*On June 26, 2024, Stacy spoke with the Nebraska/Utah Dystonia Support Group for a question and answer session about Dystonia Massage. Below you can read all the questions and answers from that evening's conversation.
Dystonia Massage Q&A with Stacy Williams
for the Nebraska/Utah Dystonia Support Group
Q: How many dystonia patients do you treat daily?
A: I typically see 1-2 dystonia clients each day I’m in.
Q: What does your background look like? How long have you been practicing massage therapy for, and did you do extra training to work with neurological disorders?
A: I’ve been a massage therapist for over 15 years. When I was in school one of my classmates had cervical dystonia. She and I worked on each other pretty much daily for almost a year, so I got lots of hands-on practice before I even finished school. Once we graduated from our massage program, she and I started sharing a space together and still do to this day. We obtained the Torticollis Massage Guidebook & DVD by Reese Myra Murphy and Theresa Fallon and learned her sequence. It was especially beneficial to me, as I had access with someone with the disorder as I was practicing. Beyond that, much of my continuing education is focused around neck, back, and shoulder work. I’ve also done training in craniosacral therapy, massage for migraines, myofascial release, and an entire year long course in polarity therapy.
Q: Do you incorporate the Bowen technique, and if so, how do you choose between which techniques to perform- myofascial release vs. Bowen?
A: I currently do not have training in the Bowen technique, though it’s on my radar for the future.
Q: Can you explain more about polarity therapy?
A: Polarity therapy is a form of energetic bodywork developed in 1947 by Dr. Randolph Stone. Dr. Stone was a chiropractor, an osteopath, a naturopath, and an ayurvedic practitioner. He also had training in homeopathy and oriental medicine. He took what he deemed the best of each modality and blended it together and created polarity, with the intent of bringing balance to all systems of the body. Polarity therapy incorporates rocking, pulling, vibration, static holds, and stretching, as well light to moderate pressure on specific points along the body to obtain balance and alignment to the physical and energetic bodies. Many of the points used in polarity run along the same meridians used in acupuncture. Some polarity practitioners also incorporate pieces of craniosacral healing, sound therapy, crystal work, and full clearings of the body’s energetic systems to complement the physical work, helping to bring everything on a physical and etheric level into balance.
Q: Do you see one form of dystonia more than others?
A: The majority of my clients suffer from torticollis, though I do occasionally see clients with laterocollis. In 15 years of doing this, I have yet to have anyone cross my table with anterocollis or retrocollis.
Q: Do you have a typical routine for how to control spasms and pain in dystonia?
A: On the table, I don’t have one specific routine — I base it off where each client is when they come in. Some respond better when I start them on their back and some do better face down. That being said, I almost always start with some sort of light traction and palpation of the neck and shoulders.
If supine/face up, I will gently turn the head side to side, and to some extent, up and down, to see what the range of motion is. I am also looking to see where I’m feeling any resistance and potential spasms. If the neck is actively spastic while on the table, I will start with some gentle stretches bilaterally, occipital holds, and static pressure along the scalenes. Once the area is warmed up so to speak, I’ll start working on the side and back of the neck, as well as the top of the shoulders/upper trapezius using various massage techniques including stripping the muscles, cross fiber friction, and myofascial release. I work each side slowly, going layer by layer, with as much pressure as my client can comfortably tolerate. When I’m on the affected side, there’s sometimes a lot of repositioning of the neck and I may need to throw in additional traction and stretching. On many clients, I’ll also work the skull on the temporal bones, especially just above the mastoid bone and around the ears. On clients who are actively spastic, there is a lot of just holding the head in a neutral position after I’ve worked the muscles to help retrain them where neutral is. I also do a lot of pectoral work on the chest and if they’re really locked up, I’ll do some rib work on the intercostal muscles.
Once I have the client positioned face down, be it at the start of the session or the 2nd half of the session, the face cradle is always positioned down at a 45 degree angle. This position helps open the neck and lengthen the muscles. From this position I am really able to work the suboccipital muscles and get in right along the cervical vertebrae. I’m also able to really work the levator scapula, the rhomboids, the rest of the trapezius, and all the other muscles that attach to the scapula—17 in total. While I do a full back massage, as all those muscles are impacted in one way or another, frequently compensating, the focus really is working those neck muscles.
Once the client is off the table, I always recommend icing the area over the next 24 hours as I do work on a fairly deep level and there is some residual inflammation. Depending on where a client is at, we rebook anywhere from 4 to 10 days out, though some of my regulars who I've been seeing for years can go 2-3 weeks between sessions. Several of my clients are in various stages of the long distance course offered by the Spasmodic Torticollis Recovery Clinic, and a few have traveled down to New Mexico for their in house program, so I encourage them to keep up with their exercises through the program. For those who have not been through any dystonia specific program, I will often recommend slowly rotating the head to each side a few times, pausing and holding for 5-10 seconds when in neutral, as well as the end point on each side. Next, position both hands behind the head with thumbs hooked under the occipital bone and do the rotations again. Having the hands behind the head helps to prevent the shoulders from assisting in the rotation as they’re already engaged in this position. Clients can also use a small hand weight or even a water bottle in each hand and extend their arms straight up towards the sky and then do the head rotations. This will help not just the neck, but help the spinal column as a whole. Another stretch that seems to help clients is putting the right hand on the right shoulder and then hooking the left hand on the right side of the occiput. Once the hands are positioned, gently pull to the left and hold for 10-15 seconds. Relax, and repeat on the opposite side. Left hand on left shoulder, right hand on the left side of the occiput, and pull to the right, holding for 10-15 seconds. I also recommend holding hand weights or bottles of water and really focusing on dropping the shoulders down as much as possible. Do a couple of shoulder shrugs, and then really drop the shoulders again, holding for 20-30 seconds to start. Side bending/bringing the ear to the shoulder is another beneficial stretch. Again, hand weights can be beneficial as it makes it less likely the shoulder will assist. The last stretch that seems to help is the doorway stretch to open up the chest/stretch the pecs. Position hands on either side of a doorway and lean through the doorway, with arms remaining on either side of the wall. This should be felt across the chest. Arms can be adjusted higher for less stretch or lower for a more isolated stretch.
