Dear Readers:

My last article on Parkinsonism generated more feedback than usual, and it was wonderfully supportive of the positive influence massage can have on the lives of people who live with this disorder (www.massagetoday.com/archives/2005/03/14.html). I heard from so many people with such wonderful things to offer that I decided, instead of moving on to another topic, I'd recap what some of they had to say. The fact that I am listing these resources and techniques is not an endorsement, and I haven't explored them myself; however, I encourage interested readers to get more information from the organizations provided here. My heartfelt thanks to all those who wrote, and in particular to the people quoted below, who quickly and enthusiastically gave me permission to use their letters in this article.

I have worked with many people over the years with Parkinson's and other chronic illnesses both in my private practice, and as part of my work as supervisor of the massage therapy program at HospiceCare of Boulder and Broomfield Counties in Colorado. Through this work I have developed a particular style of bodywork called Comfort Touch, which is safe and appropriate for the elderly and the ill, and easily adapted for those in medical settings.

I demonstrated on a volunteer as she sat in a chair, explaining the rationale behind the techniques I use (slow, broad, encompassing pressure directed into the center of the part of the body being touched, e.g., nurturing acupressure), and then I had the participants practice a simple sequence - shoulder, arms, hands - on each other. They were all so enthusiastic about the work. Those receiving the touch felt it to be very relaxing, and the givers of Comfort Touch felt it enjoyable to give. In just a few minutes, they felt calmer, more grounded, and a bit more hopeful in coping with their disease.

Mary Kathleen Rose, BA, CMT
www.comforttouch.com

I am surprised that you did not mention Daybreak Geriatric Massage Institute in your article. This would probably be of interest to some of the readers. We have been the certified geriatric work modality since the early 90s, and have published many articles on working with many challenges, including Parkinson's and ALS. We teach beginning and advanced levels of classes. I, along with four other teachers (all are RNs or OTs, as well as massage therapists), teach about 60 workshops per year both nationwide and internationally.

Sharon Puszko, PhD, CMT
www.daybreak-massage.com

Shortly before my husband was diagnosed, I took several short-term training courses in massage therapy. I began giving him regular weekly massages. Not much happened. He felt a lot better after the massages, but not really that much better than you or I would feel.

About a year later, I took a weeklong massage course, where in the process of the training, I gave and received a massage every day. It was that daily massage that made an impression on me. I felt so much better after seven days of regular massages that when I got home, I told my husband that was the program I felt he should go on - daily massage (by the way, my husband takes no chemical drugs to treat his condition). As I am sure you can guess, the daily massages I gave him brought about remarkable changes, including restoration of facial expression; 90 percent elimination of tremor; sleep patterns returned to normal; handwriting improved; aches and pains almost completely reduced; and continued improvement of joint movement.

Although the PD was still progressing, we both felt that we had slowed its progression down. I continued with the daily massages for one year, after which time I discovered the FSR. (Forceless Spontaneous Release put forth by the Parkinson's Recovery Program in Santa Cruz, Calif.) In the early days of his condition, the daily massages made all the difference. I know they helped him and he knows they helped him. There were three factors that were essential that I would like to share with you: 1) Deep work was detrimental; 2) Very slow movements were essential; and 3) One massage a week didn't do a thing. He needed at least one massage a day.

Carmelene Siani

My mother is one of many Parkinson's patients undergoing treatment. There is discussion online at , which can be browsed, joined or queried. They have found that studies indicate in Parkinson's the brain areas thought to be dead are dormant, with undifferentiated cells, which can be brought back and the patient becomes "symptom free," undiagnosed as having Parkinson's - the best one can say, because the medical establishment categorizes Parkinson's as "incurable." This categorization itself is quite debilitating for people who have the condition, which the practitioners at pdrecovery.org prefer to call "reverse of the stomach channel."

Kate

I was a massage therapist for 21 years. When I moved back into my parents' home to help them; one of the reasons that help was needed was my father's Parkinsonism. His lower legs and feet were in great need of massage but were exquisitely sensitive. I began by working gently on his quadriceps, which let him understand the pressure and motions that would eventually be used on his calves and feet.

I proceeded after a week to "shank work" and finally incorporated his feet. He was happily surprised at how his tolerance for touch increased, and I cherished the half-hour sessions for all that I received during them.

Thank you for your article in Massage Today. In addition to informing your readers, it led me down a lovely memory trail. PWP rely upon a sense of humor to help them meet challenges. As "they" like to write in their listserv group: always remember, "People with Parkinson's are the real movers and shakers of the modern world!"

Deanne Charlton, retired massage therapist

To all of these contributors, I owe great thanks for their generosity and dedication. I am humbled to be in the same business with all of you.

Readers: Next time I will continue in the CNS dysfunction vein with an article on amyotrophic lateral sclerosis, or Lou Gehrig's disease. I'd like to hear from anyone working with clients who live with this disease to share your experiences with other readers. Please write to me and let me know what you do and why, if it works, and why you think so.

As always, many blessings,

Ruth Werner, LMP, NCTMB