May 24, 2013 at 8:27 pm #74872Adaptions
I am in the process of reading all the MDC literature on adaptions. Up until now I have avoided any changes to my home as I seen it as the condition winning and me losing but lately I have been forced to accept that maybe these changes could make my life better. I am considering asking for Neuro for a referral to the OT service.
I think I dread them taking over and suggesting a lot more things than I am ready for at present.
What was others experience of OT involvement, how long does it all take and who pays for the alterations etc.
Gillmiracle77ParticipantPosts: 267Joined: 17/08/2011May 25, 2013 at 8:56 am #89050Re: Adaptions
Excellent points here on the massive subject of adaptations to the the homes of people with progressive neuromuscular disease. It is a very worrying time to go through and the decisions so very important but I would say coming out the other end it has been a wonderful experience.
The O.T. people are experts at the problems that face us and do a magnificent job. The are the people to go to and do
a difficult job with incredible understanding. Three years ago I just could not see how I could remain in my home but now
all is on an even keel thanks to an amazing range of well thought out adaptations.
The O.T.’s were not upset when I refused to go to the warden control flat as they wanted. They were quite happy to come
up with a plan B. They were quite happy to come up with a plan C when I got really upset after they had done paperwork for stairlifts and stuff. They came up with an integrated plan so that I now live all on one level with my toilet three steps from bed and four steps from sofa. Toilet frame, bed leaver, 18 safety grab rails, bathlift, seated shower, chairs raised on blocks, seats in front of kitchen and bathroom sinks, wheeled food / laundry trolley, new safe cooking methods, loudspeaker phones. A voice door entry system, buying a second freezer and getting Tesco to deliver means I do not have to go out for three weeks at a time when cold or poorly. The O.T.’s and the Regional Advisors did all this for me and I cannot thank them enough. At the time it never entered my head and was convinced that I had a massive problem that was unsolvable. I was made a case study of how a person with neuromuscular disease could be helped to remain in their own home http://www.muscular-dystrophy.org/how_we_help_you/care_and_support/care_advisors.
They even have plans for the future about which walls are non permanent and can be used to open up
my living space even more as mobility decreases.
"Even if you are not paranoid, it does not mean they are not out to get you!".May 25, 2013 at 9:04 am #89051Re: Adaptions
Major adaptations can be funded by a D.F.G – disabled facilities grant. The Regional Advisors are experts on
this and at conferences and meetings often have workshops to help people on this.
There are more O.T.’s than people think. I have had help from O.T. people at the Bristol Hospital that deals with
me, from the local DART (disabled adult resource team) and the O.T.’s from the local Social Services who dealt
with the stairlift and items like that.
The last regional conference had all sorts of advice on adaptations with templates and gadgets to work out turning circles
door swings and things that I never even dreamed were factors. All good stuff !
Yes the O.T.’s are the people to go to (maybe in conjunction with the Regional Advisors)
"Even if you are not paranoid, it does not mean they are not out to get you!".May 26, 2013 at 8:09 pm #89052Re: Adaptions
There is a very good adaptions manual on CD
Order here :-
and the Self management pack is written by the ladies who often do the D.F.G. workshops.
has lots of other vital stuff too. Order here :-
"Even if you are not paranoid, it does not mean they are not out to get you!".
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