My recent articles in Massage Today on amyotrophic lateral sclerosis have generated a lot of feedback from practicing therapists. I was only able to quote a few people in my last article, but I am posting all the replies here.
Hi Ruth,
I did work with my brother-in-law in the thoracic cavity, trying to expand the intercostals so he could breathe better. I also worked on the traps a lot. They didn't atrophy as quickly as the smaller muscles. I think he just enjoyed being touched. He looked so weak that others may have shied away a bit, for fear of hurting him.
I truly miss him. He was a happy guy and always asked about my life, trying to take his mind off of the disease. He passed suddenly—at least I thought we had longer with him. I'm looking into volunteering my time for the caregivers or patients of ALS, doing massage in his name...that's what prompted the first note to you.
Judy Collins
Hi Ruth,
I am a CMT in Gainesville Virginia who has been doing Hospice massage on ALS clients for over a year on a weekly basis. For us, it is definitely a win-win situation. The client can no longer move or talk, but her eyes sure light up when I enter the room. My client is in a motorized recliner. I spend most of my time working on the scalp, hands and feet. I use gentle compression on arms and legs. Her body is so atrophied there is no muscle tissue to work. In the reclining position, I place one hand under the small of her back and the other hand gently on her abdomen and 'just be' for about 5 minutes. Another technique I have learned to do with her that she obviously enjoys is: again in the reclining chair, bring the heels up to the buttocks. Put one hand between the knees so they are not incurring friction and place the other hand on top of the knees. Gently and slowly rock the knees back and forth as far as possible several times. This movement always invokes a beautiful smile on my client’s face. The nurturing and rocking motion is so very soothing and it has to be good for the lower back and hips.
To know I can help someone in such a horrible situation to feel pleasure is most satisfying to me.
Jill Nixon, CMT
With one gentleman after his first session of some CST and LDT, he was able to move his toes, which he could not do at the time he came in for his session. Afterwards he commented that the session (even though it was done in his electric wheelchair reclined back) gave him a deep feeling of relaxation "That was the most relaxed I have every been."
Let's suppose for the sake of conversation that the vagus nerve is restricted due to a mechanical compression at the jugular foramen. This may have been caused by a blow to the head causing a restriction of the occipital bone. Or this may have been caused by an increased contractability of the neck muscles, such as trapezius or SCM, etc causing a restriction of the occiput or temporal bones respectively. Now that the vagus nerve is compromised it is not able to function optimally. Because of all the different organs the vagus nerve innervates, the function of any one of these organs can then become compromised as well. Let's say, again for the sake of conversation, that because of this the liver then has more difficulty helping the body to digest fats and the ability for the body to absorb and assimilate essential fatty acids is reduced. The body then has less fatty acids available for metabolic functions. If the body then has less resources available it will start to make decisions, hard ones, as to where to ration out the scarce resources to. Does the body send those precious EFA's to the brain, to the endocrine glands, etc.? The body has to make a decision. The end result of this rationing decision may then result in long term problems; perhaps even ALS? This is one hypothesis about ALS and cranial nerve restrictions. Certainly an argument could be made about the lack of freely flowing CSF and spinal nerve health, but to suggest that this is related to a mechanical compression on cranial nerves doesn't quite logically flow. Do you have any thoughts on this?
I think that ALS IS more of a restriction of freely flowing CSF, which results in poor nerve health. What is this restriction from? Well in your Pathology book you state "Two populations carry a higher-than-normal risk in the United States, however: electrical utility workers and airline pilots." In CST I class, students are shown slides of the intracranial membrane system, including one of a Air Force pilot. The comment that accompanies this slide is to observe the beginnings of tears, as viewed as stress lines, in his intracranial membrane (I think the tentorium cerebri). Any how, I have a client who is a flight attendant. She sees me about every 2 - 3 weeks to help her reduce the tensions in her intracranial membrane system that manifest as head pressure, headaches and TMJ problems. The repeated change in pressure that pilots, flight attendants, submariners, scuba divers, etc. under go places tremendous stress on that membrane. And like anything, the more repeated stress it is placed under the quicker it is to wear out.
Part of the result of the intracranial membrane (ICM) of wearing out is it looses its suppleness and can become tough and tight and inflexible. When the ICM becomes tight then it can not respond as quickly and as easily to changes in any pressure or movement of the cranial bones. This then can directly impinge upon any of the cranial nerves or blood or lymph vessels and directly restrict the flow of the CSF. Then when the brain and spinal cord and nerves are not able to be properly nourished with fresh CSF and when metabolic wastes are not able to be chelated by the CSF and carried away the brain and body are not able to optimally function.
