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If a residence for individuals with ALS were to be built what do you think it would have to look and feel like to make it appealing to an ALS resident. Let's assume it would be a 10 private bed room house all with private shower and bath. There woul be a beautiful kitchen for the residents and their families. What else would it have to have in order to make it an alternative to living at home.
Hi I am Cyndi, April 16 2005 I got the news after a year of wondering what this was.
We are slowly talking about making some changes to our beautiful contemporary custom built home that we designed and built ourselves. I am having trouble with the small things right now like my clothing stye which I am being forced into that is Totally NOT cool! : )
But as to your question. I think that would be an awesome house! Room for patients and care givers. Ramps everywhere. Big door openings. Walk in bath tubs that have a door that opens and closes. Internet ready for computers. Lots of TV's with players for movies and instructional dvds. I myself Love big new Kitchens and that is where everyone congrigates so an open area off the kitchen that ties in with it is very popular and a good idea I think.
Something beautiful outside the windows.
This is my first blog so please forgive me if I poked anything wrong .
How about ceiling tracks to move PALS from power cair to bed, bathroom, and a sling to let them get in tub or whirlpoool? Also sliding doors save so much space. Showers big enough for 2 are nice too--I found it easier to get in the shower with Cale--told him if he didnt laugh at me I wouldnt laugh at him. Rooms for family would be great too--there aew times when CALS must be near 24 hrs a day.
Barry your idea sounds great. Bright cheerful colors would be nice. Tilt type beds or hospital type beds for those that need it. The walk in tubs sounds great, I would kill to be able to soak my tired bones in a tub and be able to get up. I have a roll in shower that will take me and an aide with a shower wheel chair. I would think that a lot of arm bars to pull ones self up would be nice also. I have a friend with ALS and he disigned his own house with an elivator to get from the second floor to the basement game room, and all points in between.
Great idea. iceberg
I'd say the pals rooms should have large open windows with a beautiful view, like to a garden or small courtyard that they could also visit.
Also a physical therapy/massage room with one or two therapists staffed to make sure each pals gets the proper amounts of stretching and exercise...
Maybe a great room where people could gather together, have group counseling, meetings, play games, watch movies, etc.
Also, one thing i really wish i could have is total control over everything in my room FROM MY COMPUTER! Oh yah!. that would make life SO MUCH easier for me and my caregiver. It would be AWESOME to control the TV, curtains/blinds, radio, recliner chair, room temperature, lighting, bed position, etc, all through the computer! THAT WOULD ROCK! That would give so much independence back to those living with ALS.
Hi,
Does the technology exist that you spoke of. Can a computer control the enviornment in a room.
Thanks
Barry
Oh yah! :) The technology definitely exists. You can control just about anything remotely and through a computer, but I'm sure it costs a pretty penny.
It would have to be eye controlled from the computer to adjust the tv, lights..etc... ;)
Sounds like a nice/dream place to PALS. I smile when I read these especially Kimnbomcs. She sounds so high and well spirited.! Such a sweet little baby girl....
Dear Barry,
The suggestion for environmental controls in an ALS residence is a good one and worth considering, Environmental controls are worth considering for pALS living in their own homes too.
The federal Assistive Technology Act of 2004 funded assistive tech centers throughout the USA. There is a link to a list of these centers by state at http://www.assistivetech.net/webresources/sourcesLev2.php?category=21.
Any group working to open a residence or any person with ALS who is looking for information and guidance about environmental controls may find assistance through the AT organization in their state. ALS Association Chapters may be able to connect groups and individuals to local AT centers.
Some environmental systems are less coslty than others. A system recommended by some Florida families is the X10.
Also, I have known veterans with ALS who are retired from military service who have obtained environmental control systems through the Veretans Administration. If the ALS residence is the home of a pALS who is an eligible veteran, the VA may be a resource for environmental controls.
The federally funded AT organization in Florida is FAAST, Inc. The Florida Chaper of The ALS Association has an agreement with FAAST to run a collaborative AT loaner closet for Florida pALS. FAAST, Inc. is an organization I call with many AT questions from Florida families.
