At the first meeting of the Massachusetts Chapter at Plum Island, Massachusetts, September 19, 1993, forty-five adults and ten children came together to meet each other and share experiences of living with VHL. People came from Massachusetts, New Hampshire, Rhode Island, New York, and Florida.

For some people, it was the first time they had met anyone else with VHL. Even for members of large families, it was usually the first time they had met another VHL patient outside their family. People began sharing stories in the parking lot before they came inside.

There were people there with a variety of experiences of VHL, and with a variety of abilities. One brother and sister, twins age 59, were themselves a good example. They have had the same number of surgeries, in the same places. The brother is doing just fine; the sister has serious walking and speech impairments. Why? We were all eager to learn from one another. What have you been through? How well did it go? What did you learn? If you could do it again, would you have done anything differently? The "pioneers" who have had the most difficulty can provide the richest learning for the rest of us.

Jim Sicard and Mary Lou Egan, massage therapists, gave a talk and demonstration on the use of massage therapy in dealing with the stresses and pains of VHL. It need not necessarily be a professional massage; family members can provide massage therapy to one another. It is a way of communicating your caring, as well as calming, soothing, and relaxing muscles and nerves. As Jim reminded us, the most important ingredient in a therapeutic massage is intention. If you approach the person you are massaging with sincere intention to relax them and be helpful, that intention will be communicated through your hands.

The person receiving the massage should lie comfortably on a bed, or well-padded floor, in a place without drafts, where they won’t be chilled. The person giving the massage should be working in a comfortable position. Some quiet, relaxing music can add to the experience.

The hands move most easily over the skin if you use some oil. Creams don’t work as well because they absorb into the skin or become sticky. A pleasant light oil is best. There are oils made specifically for massage, but even olive oil or corn oil from the kitchen work just fine. Use a small amount, and warm it a little in the oven or in your hands so that it is not cold when it hits the skin.

For people with VHL, there are a few safety precautions. If there are any spinal tumors, you should not put pressure on the spinal column. This is particularly important if there has been any spinal surgery. If there has been any brain surgery, be particularly careful not to put pressure in areas near incisions where the bone may be weakened. And most important, don’t do anything which causes pain.

In the area of any incision, it is best not to press deeply. Long soothing strokes are nearly always appreciated. Light circular movements to "mobilize" the scar can be helpful in loosening the scar adhesions which may bind skin to muscle and increase tension.

Jim demonstrated a few basic strokes — long gliding strokes (effleurage) with flat hands from shoulders to hips, or down the full length of any other muscle; kneading the muscles (pétrissage) as you would knead bread dough; or working the muscles in small circles to relax them. It not only relaxes the person, it assists in lymph drainage and helps to rid the muscles of waste products.

Sometimes when muscles are tense or sore, there will be some minor discomfort when the muscles are first kneaded to help them relax. This is normal. If there is any real pain, though, it is time to stop or change to a lighter soothing rubbing stroke.

Altheada J. from New York was timid to try, but agreed to the experiment. She has been managing quite a bit of pain since her second spinal cord surgery in 1989. While she was hoping that it would help, she was worried that it might make the pain worse.

Mary Lou worked closely with Altheada and her husband, Fred, experimenting with different strokes and angles until they determined what was the most soothing and what to avoid. Even though Altheada has no feeling in her legs, there is some deep muscle response, and it proved very soothing to her to have her legs massaged. Mary Lou also touched, just using warm hands and energy. She suggested a massage therapist experienced in Reiki massage.

When Jim first began studying massage and needed someone to practice on, he found a ready subject in his brother Jay. Jay, age 28, has been dealing with pain since his brain surgery in 1975. When Jay first complained of headaches, his father thought he was looking for a way out of returning to school. "I always hated school," Jay admits. But they proved to be much more than imaginary, and even more serious than the doctor's first diagnosis of migraines.

After the removal of Jay’s brain tumor, they thought the road ahead would be clear. But a second brain tumor was found in 1977, and he was diagnosed with VHL. Jay is the first person in his family to have VHL. DNA tests of his parents, brothers, and sister are all negative. In 1984 Jay underwent radiation treatment for control of his spinal tumors. There are more spinal tumors, but doctors are not recommending treatment unless symptoms become more severe. Jay lives year round in Florida, where his parents spend their winters. He and Jim attended the Massachusetts meeting while visiting their parents at their summer home in Massachusetts.

Jim and Jay soon learned that massage was an important ingredient in Jay's pain management. Soothing away the stresses of daily life, and relaxing the tension of the muscles around the pain, significantly reduce his discomfort. They were glad to share what they have learned about massage, and to share other experiences at the Alliance meeting. "The meeting gave us a chance to compare notes, compare histories. It was a chance for comparison, and also for compassion."

Our thanks to Mary Lou Egan of Interlocks Salon, Newburyport, Massachusetts; Jim Sicard, Daytona Beach, Florida; Evelyn and Chuck Sicard, and Tom Salemi, reporter for the Newburyport Daily News.

As published in the VHL Family Forum 1:4, December 1993. For permission to reprint, please contact the VHL Family Alliance at editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.