Practical Tips for Living with Scleroderma
By Claude Springer, D.D.S. (originally published in "Scleroderma
Voice," Winter 2000–2001)
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My wife Marcia has had scleroderma for over 20 years. When
she was first diagnosed, I ran to my pathology textbook (I
am a dentist) and got scared out of my wits.
After further investigation we realized she had the CREST
syndrome, and I was able to calm down. From that point on
I was able to concentrate on devising ways to help her with
the everyday tasks of living. Some of these strategies may
be helpful to others.
Problems gripping with fingers
Marcia has trouble grasping items with her fingers. The following
are some practical aids we use to make daily life easier:
- We removed many of the round doorknobs in our house and
replaced them with lever handles.
- We took all her pants to the tailor and had Velcro®
fasteners sewn on for easier opening and closing.
- We replaced many light switches with rocker-arm types,
which need less of a push than conventional switches.
- We tried out various types of cups and mugs until we found
the size and handle configuration for easiest cup pick-up.
- We found that eliminating saucers under cups made pick-up
easier.
- Both at home and in restaurants, I cut up some of the
meats and vegetables that are hard for her to manage.
- She has a buttoner for buttoning and unbuttoning clothing,
but since that is very time-consuming, I help her dress
and undress whenever I can.
- We have placed tong-like tools around the house to help
her pick up small objects.
- Items in drawers and in the refrigerator are placed near
the front for easier access.
For problems associated with eating
and drinking
- In restaurants, we request not only water without ice,
but room-temperature tap water (this sometimes takes a bit
of doing).
- The use of Prilosec, by prescription, which limits acid
production by stomach cells, has been—as she says—"a
Godsend" in keeping the esophagus comfortable.
- Sometimes pills "get stuck" in swallowing. A
piece of bread is often helpful in getting the pill down.
- Alcohol does not "sit well," and therefore is
not used.
- Cutlery and kitchen equipment is available with thick
rubber handles to aid gripping.
For comfortable sitting
- Straight chairs are more comfortable than deep, easy chairs.
Since the feet often have tight skin and decreased padding,
and toe problems similar to fingers, a good podiatrist should
be seen regularly, to remove calluses, cut toe nails, and
prescribe orthotic shoe inserts if needed. Shoes should
be purchased in shoe stores that specialize in persons difficult
to fit.
- After some experimentation, we found a car-seat and back
combination, which worked well.
Keeping hands warm
- Gloves or mittens of various types for different weather
conditions should be carefully selected by trying on in
stores (not by mail order). Even on a moderately warm day,
a breeze may require glove use. It is suggested that, if
in doubt, take gloves along.
- Plastic bags filled with a chemical that can be activated
to become warm can be used to warm coat pockets.
Bathing
- Bathtubs should definitely have railings and rubber mats.
Sometimes two mats are helpful to allow comfortable exit
from the tub.
- There are also straight and curved handles with sponges
attached available by mail order or in health equipment
stores, which help in lathering and washing.
Sleep aids
- Firm sponge wedges are available that can be put under
the knees for support.
- Sponge "sausages" can be put under the neck
for support.
- Multiple pillows may also be of help to keep the head
more upright.
Dressing
- Long shoehorns may be helpful for putting on shoes.
- Buttoners can be used to close or open buttons.
- Shoes with Velcro® fasteners may be helpful.
General aids
- Avoid any loose rugs or mats that can slip and cause falls.
- Locksmiths have attachments into which keys can be placed
that give a better grip for holding and turning keys.
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