]

Thanks Dianni good luck with your alterations it definatly will be worth it in the end ,because the house we are in is a temporary property, we haven't been able or not wanted to do it up as its just a waste of money so the place is a bit of a mess to be honest , thats why the move to the bungalow will be great as that will then be our home and can spend some money on it to make it look good.