Ep 322 – Client with Cerebral Palsy: “I Have a Client Who . . .” Pathology Conversations with Ruth Werner

0:00:01.4 Ruth Werner: Hello, I Have a Client Who listeners, Ruth Werner here, and I'm so excited to let you know that my library of online self-paced continuing education courses has just expanded. I now have a two-hour ethics course called A Doctor's Note is Not Good Enough and What is Better? This NCBTMB approved course goes into why a doctor's permission or approval or even a prescription doesn't provide the legal or safety protection you might think it does, then we look at how to start useful conversations with healthcare providers that will actually get us to safe and effective massage for our clients with complex conditions. Visit my website at ruthwerner.com for more information and to register for A Doctor's Note is Not Good Enough and What is Better?  

0:00:52.1 Speaker 2: Introducing Back Jam, held online, the first four Mondays in May 2023 and hosted by The Massage Mentor Institute. This is the fourth event in a series of workshops focused on a single region of the body. We've gathered the following industry leaders, Til Luchau, James Waslaski, Tom Myers, Diane Lee, Paul Kelly, Sue Hitzmann, Whitney Lowe, Aubrey and Allison Gowing, Allison Denney, Judith Aston, Benny Vaughn, Heath and Nichole Reed, and Ruth Werner. Sign up for the Back Jam, sponsored by abmp@themassagementorinstitute.com. 

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0:01:43.3 RW: Hi, and welcome to I Have a Client Who, Pathology Conversations with Ruth Werner, the podcast where I will discuss your real life stories about clients with conditions that are perplexing or confusing. I'm Ruth Werner, author of A Massage Therapist's Guide to Pathology, and I have spent decades studying, writing about and teaching about where massage therapy intersects with diseases and conditions that might limit our client's health. We almost always have something good to offer even with our most challenged clients, but we need to figure out a way to do that safely, effectively and within our scope of practice, and sometimes as we have all learned, that is harder than it looks. 

0:02:30.4 RW: Today's story comes from a massage therapist with a client whose situation is something I would love for more massage therapists to become familiar with because it's getting increasingly common, which is sort of good news and that will make more sense in a minute, and also because this is a dramatically underserved population who deserves better care than they get. I'm talking about adults with cerebral palsy, and our story goes like this. I have a new client with spastic cerebral palsy affecting both sides of the body, but more so on the right. They have an implant to pump anti-spasmodic drugs to their back. They will be receiving Botox injections in March. I've read conflicting information on how and when it's okay to massage. Some studies claim stretching shortly post-poke is good, and others say, let it set and wait five to seven days post-poke. Any advice? So this contributor's questions are mainly about fitting massage in with Botox injections, and that's a great topic which I will talk about in a bit, mainly to describe the many points of view that exist about where massage fits in that context and how little we actually know about possible risks and benefits, argh, argh, argh. But I also wanna talk about cerebral palsy or CP, which is a condition that gets a fair amount of loving attention in children, and as we've gotten better at improving life expectancy, more people are surviving into adulthood, which is great. Right?  

0:04:00.3 RW: Sure. But now we have a whole population of people with cerebral palsy who age out of the care they can access as children and adults with this problem can run into figurative brick walls and literal ADA non-compliant doors as they try to get the care that they need. I was especially taken with the screening questions that this massage therapist who has some experience working with adults with CP shared, they are succinct, detailed, and they provide great information to guide clinical decisions, so of course, I will be talking about them here, if because of this episode of, I have a client who even just one more person can find a massage therapist who says, Yes, I'll try to help you with your CP challenges, I will consider this a huge win. So let's start with some background on cerebral palsy. CP is not just one thing, it's a whole group of nervous system disorders that develop during pregnancy or that are acquired during or shortly after birth, and these disorders which can affect various parts of the brain cause motor and other kinds of problems. 

0:05:12.3 RW: Here's the official definition, a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior by epilepsy, and by secondary musculoskeletal problems. CP is often described by what kinds of motor dysfunction are present, the most common subtype is spastic CP, where certain flexors contract so fiercely that their antagonists have to let go, and this is called the clasp-knife effect. This can happen on one side of the body, that's hemiplegic spastic CP, or in the legs more than the arms, that's diplegic, or quadriplegic or tetraplegic spastic CP, involves all of the extremities, but in these situations, the neck muscles may be hypotonic. Adults with CP tend to age faster than others, it takes so much more energy and effort to move for someone with CP than for someone who doesn't have this problem. Simple activities are more draining. Most adult patients are prone to fatigue, exhaustion and overuse syndromes. 

