A Massage Therapist’s Experience Working with ALS Patients

To complement the MASSAGE Magazine article, “Ease the Journey: Massage at End of Life,” by Ann Catlin, O.T.R., L.M.T., in the July 2013 issue. Article summary: A paramount concern in hospice is alleviating pain. Massage therapists have much to contribute to ease pain and suffering on many dimensions. Physical, psychological, emotional, social and spiritual dimensions equally impact the quality of life.

by Carlton Owens

A Massage Therapist's Experience Working with ALS Patients, MASSAGE MagazineALS (amyotrophic lateral sclerosis) or Lou Gehrig’s disease causes muscle weakness and atrophy throughout the body. Individuals may ultimately lose the ability to control all voluntary movement; although the muscles responsible for eye movement are usually spared. The majority of people with ALS will maintain sight, hearing, touch, smell and taste.

The onset of ALS is insidious, with muscle weakness or stiffness as early symptoms. Progression of the weakness, wasting and paralysis of the muscles of the limbs and trunk, as well as those that control vital functions such as speech, swallowing and breathing, generally follow.

In some individuals, twitching (fasciculation) and cramping of muscles, especially those in the hands and feet, may also occur. Early on, ALS symptoms may be so slight that they are frequently overlooked. See www.als.org for more information.

The first ALS patient I worked with had almost no symptoms of the disease. He had no issues with vocal communication, could move his limbs freely, grip with his hands and walk without any assistance. I saw him in his home once a week and because there was no room to set up my massage table, he was usually lying in bed or relaxing on a couch or chair. I would provide him with an hourlong Swedish relaxation massage with some focus around his hips and shoulders, and by the time I was finished, he was breathing deeply, visibly relaxed and smiling. I believe he had a great increase in his overall sense of well-being and this benefit lasted for two to three days after our session.

When he became bedbound, his lack of mobility caused stiffness and cramps throughout his body. His legs and hips were the most affected, and the Swedish relaxation massage was not enough to address this discomfort. I added some passive range-of-motion (PROM) techniques to lubricate his joints and lightly stretched the muscles in his legs and hips, relieving his stiffness and muscle cramps.

The benefit only lasted a couple of days and his discomfort would still be no better than it had been before our last session. I decided to work with him twice a week, with the hope it would extend the benefit for a longer period of time. After the first week, he had almost no stiffness or muscle cramps between sessions.

The extra day a week also allowed me to spend time on other problems areas that would not have received enough attention otherwise. He had increasing and persistent pain in the muscles running along either side of his spine. The pain increased in his hands and fingers as they had begun to contract, and there was a decrease in range of motion (ROM) of his ankles. While lying on his back, his feet could no longer flex, so his toes could point to the ceiling.

I began to focus most of our sessions on these problem areas. For the hands, I would loosen up the wrist and open up the palm as much as was comfortable for him before isolating each finger. For his ankles, I would start with deep-tissue massage in his calves to try to loosen the pull of his Achilles tendon, and then spend some time working on the soft tissue around his ankles before lightly flexing and rotating his feet.

Since trying to turn him on his stomach or side would cause too much discomfort or even pain due to his inability to move, I would access the muscles along his spine and while in a deep crouch or sitting in a chair, I would slip my hands, palms up, between his back and the bed and work along both sides of the spine from his pelvis to his neck. He always felt pain-free and had a good night’s sleep after each session.

My massage protocol for him did not change when he lost his ability to speak and could only communicate through eye movement; although it did make it harder and more time consuming to position him as comfortably as possible after each session. Even though he was paralyzed, he still had his sense of touch.

If an arm, leg of finger was left in an uncomfortable position, he would stay in that position until he was able to get someone to understand he was in discomfort and why. After a picture board was introduced, he could use his eye movement to communicate faster and more effectively, which helped me keep him as comfortable and pain-free as possible until he passed away.

ALS patients all tend to respond very well to PROM techniques in the shoulders and hips. However, should they lose the ability to move their arms and legs, there is a great risk of injury to those areas. I have a client who can no longer move his arms and became upset when I told him I could no longer provide him with PROM to his shoulders to relieve his discomfort. We worked together over a couple of sessions to find a safer alternative to PROM to reduce or hopefully completely relieve his shoulder discomfort.

With his help, I developed a protocol that had the same effect as using PROM by working on the muscles that support his shoulders. I addressed each shoulder muscle by employing gliding, compression, friction and vibration techniques. This protocol was time consuming, yet effective in reducing the client’s discomfort. I found I did not need to spend as much time on this protocol to keep the benefit lasting from session to session.

A common complaint with ALS patients—and, in fact, with many of my clients with decreased mobility—is a constant feeling of cold in their extremities, mainly in the hands and feet. The massage techniques I found useful for this are compression, gliding and vibration.

For the feet, I start with the upper leg by gliding from the knee all the way up to the hips and, if possible, addressing all sides of the upper leg. After I feel the limb begin to warm under my hands, I then start compression and end with vigorous vibration using the same progression I employed for the gliding technique. I use the same protocol for the lower leg, working up from the ankle to the knee. I finish with a massage and vigorous rubbing to the feet. All of these techniques should be used within the client’s comfort level. My goal is to hopefully increase circulation, so the client’s feet feel warmer.

However, the benefit may only last for a couple of days. A caregiver who is willing to rub the client’s feet on a daily basis may extend the benefit until our next session.

Being mindful to not become too rigid in my massage techniques and relying heavily on client feedback help keep my techniques fluid and give me the ability to customize massage to each individual.

Carlton Owens has been a massage therapist for more than seven years with Horizon Hospice and Palliative Care in Chicago, Illinois (www.horizonhospice.org). While ALS is not the most common terminal disease he has tried to manage over the years, his experience with ALS patients has taught him about providing comfort through massage for hospice and palliative care patients.

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