Practical Tips for Living with Scleroderma

By Claude Springer, D.D.S. (originally published in Scleroderma Voice, Winter 2000–2001)

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:

  1. We removed many of the round doorknobs in our house and replaced them with lever handles.
  2. We took all her pants to the tailor and had Velcro® fasteners sewn on for easier opening and closing.
  3. We replaced many light switches with rocker-arm types, which need less of a push than conventional switches.
  4. We tried out various types of cups and mugs until we found the size and handle configuration for easiest cup pick-up.
  5. We found that eliminating saucers under cups made pick-up easier.
  6. Both at home and in restaurants, I cut up some of the meats and vegetables that are hard for her to manage.
  7. 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.
  8. We have placed tong-like tools around the house to help her pick up small objects.
  9. Items in drawers and in the refrigerator are placed near the front for easier access.

For problems associated with eating and drinking

  1. In restaurants, we request not only water without ice, but room-temperature tap water (this sometimes takes a bit of doing).
  2. 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.
  3. Sometimes pills "get stuck" in swallowing. A piece of bread is often helpful in getting the pill down.
  4. Alcohol does not "sit well," and therefore is not used.
  5. Cutlery and kitchen equipment is available with thick rubber handles to aid gripping.

For comfortable sitting

  1. 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.
  2. After some experimentation, we found a car-seat and back combination, which worked well.

Keeping hands warm

  1. 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.
  2. Plastic bags filled with a chemical that can be activated to become warm can be used to warm coat pockets.

Bathing

  1. Bathtubs should definitely have railings and rubber mats. Sometimes two mats are helpful to allow comfortable exit from the tub.
  2. 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

  1. Firm sponge wedges are available that can be put under the knees for support.
  2. Sponge "sausages" can be put under the neck for support.
  3. Multiple pillows may also be of help to keep the head more upright.

Dressing

  1. Long shoehorns may be helpful for putting on shoes.
  2. Buttoners can be used to close or open buttons.
  3. Shoes with Velcro® fasteners may be helpful.

General aids

  1. Avoid any loose rugs or mats that can slip and cause falls.
  2. Locksmiths have attachments into which keys can be placed that give a better grip for holding and turning keys.