Beds and Alternatives

Contributed by Carol Moskowitz, RN

Many alternatives are available for bedding for people with Huntington's disease. When the current bed becomes unsuitable, look to see what is wrong from the patient's perspective. If they are falling out of bed because of their chorea, look at hammocks or a floor bed. If clumsiness and trouble with balance is a problem, then a trapeze bar added to the bed frame, or a bed at the same height as a chair can be used to ease transfers. Remember to look for safe alternatives that can preserve the persons ability to move and that does not isolate them from their environment.

Hammocks

In Venezuela most everybody sleeps in a hammock, including those in the large Huntington's disease kindred's in the highlands. These are not the North American back yard hammocks that are so hard to sit in, but hammocks that completely enclose the person. Two, seven foot long by seven foot wide 100% cotton flat weave hammocks are what you should try to get. They will need to be secured to support beams by boat hooks. You will need a structural engineer or builder to help find the posts to secure the hooks to. Most nursing homes of Veteran's Administration hospitals (VA) will give you one chance to get it right.

You need two because one is always in the laundry to remove pee, poop and food. Your best bet is to hang the hammock out to dry; in fact they do not fit or last long in home dryers.

Hammocks are available through non-profit cottage industry catalogs that sell products from cooperatives in Central and South America. One excellent source, used by many in the Huntington's disease community is: Pueblo-to-People, ask for a buyer to special order these hammocks, because the buyers know which ladies at which cooperatives are still working, as the hammocks are no longer a regular item. Their telephone number is 800-842-5220.

One place to try on the web is Hammocks by RADA which has hammocks from Central America and Mexico. Try the double or the matrimonial size.

 If you know of any other sources, especially for Europe, please : Email me and let me know so that I can update this page.

A bed can be placed on the floor if the concern is that the person is continually falling out of bed. This can only work if the patient is able to get up safely from this low level. Two or mare twin or standard mattresses can be placed next to each other. A standard king size fitted sheet will help hold two twin mattresses together.

A low platform bed, as used in Scandinavian countries is easier to get into and out of and is generally firmer than the usual mattresses in North American. The lower height makes it less likely that a person could hurt themselves if they would fall out of bed.

Try to remove loose throw rugs that are easily tripped over around the bed. If you have smooth floor surfaces around the bed, wood, tile, etc., a throw rug with a rubber backing can help to prevent slipping as can slipper socks with rubber dots on the sole.

There are additional items that can be used to modify existing regular and hospital beds. With the help of an upholsterer, firm foam padding can be fastened to plywood battens, covered with vinyl and fastened to the inside of the bed rails on a hospital bed. This can help keep a patient from injuring themselves from striking the bed rails. However, the result is also a bed that is 4-6" narrower.


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KUMC Pulse This home page is supported by the Department of Neurology at the Kansas University Medical Center and by the Huntington's disease support groups
Suggestions and comments are welcome. Please mail them to me at: Dubinsky@kuhub.cc.ukans.edu