Beyond exercises, home massage is just as important as coming in for a professional massage. This can be done by yourself or by a family member. There are tons of neck traction devices out there. Some are hard core, but I often recommend the ones that provide a gentle traction. If you already have one that you’re comfortable with, use it for about 5-10 minutes to start. Even 2 tennis balls tied up in a sock will do the trick. Place the device or balls under your occiput/base of your skull and let your head relax into it. Circular friction is the next step. Take 2 or 3 fingers and starting behind your ear, working along the base of your skull towards your spine, do small circles. You can do one side at a time, or both sides simultaneously -- whichever feels best. You can also work the muscles just above the ear and work your way back. You can do circles or even a light pinching motion (I often recommend clients get a little extra of this when they’re in the shower washing their hair. This is a super simple way to incorporate a little bit of self massage on a daily basis). Once you’ve done this, you can take 2 fingertips behind your ears and do small circles down the side of your neck. Just make sure you’re behind the carotid artery and jugular vein. You can then do circles across the tops of your shoulders and then light circles across the top of your chest, right into your armpit. If you have a theracane or something similar, you can do some static pressure on your rhomboids and anywhere else on the back as well.
Q: Can you explain the potential benefits dystonia patients may see from massage?
A: There are many benefits of massage for dystonia patients. These include being in a more relaxed state, releasing tension in not just the affected muscles, but also the supporting muscles in the area, and reduced pain. Massage therapy can also increase flexibility as well as your range of motion, and bring elasticity back to overworked muscles, including the scalenes, suboccipital/capitis muscles, the levator scapula, trapezius, rhomboids, and all the rotator cuff muscles on the back, as well as the pecs on the front. Regular massage can also help reduce the frequency of spasms/dyskinesia, and can increase the amount of time you are able to keep your head in a neutral position without assistance. Massage can also improve sleep, reduce stress, and overall, improve a patient’s quality of life.
Q: Are you familiar with the latest research out there for dystonia patients?
A: I do try to keep up with the latest research out there. I periodically check the Dystonia Medical Research Foundation’s website, as well as the National Institute of Health, but hear the most from my clients who are living with this.
Q: What feedback have you received from patient’s post-treatment?
A: I have received some great feedback and some amazing results from my clients who receive regular massage for their dystonia. Typically between session 2–4 is when they really seem to notice results. One of my regulars used to struggle sleeping on their side. After their 2nd or 3rd massage, they came in so excited. For the first time in who knows how many years, they were finally able to sleep with their head flat on the pillow. I’ve been working on this person for countless years at this point and if I didn’t know she had dystonia, it would be tough to tell. They are constantly telling me how much better they feel and how their quality of life has drastically improved since they started incorporating massage into their self-care routine. A newer client has been in for 7 or 8 appointments now and is really starting to feel like I’m targeting the right muscles to get relief. They find it easier to maintain neutral for a longer period of time now that they’re receiving massage instead of just the botox injections. This individual notes they still have bad days, but there are just as many, if not more good days. Another client of mine has reported they have a much easier time walking in a straight line and traveling long distances. Before they incorporated massage therapy, it was brutal at best, if not sometimes impossible. Now it’s something they are able to do on a regular basis with minimal difficulty.
Q: Do you collaborate with other healthcare professionals during a treatment session?
A: I do have some other massage therapists, a couple of chiropractors and a neurologist that I occasionally collaborate with, but due to HIPAA and patient confidentiality, most clients will be the go-between with any questions or recommendations I may have or that their other providers have. It’s not unusual for me to text muscle diagrams to clients so they can show their providers exactly where I’m working, and I will obviously provide copies of SOAP notes if requested.
Q: What would a home program look like for someone with cervical dystonia?
A: I kind of already answered that before, but just to recap, a home program would consist of both exercises and self massage (or massage by a friend or family member). Exercises would include a few variations of neck rotations, occipital pulls, shoulder shrugs and drops, and the doorway pec stretch. Massage would include gentle neck traction to start, followed by circles at the base of the skull from just behind the ear all the way to the back of the skull/spine, done on both sides. Then light massage from the top of the ear to the back of the head, followed by circles along the neck, upper shoulders, and chest. Doing the self massage and stretches at least once, if not twice daily would be most beneficial, but anything is better than nothing, so really as often as your life/schedule allows. On the day you receive your professional massage and possibly the day after, ice the area to minimize any sort of residual inflammation.