Discovering the Benefits of Massage

Kristin Neva avatar

by Kristin Neva |

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My husband, Todd, and I realized that massage could be beneficial for him even before he was diagnosed with ALS. Before we knew why his left arm was weak, I would massage his bicep and forearm, which helped him to better use it. Sometime after the diagnosis, his legs began to weaken, so I worked those muscles, too. If I missed a night, he would walk more stiffly the next day.

Massage extended Todd’s independence, but eventually, ALS claimed the use of both his arms and legs.

Todd was having trouble sleeping because he couldn’t turn himself while in bed. He couldn’t get comfortable, especially after lying in one place for too long. Todd also had trouble operating his wheelchair because his right arm was spastic, making it difficult to straighten the arm to manipulate the joystick.

His doctor prescribed physical therapy, and the therapist performed joint mobilization, muscle distraction techniques, and intensive stretching. Ongoing weekly therapy decreased his pain, helped him sleep, and allowed him to safely operate his wheelchair.

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ALS eventually took the use of Todd’s arms entirely, so he had to get a head array to operate his wheelchair. But even that was difficult for him to use because the muscles in his neck pull his head to the left. After the physical therapist added neck stretches to help Todd’s headaches, Todd found that the therapy had the added benefit of allowing him better control of his wheelchair. The stretching also helps him use his computer, because he moves the cursor with a HeadMouse.

At times, we’ve also hired a massage therapist to come weekly to give Todd a deep tissue massage. My mom does range-of-motion exercises and massage on his arms most nights before Todd goes to sleep. And his nighttime caregivers use a massage gun to loosen the spastic muscles in his calves and thighs.

Throughout the downward course of this disease, Todd has found that physical therapy and massage extend his ability to use his weakened muscles.

We made another discovery about the benefits of massage last week. In recent weeks, Todd has had increasing difficulty filling his lungs. He feels like he can’t take a deep breath, like somebody is sitting on his chest. One night, he asked his caregiver to run the massage gun on his chest and ribs. He was pleasantly surprised to find immediate relief, and he was able to expand his chest to fill his lungs. The next day, it seemed like his voice was stronger and he wasn’t losing his voice mid-sentence.

It makes sense that massage would help Todd’s breathing, as he’s noticed this with other muscles all along. But the discovery still came as a pleasant surprise, because there is so little good news with ALS.

We know the decline will continue — he now uses a noninvasive ventilator at times — but we’re hopeful he’ll be able to extend his breathing abilities with ongoing massage.

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Comments

Claude Rainville avatar

Claude Rainville

Thank you Kristin for your writings/comments , it really helps me focus on the important things to help my wife who has ALS. She was diagnosticated 18 months ago.
Claude (proche aidant full time.)

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Kristin Neva avatar

Kristin Neva

Thanks for commenting, Claude!

Debra Cox avatar

Debra Cox

Kristin, I enjoyed your article and was so pleased that your husband found comfort in those options. When my husband was diagnoised we too looked at alternatives that allowed more comfort and hope in slowing the process. Getting up and walking with assistance, using a walker and just standing, always made my husband feel better. The PT and OT's were vigiant in keeping him active with body motions and challenges. Keep it up. You are very blessed that his progression has been a slow one. Never give up and look forward for new break-throughs that make a change.
Debra

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Kristin Neva avatar

Kristin Neva

Thanks Debra!

Deborah Baker avatar

Deborah Baker

Kristen,
I too am so grateful that you have found relief with a massage therapist and PT for Todd! As you described his physical pain and uncomfortableness, I certainly can relate! How wonderful that you found a PT that understands ALS. I just completed a round of PT at home & kept asking for stretching, etc… & they kept having me do tiring exercises. I have thought about trying to find someone that would do an at home massage… and I’m grateful to hear about the massager helping Todd’s muscle spasms & breathing!
You are such a wonderful wife & caregiver & are so good about sharing your experiences! Thank you! This is a great help & encouraging to me!

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Kristin Neva avatar

Kristin Neva

I'm glad it is helpful. I hope you can educate your PT or find one who understands the disease. So frustrating. I'll share a few thoughts to pass on to PT. Ask for joint mobilization, muscle distraction, and deep stretching. Perhaps an analogy of Todd's would help them understand. When he had some strength he described his muscles like a cell phone battery. He had to recharge his muscles every night and each activity he did during the day would deplete his "battery." The tiring exercises are depleting your battery. His arm muscles were pretty bound up so he could not straighten his arm. The PT used to measure how straight he could get it. With therapy, he got so he could straighten it (with assistance) and was much more comfortable. The goal is to keep the muscles from getting bound up so you can use what muscles are left most effectively. And when the PT is providing skilled techniques like the joint mobilization and muscle distraction to help with pain and sleep, Medicare (in the U.S.) will pay for the therapist to keep coming to keep pain levels down.

Nina Walfoort avatar

Nina Walfoort

Hi Kristin, I am a big fan of you! I always read your columns. They are very truthful and yet encouraging. I am getting where my mobility is more restricted and I Really like your idea of using a massage gun. Can you recommend what brand/type you have?

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Kristin Neva avatar

Kristin Neva

We have a Homech brand one. I ordered it on Amazon but I don't see it there anymore. I found it here: https://www.walmart.com/ip/Homech-Muscle-Massage-Gun-Percussion-Massage-Gun-Deep-Tissue-Massager-for-Athletes/280423683

Maggie Broeren avatar

Maggie Broeren

Thanks, Kristin for another post of hopeful strategies. My caregivers are providing daily stretches on my arms and legs but the massage gun (US $50-$100) seems like a worthwhile investment for daily use. I’m grateful for your frequent, practical tips for creating as much comfort as possible.
I hope this note finds you enjoying some fun winter activities with your children while Todd relaxes.
Prayers continue for all of us w ALS. Dear Lord, make each day as joyous and comfortable as possible!

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Kristin Neva avatar

Kristin Neva

Thanks Maggie!

JODY BASHAW avatar

JODY BASHAW

Thanks for the information you provide. I have ALS also. I was diagnosed with ALS in 2010 as well at the age of 38. I had been diagnosed three weeks after my daughter was born. Massage therapy does help, for sure. What I found that helps me more is cold laser therapy. It works with your body's frequency and it balances your brain as well as other areas in your body. I have no guarantee, but it has kept me going strong! Good luck to you and your husband.

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Kristin Neva avatar

Kristin Neva

Thanks for sharing, Jody! I'll have to look that up.

Jennifer O'Brien avatar

Jennifer O'Brien

Kristen,

Thank you, so much, for taking the time to share this information. I'd just been wondering if massage would help my increasingly stiff body. Very grateful to you. Am going to pursue and keep in mind the other tactics you describe for the future..

I'm glad that Todd has found relief through massage and the other tactics and wish him the the best going forward. It sounds like you, your mom and others are providing very loving care.

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Kristin Neva avatar

Kristin Neva

Thanks Jennifer! I'd suggest looking into PT too. See my comment in to Deborah in this thread.

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