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Working with Multiple Sclerosis Patients

By Ruth Werner, LMP, NCTMB, Massage Therapy Foundation President

Dear Readers:

You've done it again: I put out a request for input, and you came through in a big way. December's article on central nervous system dysfunction seemed to hit a cord with many therapists, so for the next couple of columns I will respond as best I can.

Although I had feedback on several issues related to central nervous system disorders, the majority of respondents requested information on multiple sclerosis (MS). This is a mysterious disorder; its population distribution is unusual, its progression is unpredictable, and its diagnosis is often a particular challenge. Patients with MS can benefit greatly from carefully managed massage, however, and most therapists probably have some clients who live with this disease.

This article will provide some brief information about how this disease develops and whom it affects, followed by a discussion of how various types of bodywork might and might not fit into the picture.

MS: who gets it? The highest incidence of MS is among Caucasian people who live in Northern or extreme Southern latitudes, or who lived there for the first 15 years of life. It is generally diagnosed in patients somewhere between 20 and 40 years old. Women are diagnosed with the disease approximately twice as frequently as men. It affects about 300 thousand Americans, with about nine thousand new diagnoses each year.

MS: what happens in the body? MS often works in cycles of inflammatory "flares" followed by periods of remission. During flares the myelin is damaged, probably by specific types of white blood cells, and is replaced by scar tissue. MS usually affects the optic nerve, brain stem, cerebellum, and spinal cord. During remission, inflammation subsides, and some regeneration of myelin may occur. In this way, MS patients may lose some neurological function during flares, but regain some or all of it during remission. The cause or causes of MS remain a mystery. Leading theories suggest that a combination of factors is at work: exposure to some pathogen that stimulates an ongoing immune system attack, environmental factors, and genetic predisposition may all be part of the picture. At this point no specific genetic, environmental, or pathogenic factors can reliably predict the incidence of multiple sclerosis.

MS: what does it look like? This disease is sometimes called The Great Imitator because its initial symptoms can look like a variety of other diseases, depending on what area of nerve tissue has been affected. The order with which symptoms appear also varies greatly from one person to the next. Some of the most dependable signs and symptoms include:

• Weakness, debilitating fatigue
• Numbness or tingling
• Loss of bladder control
• Difficulty walking
• Depression
• Spasm
• Optic neuritis
• Sexual dysfunction
• Loss of cognitive function
• Digestive disturbances

MS: how does it progress? The progression of MS is highly unpredictable. It has a few characteristic patterns, but some patients move from one pattern type to others within their disease process. Some of the basic patterns are as follows:

• Relapse/remitting (R/R): Definite periods of flare are followed by long periods of remission. Years may pass between episodes. This is the most common pattern.
• Primary progressive (PP): Patients show a steady decline in function; episodes of flare are frequent.
• Benign MS: Patients has only one flare in their lifetime.
• Malignant MS: This is a rapidly progressive form of the disease, with little respite (if any) between flares.

MS may also present as a combination of the R/R and P/P varieties.

MS is not a terminal disease in and of itself. MS sufferers generally have a lifespan about six years shorter than the average, although that statistic may improve as new medications prolong the time between flares and limit central nervous system damage. People who die prematurely from MS are usually immobile, and they fall prey to an opportunistic disease such as a kidney infection, urinary tract infection or pneumonia.

MS: what about massage? This is where it gets interesting. I've received letters from some people asking, "what do I do for this type or that...?" and letters from others saying, "I've had success with this approach..." I couldn't be happier to put all of this information together here in this article.

First of all, let me offer some words of warning. In its acute, or "flare" stage, MS is an inflammatory condition. True, the inflammation is happening in the CNS where we don't have access, but the general rule for massage and acute inflammation is to let it pass.

During an MS exacerbation, the body has a lot of activity to process. In my opinion (and absolutely anyone is invited to disagree), I think it's a better idea to let the dust settle before adding any more input in the form of massage. Some varieties of energetic work may be appropriate during MS flares, as long as the process is respected and the client is not overwhelmed or overchallenged by the stimulus being supplied.

