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Amyotrophic Lateral Sclerosis Disease (ALS)
Hi! I have a friend that has been diagnosed with ALS. His progression is moving very quickly. I was wondering if anyone has given massages to people with this disease and what was the best way to go about it and what worked best for them. My friend is in a lot of pain - legs, neck, back, etc. and is have many panic attacks - just want to help him out.
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Replies to This Discussion
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Permalink Reply by Susan G. Salvo on
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As you know, amyotrophic lateral sclerosis is the degeneration of motor neurons leading to secondary demyelination. This process leads to a generalized paralysis and eventually, the affected person is left immobile.
The disease usually begins with weakness and atrophy of the hands, forearms, and legs, spreading to involve most of the body. It progress to paralysis with no remission. Eventually, the person has difficulty with speech, chewing, swallowing, and breathing; a mechanical ventilator (breathing machine) is required in advanced stages.
Current treatment is directed at maintaining optimal quality of life and involves a team of caregivers (respiratory therapist, nutritionist, speech pathologist, physical or occupational therapist, massage therapist, psychologist, social worker, etc).
Because ALS is a debilitating disorder, your massage is geared toward palliative care (comfort care).
Inquire about positions that are most comfortable for him or her. This may include the use of cushions or use of alternate positions, such as seated or side-lying.
If your friend uses a wheelchair, massage can be done while in the chair. Relaxing massage sessions using light gliding strokes and gentle kneading are most beneficial. Passive stretching and joint mobilizations should be omitted or only cautiously applied, as people with mobility impairments often have compromised bone integrity.
If (or when) your friend is unable to speak well, devise method on non-verbal communication. This may be as simple as raising a finger or blinking the eyes once to indicate “yes” to a question, or raising two fingers or closing eyes to indicate “no” to questions.
If your friend has a panic attack during the massage, assist him/her into a sitting position while maintaining the drape. Encourage slow, deep breaths. Have them focus on the process of breathing to help distract them from their panic symptoms.
Use a slow, soft, soothing voice; your movements should be slow, deliberate, and reassuring.
Remain with your friend until the episode resolves and he/she may become more anxious if left alone.
After the attack, it is best to postpone the rest of the massage for another day.
Good luck and I hope this helps.
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Permalink Reply by Kerry Tierney on
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Hi Susan,
Thank you so much. Its nice to hear from someone who is familiar with this as I have no experience with this disease. Have a great day. I appreciate your reply!
Susan G. Salvo said:As you know, amyotrophic lateral sclerosis is the degeneration of motor neurons leading to secondary demyelination. This process leads to a generalized paralysis and eventually, the affected person is left immobile.
The disease usually begins with weakness and atrophy of the hands, forearms, and legs, spreading to involve most of the body. It progress to paralysis with no remission. Eventually, the person has difficulty with speech, chewing, swallowing, and breathing; a mechanical ventilator (breathing machine) is required in advanced stages.
Current treatment is directed at maintaining optimal quality of life and involves a team of caregivers (respiratory therapist, nutritionist, speech pathologist, physical or occupational therapist, massage therapist, psychologist, social worker, etc).
Because ALS is a debilitating disorder, your massage is geared toward palliative care (comfort care).
Inquire about positions that are most comfortable for him or her. This may include the use of cushions or use of alternate positions, such as seated or side-lying.
If your friend uses a wheelchair, massage can be done while in the chair. Relaxing massage sessions using light gliding strokes and gentle kneading are most beneficial. Passive stretching and joint mobilizations should be omitted or only cautiously applied, as people with mobility impairments often have compromised bone integrity.
If (or when) your friend is unable to speak well, devise method on non-verbal communication. This may be as simple as raising a finger or blinking the eyes once to indicate “yes” to a question, or raising two fingers or closing eyes to indicate “no” to questions.
If your friend has a panic attack during the massage, assist him/her into a sitting position while maintaining the drape. Encourage slow, deep breaths. Have them focus on the process of breathing to help distract them from their panic symptoms.