Christine Bright, MSW
C.A.R.E.S. Coordinator, The ALS Assocation, Florida Chapter
Barry,
One more note...
The longest existing ALS residence operating in the US, that I am aware of, is the The C. John & Josephine Muller Residence for ALS Care at Chandler Hall, a Quaker administered life care facility, in Pennsylvania. I believe this residence has been funded by an endowment through the Philly ALS Association chapter, through Medicaid, through private funds and fundraising events
The administrators and staff at the Muller Residence may be good sources of information for anyone working to open an ALS residence.
Christine Bright, MSW
C.A.R.E.S. Coordinator, The ALS Association, Florida Chapter
I am wondering where there are now ALS residences in the USA and where ALS residences are being planned. I know of the residence in Chandler House in Pennsylvania, of a residence being planned in Massachusetts funded by the Greenhouse project, and of a foundation raising funds for an ALS residence in Florida.
Are there any other ALS residences or projects in the USA? Very few existing nursing homes or assisted living facilities are set up to care for persons with ALS. I think there may be a need for ALS residences around the country.
Amen! I am so happy to see that the idea I had 10 years ago is coming to fruition. I am going back to school for an RN degree with the goal to open up such a home here in Upstate Central NY. A friend who is an OT asked me several years ago if I would go back to school for a nursing degree so that we could open a home for PALS which nursing homes or remaining at home is not an option. Such a place for peace, the best of care and to "live it up" while living with this horrible disease. All the best equipment, sights, sounds,and caregiving surrounded by love is the least we can do for our PALS. Top notch care...... with no discrimination. I am so motivated, and after seeing this discussion it pushes me full steam ahead.
We are currently adding an addition for my son who has had ALS for a year. We are adding a first floor master suite for him with a handicap assesable shower. We are having problems finding a base for the shower. Any suggestions?
wow,that sounds like an incredible idea.i agree with all the bove suggestions,ad a few that i would add are:a hydrotherapy area,that would be suitable for trached and non-trached residents;t.v. hook-ups to a local university to participate in lectures or just to study,a music room for chamber music performances for guest musicians to perform for the residents;adapted arts for the artists that may reside their.this would be wonderful.
hugs to all,never ever give up hope,keep the faith,and keep smiling :) :) :)
Oh My god what an awesome idea! My brother of 12 years with this terrible disease had talked about this idea. He lived at home and had alot of family around him. I miss him so much. What an amazing man. I have meet so many wonderful ALS Patients and their families and I owe that to my brother.
My brother did have an eye glaze computer that controlled everything in his room even the air conditioner.
Any information on that type of information let me know.
Marcy
We added a bathroom a few years ago when my husband was first diagnosed with ALS. The contractors built a 4' X 4' shower area in the corner and we installed hospital type shower curtain that is attached to a track on the ceiling around the area. The drain is in the center with slight slope to allow the water to be contained (mostly) in the shower area. The floor and walls are tile, plus they put a waterproof rubber liner under the shower area before the tile was installed. We use a shower chair/commode for his showers and the lift can roll right into the shower so we can set him down on the shower chair. It works well!!
Barry,
If money is no object, Barry, then the home should be a magnificent respite from the limitations of the disease. First, all bedrooms should be part of a single level facility. With a ranch-style you could purchase property that is natural but designed to be accessible by power wheelchair. Low pile carpets, wood, tile, cement, lano should be the flooring. Nothing with steps, or difficult transitions. Have large open doorways with wide, navagable hallways. Bathrooms should be bright, spacious and equipped with a ceiling track lift, roll-in shower room, pedestal-type sinks, retractable mirrors etc. Lastly, incorporate a room that is a first-class spa, where treatments can be conducted with piped-in music, aroma therapy, facials...the works. Good luck!
One thing I didn't see already covered would be a nice, partially covered outside "vitamin d garden", where pals and cals could go to soak-up some rays, get out almong some wildlife, even if it's only some roses and a hummingbird feeder. While we're outside, why not throw in a vegetable garden for some fresh produce for the residents? I was at Sam's Club last night and they had a type of self-contained garden kit set-up that would be ideal. I'm trying to find a picture.
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