I think this is where our "diseases with unknown cause/origin" such as MS, ALS, etc. result from. So with regard to CST, our whole goal is to help restore the body's ability for its own healing mechanism to come forth and heal itself (the client). The treatment process is determined by what the client's body shows or tells the therapist. We listen to the body and treat what we find, regardless of the "diagnosis." I hope this helps...
Julie McKay, CMT, CST, BFRP
Ruth,
Having been a secondary caretaker of my brother-in-law, who passed away with
ALS, I felt my personal and professional experience could be of help to
others. Randy had the more aggressive, bulbar form of the disease and lasted only
2 years and 8 months from the onset of symptoms. He was an ideal athletic
specimen when he was first diagnosed and by the time he passed, he was skin and
bones trapped in an unresponsive body.
From the beginning, Randy told us the massage, which was primarily Swedish,
was a great relief and helped reduce fasciculations and spasticity for days
after receiving. As the symptoms progressed, I took a different approach and
incorporated a more vigorous massage with stretching and craniosacral therapy
to help alleviate the soreness created by immobility.
In the advanced stages, when there was little muscle tissue left, it was
very important that all the work was focused and gentle as to not alter the
spinal column which had collapsed in on itself. A sudden movement could cause him
excrutiating pain and because he lost his ability to speak after the first
year, it was essential that I watch his facial expressions for response.
At the end, he was in such agony that nothing offered sustainable relief
but, he responded to gentle touch along with hand and foot massage.
My experience with Randy was truly life altering. I felt honored to have
been able to provide any relief that I may have. For those considering to take
on this task, I suggest that you learn the disease prior and be prepared to
witness incredible pain and suffering. The benefits to the client, however, are
greatly worth the effort.
Cassandra Curley, LMT
Ruth -- I had to play "catch-up" with the always-interesting information
in Massage Today. My subscription was accidentally cancelled ... long
story ... and now I'm back on track.
I read your 1st article about ALS with great interest ... as my mother
died of ALS and a carcinoid tumor (another weird entity the M.D's dreamt
up).
What upsets me about articles such as yours is ... never does anybody
even mention the emotional component of this disease ... which I (in all
my wisdom ... having dealt with only my mother's "case" -- and this was
prior to massage therapy training) -- I think stress may well be THE
major component and it is always ignored. Every article I've read since
continues its silence on the emotional aspects of this condition. I
continue to be baffled.
In my mother's case ... the first of five of Johns Hopkins' finest
mentioned she has a burned out nervous system. It took them (as best I
recall) nearly a year LATER to finally "decide" she has ALS ... and
accidentally "discover" the carcinoid tumor ... despite my mother
repeatedly telling them ... "there's something in here" ... pointing to
the exact location of the tumor in her upper lung. (You are already
tuned in to my obvious anger with the traditional medical profession.)
My mother lived with a seriously emotionally abusive (and later diagnosed
as emotionally disturbed) husband (my father) to the very end. EVERYbody
in my family thinks this abuse was THE cause of her illnesses. The
doctors at Hopkins (to my knowledge) NEVER asked one word about her
emotions ... NEVER.
Now ... I may be prematurely "venting" as your August installment has not
yet arrived. If you are addressing the emotional aspects of ALS ...
ignore my e-mail. If, however, I have raised one aspect of this
condition you have not addressed ... could you please explain your
position to me?
In my massage therapy practice -- I have been exposed to two or three
multiple sclerosis clients. Again -- I feel the emotional component of
this disease also is ignored. Obviously, my exposure to this condition
is very limited.
I'll be interested in your response ... either by e-mail or in print.
Thanks for listening.
Elaine C. Ashton
Ruth,
Good work on the "Dealing with Pathologies" piece in Massage Today. I'm
presently treating a dear friend/patient who I was treating well before
his recent dx with ALS.
The work he requests is very very deep, digital, focused work on his
forearms, and legs -- areas that are progressively getting weaker and
ache deeply. I don't ever give him a "full body Swedish."
Interestingly, the areas on his body that were very hypertonic "before"
when I was treating him remain the same and do not hurt any more than
before.
He has one of those microphones so I can understand him but both his
breathing and his speech are progressively deteriorating.
I'm just responding to you quickly but would be willing to share
anything else you'd like to know, if you let me know what you need.
Thanks, again, for asking
Charlotte
Dear Ruth:
I must have been snoozing when the last MT came in the mail as I did not remember your call for therapists who have worked with ALS patients.