Use a slow, soft, soothing voice; your movements should be slow, deliberate, and reassuring.
Remain with your friend until the episode resolves and he/she may become more anxious if left alone.
After the attack, it is best to postpone the rest of the massage for another day.
Good luck and I hope this helps.
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Permalink Reply by Lorrie J. LMT, CKTP on
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I have given massage to an ALS patient. What seemed to give the best relief him was long deeper strokes and when anxious he loved to have his head massaged. Also his feet became quite edematous and massage helped move that fluid a bit. He tolerated all massage very well but I concentrated on neck and shoulders as they were being strained by his forward posture. It will depend on how severly affected you client is they may or maynot be able to get out of a wheel chair and you would have to adapt to that. Be prepared to adapt your massage to their ability to recieve it. You may need to go from table to wheelchair to bed as they become weaker. Also be aware if they have had a gastic tube placement into their stomach as you will need to use caution around it. If they are unable to speak work out a hand signal with them to let you know if they are comfortable to just to answer yes/no questions, thumbs up or down worked for us. Often times ALS clients cannot swallow their own saliva, so making sure they have a small towel handy if they are able to lie prone is helpful. Just a couple of thoughts, this is an ever changing degenerating disease you must be flexable with your massage ideas. I feel very blessed to have been able to help my friend through his journey with this terrible disease, I knew that as others around him were feeling helpless, I had something to offer. I miss him terribly.
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Hi Lorrie, Thank you so much for your reply - that is a big help. It certainly is a devasting disease!
Kerry Tierney said:Hi Susan,
Thank you so much. Its nice to hear from someone who is familiar with this as I have no experience with this disease. Have a great day. I appreciate your reply!
Susan G. Salvo said:As you know, amyotrophic lateral sclerosis is the degeneration of motor neurons leading to secondary demyelination. This process leads to a generalized paralysis and eventually, the affected person is left immobile.
The disease usually begins with weakness and atrophy of the hands, forearms, and legs, spreading to involve most of the body. It progress to paralysis with no remission. Eventually, the person has difficulty with speech, chewing, swallowing, and breathing; a mechanical ventilator (breathing machine) is required in advanced stages.
Current treatment is directed at maintaining optimal quality of life and involves a team of caregivers (respiratory therapist, nutritionist, speech pathologist, physical or occupational therapist, massage therapist, psychologist, social worker, etc).
Because ALS is a debilitating disorder, your massage is geared toward palliative care (comfort care).
Inquire about positions that are most comfortable for him or her. This may include the use of cushions or use of alternate positions, such as seated or side-lying.
If your friend uses a wheelchair, massage can be done while in the chair. Relaxing massage sessions using light gliding strokes and gentle kneading are most beneficial. Passive stretching and joint mobilizations should be omitted or only cautiously applied, as people with mobility impairments often have compromised bone integrity.
If (or when) your friend is unable to speak well, devise method on non-verbal communication. This may be as simple as raising a finger or blinking the eyes once to indicate “yes” to a question, or raising two fingers or closing eyes to indicate “no” to questions.
If your friend has a panic attack during the massage, assist him/her into a sitting position while maintaining the drape. Encourage slow, deep breaths. Have them focus on the process of breathing to help distract them from their panic symptoms.
Use a slow, soft, soothing voice; your movements should be slow, deliberate, and reassuring.
Remain with your friend until the episode resolves and he/she may become more anxious if left alone.
After the attack, it is best to postpone the rest of the massage for another day.
Good luck and I hope this helps.
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Permalink Reply by Anita Bakke on
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Hi Kerry,
My best friend of 30+ years started her ALS journey 4 years ago. It came on her quickly also and within 6 months of diagnosis she was unable to use her hands and was having trouble with her speech. This disease usually moves from the feet up but in her case is has gone from her head down so communication with her hands was not possible very early.