During remission, however, we have a different story. The level of function a person achieves during remission depends on the severity of the flare, and how deeply the myelin was affected. If it was only a superficial attack, the damaged myelin may grow back and no permanent changes may occur. If it was a more intrusive flare, however, some amount of permanent damage may accrue to the nerve tissue, resulting in muscle weakness, sensory changes including parasthesia ("pins and needles"), or even complete numbness. This is where massage (as well as other therapeutic modalities) may have a profoundly positive impact. While we generally say, "if a client can't feel it, we shouldn't try to change it," some massage therapists have found that working deeply and specifically on the antagonistic muscle groups of isolated numb or weak muscles of MS clients yields exciting results.

Here is what one therapist (Jim McFarland of Virginia) has found:

I usually don't work directly on the numb region, as the area of numbness is usually not what needs the work. For example, working on the individual muscles of the extensor digitorum and the extensor and abductor pollicus is generally what I've done to remedy numbness in the palmar side of the first three digits. This wasn't the same thing as treating a numb area directly, and my treatment was more along the lines of a deep stripping massage and/or ischemic compression with simultaneous contraction of the individual fingers (I usually have them tap the fingers as if they are playing the piano.) It is not painless, but it brings sensation back with a couple of passes -- usually within 90 percent of the unaffected hand, and they were starting with perhaps 10 percent (self-reported). I wouldn't recommend that anyone treat MS patients on directly affected areas without an advanced knowledge of nerve structures; if you don't know what nerves innervate the tissues you are treating, you could be endangering your client. But with this knowledge, a great deal of sensitivity, hesitation, and caution, it is possible to work on clients in all stages of MS for excellent results.

When a client regains sensation and motor function in her hand or arm, even if it's only until her next period of flare, that represents a significant improvement. Please note: I am not saying that we should be doing deep friction on all the numb areas that our clients with MS may have - this is just a suggestion, based on clinical experience, that some deep work done near, but not on areas of numbness can create some positive results. These results seem to be temporary, but repeatable.

Another reader, Michael Eisenberg of Washington State shared with me that Thai massage, which he describes as being just as beneficial to give as it is to receive, has helped him to manage his own MS:

I have been practicing and teaching Thai massage for the past 12 years. I have been dealing with the ravages of MS for the past six years. I have always loved Thai massage for the good workout I received while working on my clients; I stretch my body as I stretch the body of my client. I think doing Thai massage for all these years has kept my body limber. I have been losing function over the past several years and the massage gets harder for me to do all the time, yet I still enjoy it. I also now more then ever appreciate the benefits of receiving massage, especially Thai massage, as my body seems to be getting stiffer. I feel that having someone else stretch my body and open up my joints is a big help in keeping me limber.

And yet another reader has a client with very advanced MS who has lost most of the function in his legs. This is what she has to say:

I've been offering joint mobilization, Swedish massage, reflexology, and lymphatic drainage on his ankles and legs. The swelling has diminished. Perhaps a change in medicines was part of this change; we aren't sure. I've also been doing Swedish and deep tissue work, and ortho-bionomy on his neck. That has relieved some of the cramping in the jaw. He is also able to see connections between muscles as I access origin and insertion points. Basically, I'm finding that touch is important because tension kept building within his body. Massage has diminished this cumulative tension creating a greater ease within his body. More stretching, some yoga and an increasing awareness of repetitive holding patterns of the head and neck have helped.

All of these wonderful stories point in the same direction: massage has a lot to offer clients who live with MS, as long as some basic principles are kept in mind: avoid mechanical or manipulative work during periods of flare; respect numbness; only work deeply where the client has sensation; and monitor your results carefully so that you can continue to make positive choices for your client's needs.

Readers who are interested in learning more about MS, either for themselves or for their clients, would do well to visit this website: www.mic.ki.se/Diseases/. This site has an extensive list of recent articles on just about any disease you could think of. MS is listed under Neurological Diseases as a demyelinating disease.

In next month's article, I plan to discuss another aspect of CNS dysfunction: working with spinal cord injury survivors. I've had several questions from readers about "do's" and "don'ts" for these clients; what advice do you have for massage therapists?

Until then,

Ruth Werner, LMT, NCTMB