Good Ways to Vary Posture

It is a good idea to change an immobile person's posture at least once every hour, day and night, not just to ease monotony, but to keep the body supple. Some different suggestions as to fun ways to position them are listed below:

Tilt in space dining chair: If you can get funding a tilt in space dining chair such as Lekkey Advance, will be useful for mealtimes, and a nice change from the wheelchair.
http://www.leckey.com/template.asp?parent=48&pid=218&webArea=1

Feeder seat and positioning wedge: particularly for children, the feeder seat allows the person to play with friends and siblngs at floor level.
http://www.sammonspreston.com/content/PDF/spr/Pediatrics/PediatricForms/FeederSeat_09.pdf

Hammock: Use only with supervision - a lying down alternative to the swing, relaxing and giving a sense of motion. They can be bought with stands as well, which allows them to be used indoors too.
http://www.hammocks.co.uk/hammock-stands.htm


Swing: Also provides a sense of motion. For the UK:
http://uk.specialneedstoys.com/swings/1201-full-support-swing-seats.html
For the US:
http://www.backyardcity.com/swingsets/accessories/JennSwing.htm

Wagon: If a car seat is used, this can be an alternative to a wheelchair. Or the person can lie supine like a mobile bed. It allows comfortable reclining position whilst someone uses the handle to pull the wagon, meaning the person gets an easy change of scene.
http://www.wagonworld.com

In the US:
www.westcoastwagons.com

Fold-out Chair-bed: This can be used in the living room, and folded away to make extra room. Provides comfortable, floor-level positioning for the person.
http://www.nextag.co.uk/fold-out-chair-bed/zzukzB1z38--products-html

Other Useful equipment includes:
-A neck pillow
-A draught excluder, which can be used to prop a person up on their side
-A small cushion for the person's feet
- A V-shaped pillow for propping a person up in bed
- A wedge-shaped pillow for keeping a person's head propped up when lying flat

- A bath/shower seat
http://www.smirthwaite.co.uk/bathing/index.html

- A Car seat
http://www.adaptivemall.com/colorseat.html

Rice Cushions - Great for Aromatherapy and Fluctuating Temperatures

Many people in the late stages of leukodystrophy experience repeated infections that cause fever, but also temperature fluctuations due to damaged myelin in areas of the brain that regulate temperature. This is a little trick that may help.

1. Find four cotton cushion covers that are tightly woven, and fill two of them with dry, uncooked rice, corn or buckweat. Don't stuff them full, let there be some room for the filling to flow and the cushions to mould to desired shapes.

2. If you want, add some scent such as dried lavender, cammomile and lemon peel, and put these in the filled cushion covers too.

3. Sew the filled cushion covers firmly shut, place each in an empty cushion cover and sew these shut too. Now you have what look like two cushions.

4. If you want to use them you can either microwave them for a couple of minutes, or put them in the freezer for 45 minutes, depending on whether the person's temperature is too high or low. If the person's temperature is swinging between extremes, one can be microwaved and one can be put in the freezer, and as the temperature fluctuates, you can switch between the two.

WARNING: Make sure the rice does not overheat by heating it for a maximum of 20 seconds at a time in the microwave, then testing the temperature. Place a non-metal glass of water in with the sock to prevent a fire starting. Always test the temperature of the heated/chilled rice cushion on your own cheek or arm first, to make sure it is not uncomfortably hot or cold.