Four years ago my stepsister, Robin, was diagnosed with ALS at age 48. The diagnostic process started after she was hit in the head by a board that came loose from a deck. She may have had some symptoms before that but she was living away from the rest of the family and was distant from us in more ways than just the miles. Robin had just recently moved back to the state and was getting reacquainted with everyone when the diagnosis came. The first thing that was affected was her speech. Go figure. Robin had always been a motor mouth, talking up a storm to anyone who would listen, calling everyone "dee-ah," using an exagerated Maine accent. This is where massage therapy came in....
On a visit to Robin soon after her diagnosis, I asked if I could do some massage work on her (as teenagers, she always loved me to pluck her eyebrows--thinking back, I think she just loved being touched!). She was excited about the prospect of getting massage and I ended up spending a lot the time that day working on her neck and jaw. After that session, her speech was clearer for many hours. We were all very excited about this and I taught her live-in family how to accomplish the same results. This worked well for a few weeks. She felt that it also helped her with swallowing.
Throughout her illness, I was able to visit weekly and do full body massage. Robin was determined to get on my table every time. Even when she was in a wheelchair full time, she wanted to be on the table and she wanted the full treatment! I would specifically work on areas that had been spasming that week and we also worked on range of motion of her extremities and using that strong mind of hers to try to send the message of movement through to her limbs. Until the end of her life, every time that I was there she wanted me to watch her move her right great toe. She practiced that constantly.
Robin had made the decision to have no intervention in the progression of ALS. She was determined to stay at home and to die at home. She wanted no feeding tube or breathing aparatus. Her 24-year-old son, Johnny, was her full time caretaker and he stayed with her and did every aspect of nursing care for Robin, even after home nurses began to come in to help. I taught him massage techniques to use on her when I was not there and he was religious about doing range of motion and releasing her cramping manually.
When Robin had decided that she had had enough, it had been just 1-1/2 years since diagnosis. At that point she had spent a few days not getting out of bed. She asked the family to the house and she asked me specifically to give her one last full massage session. As I worked on her, family members filtered in and out of the room, visiting. Robin was making her usual groans of delight about the massage she was receiving.
Robin died peacefully two days later with her family around her.
I have now collected a group of "Robin's Angels," massage therapists who go into the homes of people with ALS to massage them. There is no greater reward in this work than to be able to help victims of ALS in this way.
Debra Roof, LMT
Dear One,
My MIL has this problem. She has been slowly declining over the yrs. When
we 1st met 27 yrs ago she could walk a little, do dishes and even sew. Now getting to the toilet, going to bed and getting dressed are her major physical activities. Other than witnessing.....she is one of Jehovah's Witnesses and she preaches door to door. She has an electric wheel chair and a van that someone else drives for her.
In this way she stays active, happy and feels like she is connected to life. I believe this is as important as the massage. Because the muscles atrophy at different rates she sits a bit cock-eyed--she knows this but cannot correct it. The massage I give her isn't much anymore. She cannot get on the table but I do some range or motion for her when I catch her still in the bed. Other times I will work on her neck and shoulders. For her the work has to be light and mostly slow.
Patience plays a major part in this. I also do some reflexology for her again this
needs to be light as well as slow as she cannot tolerate much pressure. She is overwt due to being unable to exercise and being so stationary but neither her hands or her feet have a lot of flesh so in some cases she tells me that I am directly on a nerve -- or do it harder it itches to the bone. As with
any client feed back is important.
AlS Is a very strange disease as it takes so many forms in the
deterations of a person's body. Her muscles in her hands are so floopy that holding a utensil is difficult. She cannot lift a 1/2 lb weight. Light switches are a chore and we added on the handle for the toilet handle so she could flush it using a dowel stick taped to the handle. It works-- she is big on independence and doing what she can herself even if she must struggle to get it done. She lives alone since my father in law past away almost 16 yrs ago. Its been hard for her at times as with any other widow--but she depended on him so much for things that she couldn't do or deal with.
Over working the muscles will cause the muscles to atrophy quicker. She had physical therapists to put her on a schedule that they expected her
to be able to do....it was not designed for ALS people, and she got to where she couldn't stand up...something she can do now.
We found a government program that gives her a chance to hire someone after an evaluation to clean, cook, bathe etc for 56 hrs per week and she gets to hire
whomever she wants. The government finally found a way to spend my tax
dollars That I agree with. This is also cheaper than nursing home care. And she is more independant she says when she wants to eat--sleep.etc.
My mil is one of my best friends. She is 60 now and without her help in 1988 I wouldn't have been able to have gone to school. She and my father in law took on my 2 kids for 4 months while I went to school. So we both have been blessed. I hope these ramblings have helped you in some way to take on any challenges you face in the future.
Happy trails,
Kim Scarbrough
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