I treat medically frail patients in various forms and stages of cancer, ALS, Parkinson’s, MS, and elder issues like arthritis, osteoporosis, etc. I have found several modalities to be useful to assist these patients. Foremost, breathing techniques, oncology massage, relaxation visualization, manual lymph drainage, reflexology, Reiki, and healing touch are some of the main modalities I will use in a session. Susan’s direction for “relaxing massage sessions using light gliding strokes and gentle kneading are most beneficial” is accurate but in some cases even the gentle kneading can cause discomfort, so be aware of it.
While your patient is in the early stages, taking the time to teach deep breathing and relaxation techniques can provide support to help them through much of their disease. I have yet to have a patient who didn’t thank me many times over for this tool.
Gentle music combined with your treatment will also help to bring about a sense of calm and help with relaxation . As their communication skills decrease, just the music can help bring relief and provide them peace without feeling like they need to communicate with you in some verbal or alternate signal way.
Often times with these types of disease the patient will quickly progress to points where a massage table or massage chair can no longer be used. Being able to disrobe to any extent will also become too much of a chore. So you will learn how to position yourself to accommodate their circumstance while maintaining good structural integrity for your wellbeing. Yoga sessions can help you with this if you choose to provide care to this extent. It is reassuring to patients to let them know you will be able to provide massage support to them regardless of any limitations in movement they might experience. Many things they are used to, stop being part of their normal function and you will be a constant. This is huge for their self-esteem.
As a side note suggest to your friend to join some of the ALS on-line groups. They will help answer questions and provide support. Most ALS patients can use a computer for much of their illness and it becomes their lifeline since their minds are still sharp. My friend can use the computer faster and better with her one toe than I can with both my hands.
Feel free to contact me directly if you like. I hope this gives you some insight.
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Hi Anita,
Thank you so much for your advice. I actually have been unable to massage him yet as I think it is a little uncomfortable for him being so vulnerable and he is in so much pain he just doesn't want to do anything - everything is "maybe later." - but will continue to try and will definitely work with the deep breathing. Again thank you - I love all this information.
Anita Bakke said:Hi Kerry,
My best friend of 30+ years started her ALS journey 4 years ago. It came on her quickly also and within 6 months of diagnosis she was unable to use her hands and was having trouble with her speech. This disease usually moves from the feet up but in her case is has gone from her head down so communication with her hands was not possible very early.
I treat medically frail patients in various forms and stages of cancer, ALS, Parkinson’s, MS, and elder issues like arthritis, osteoporosis, etc. I have found several modalities to be useful to assist these patients. Foremost, breathing techniques, oncology massage, relaxation visualization, manual lymph drainage, reflexology, Reiki, and healing touch are some of the main modalities I will use in a session. Susan’s direction for “relaxing massage sessions using light gliding strokes and gentle kneading are most beneficial” is accurate but in some cases even the gentle kneading can cause discomfort, so be aware of it.
While your patient is in the early stages, taking the time to teach deep breathing and relaxation techniques can provide support to help them through much of their disease. I have yet to have a patient who didn’t thank me many times over for this tool.
Gentle music combined with your treatment will also help to bring about a sense of calm and help with relaxation . As their communication skills decrease, just the music can help bring relief and provide them peace without feeling like they need to communicate with you in some verbal or alternate signal way.
Often times with these types of disease the patient will quickly progress to points where a massage table or massage chair can no longer be used. Being able to disrobe to any extent will also become too much of a chore. So you will learn how to position yourself to accommodate their circumstance while maintaining good structural integrity for your wellbeing. Yoga sessions can help you with this if you choose to provide care to this extent. It is reassuring to patients to let them know you will be able to provide massage support to them regardless of any limitations in movement they might experience. Many things they are used to, stop being part of their normal function and you will be a constant. This is huge for their self-esteem.
As a side note suggest to your friend to join some of the ALS on-line groups. They will help answer questions and provide support. Most ALS patients can use a computer for much of their illness and it becomes their lifeline since their minds are still sharp. My friend can use the computer faster and better with her one toe than I can with both my hands.
Feel free to contact me directly if you like. I hope this gives you some insight.
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