I just received an email from MDA that they'll be launching a "Accessible Spaces Gallery" in their online transitions resource center next month. Here's the info from the email. This might be helpful (if you can wait until next month):
Have you recently made any home modifications? Have you come up with creative solutions to accessibility issues for your work space, living space, or even dorm room? We’d love to hear from you!
We will soon be launching a new feature on MDA's online Transitions Resource Center (MDA TRC) called The Accessible Spaces Gallery, which will include images and details of modified/ accessible spaces submitted by members of our neuromuscular disease community.
Please send digital photos of your renovated work spaces, living spaces, dorm rooms, etc. — along with any details about the project — to firstname.lastname@example.org. We will show off your design skills and innovative ideas by including your submissions when we launch the new photo gallery next month. So grab those cameras and help the world become a more accessible place!
We built an accessable house about 5 years ago. So far, so good. The things I like a lot about our house are: 1) Equipment room in Erik's bedroom where we store the lift and shower chair and charge his wheelchair etc. That way we can close the sliding doors and have a place for it all. 2) We have natural gas in our house but have a dedicated electric wall heater in the bath so it can get toasty fast. 3) We put an "emergency" door in Erik's room with a ramp. This way we can push him in his bed outside in case of an emergency. 4) Generator back up on Erik's room and parts of the house. It just take 2 levers to push and we have power. 5) Few areas with rugs. 6) Against my initial veto, we wired Erik room for internet, satelite etc. 7) We used boxstore laminate counters to run long "desks" along 2 walls in Erik's room. This gives us the option to lower/raise the counters as his chair changes and gives him a lot of space to put things where he can get at them. 8) We are lucky to have a lot of land, so we made our attached garages very wide. Best wishes.
Hi everyone. I need some help. We were in the process of purchasing a house in Clark NJ. We have to extend the house out the back about 15'-20' for accessibility for the boys bedroom and bathroom We came across a problem with the State. Behind the house is a body of water that is owned by the state and has some wetlands behind that. They said in order for us to build on the house we would need to put out the money for surveys, plans, variances, etc which would be about 8-10k dollars. That in no way would guarantee us the ability to make the renovations on the house, they could turn us down, We do not have that kind of money to throw away. The town does not have any problems with us making any renovations for the accessibility for our 2 boys. Does anyone know how to help? What is our next move? Do you know anyone we can talk to? Please let us know.
At this time I am serving as in-home caregiver to two young men who are on full
life-support, they suffer from Duchenne muscular dystrophy. They are in their 20's now.
Both guys are so positive in their attitudes and love life so much that I am compelled to
try to support them by helping supply their needs.
This family had four sons, all four inflicted with Duchenne muscular dystrophy. Two of the
sons have passed away. The two that remain are doing very well in spirit and determination
to stay alive. They are funny, personable, smart and caring. I have to wear a back support
belt when moving them. One night I forgot to put on my belt prior to the moving activity and
was instantly reminded to put my belt on by these caring guys! They watch out for me too.
The room they live in has no cooling. It gets tremendously hot in the summer in this room.
These boys need protection from the heat. Is there anything help out there for a situation
like this in order to fix this problem? Believe me, if I had the money, I would take care of
this problem myself, but alas, I am not in a position at this time take on this expense. I
believe there are portable air conditioners that could be used, I believe they run between
600.00 and 800.00 dollars. However, I am opened to any suggestions! :)
Also, the boys would love to go outside and hear the birds, see the sky and feel the fresh
air on their faces again. They haven't been able to do this in years. They are on full bed
rest with limited mobility. Although the men can move their fingers and toes and face, but
little else as all other movement has to be done for them, they would love to be outside
once more to feel nature on their skin. They have been inprisoned in their room for so many
years now. I don't know about any special beds that would accommodate their needs, hold
them,their oxygen and I.V. equipment. The parents have built a deck, with a roof, and is
attached to their room. It has double wide doors that open to the deck from their porch. The
parents have spent so much over the years to provide as good of life style as they could for
the boys. They do not have any reserves for a bed like I am dreaming about. I don't know if
such a bed exists. It would be great to show them people care and to provide a little help
for them now.
Please reply to me if there is any advice or direction that you think would help with my
quest to make these two men's life a little more enjoyable. I don't know how to tap into
support organizations who may be willing to look at this situtation and provide relief for
Loretta Memmay from Idaho