0:06:40.0 RW: In addition, there's a whole slew of complications that come along for the ride, including gastric reflux, seizures, osteoarthritis, hip dislocation, scoliosis, and so much more. And an issue that often gets left out of discussions of cerebral palsy is pain, pain from the muscular stresses and strains, pain from physical therapy treatments that can be aggressive, pain from corrective surgeries. So cerebral palsy in adults is a serious situation, and once people pass the age of 18, they may no longer have access to medical care that was available to them as children. I wrote an article on this for Massage and Bodywork in 2012, yikes, 13 years ago, and of course, I will put a link in our show notes. If I say so myself, it's a good one. The person in our story today is an adult man with cerebral palsy, he's limited in where he can go, because even buildings that present as ADA compliant are often not, and he had the good luck to find a massage therapist who has experience working with other adults with CP and who knew exactly how to get the information they needed to offer the best benefits that massage can provide and here are the questions they asked. 

0:07:54.7 RW: They asked, what kind of CP do you have? Do you have any history of seizure associated with your CP? Do you have areas of lower sensitivity or numbness? Do you have vision or hearing impairments? Do you have communication difficulties? Do you use a mobility device? Can you turn over from back to stomach with or without assistance? Will you need help dressing or undressing? Do you have a personal assistant? Do you have other external or internal medical devices that we need to be aware of? Have you had any recent injections? Are there comfort items we can provide for ideal body positioning? Can you tolerate heat? And lastly, what kind of music helps you to relax? From this, they learned that this client has spastic CP that is more extreme on his right side, he uses a power wheelchair, he has some communications limitations, he can turn over, but he might need help, he can dress himself, he has a baclofen pump for muscle spasms. He is scheduled for Botox injections starting next month, he thinks pillows and bolsters might be helpful, he loves heat, he hates cold and he likes any kind of music. 

0:09:07.5 RW: Well, this is all wonderful information, I can see a great session unfolding here. The only questions I would add to this is whether he's taking any other meds and whether he can transfer to the table himself or if he'll need some help, and of course, getting a sense of his goals for massage will help the massage therapist to structure their strategies. This clinician clearly knows what they're doing, but I do wanna take a moment to point out the issue of the baclofen pump, and if you have a client who uses one and you have questions about it, please do let me know, I'd love to do another episode specifically on this intervention. Baclofen is a muscle relaxant and it acts on the spinal cord. This pump typically involves a small reservoir in the abdomen and a little catheter that runs around to deposit the medication directly into the spinal canal. This pump may require some accommodations in positioning and we also need to know how the Baclofen affects this client and his muscle tone, so we don't try to push him beyond his true range of motion. 

0:10:10.6 RW: At this point, our contributor's biggest question for me is about Botox injections. I looked back through some of our previous I Have a Client Who episodes, and evidently I haven't addressed Botox here, so I will go ahead and touch on it now, but if you have a client who uses Botox cosmetically or for other reasons, I'd love to do an episode on that too. Botox or botulinum toxin, is extracted from a bacterium called clostridium botulinum, and we associate this bacterium with a certain kind of potentially fatal food poisoning. This substance effectively destroys the acetylcholine producing motor end plates of motor neurons and this is how it prevents contractions, causing flaccid paralysis of the targeted muscle cells. This is not a great thing when we accidentally ingest a bunch of bacteria and they make us paralyzed, but starting in 1980, we began to use Botox therapeutically to help with muscle imbalances. It started with injections for strabismus and went from there to various types of dystonia, and of course, to paralyze some of the facial muscles that cause wrinkles, but we also use Botox for migraines and for some neuromuscular issues that can cause painful spasms and spasticity like cerebral palsy. The motor end plates that are affected by Botox, they're done. They will never secrete acetylcholine again. 

0:11:39.6 RW: But here's the good news, they grow back. It takes several weeks or up to three months, which is why people who get therapeutic Botox injections typically do it about four times a year. But where does massage fit? Well, it depends on where the injection is, and it also depends on whose opinion you wanna follow. Botox injected into superficial tissues like facial muscles, that's easy, no touching, no pressure on those areas for several days, that's the most common advice that I see, and it makes sense because we want for that muscular change to happen accurately where it's been pinpointed and targeted. If we add pressure and massage to this, we might move this material out of the targeted areas and into areas that were not intended to be affected by Botox. But Botox injected into deeper muscles, that's trickier, and there's no research or consistent guidance on this. Some people say, get in there and spread it around, so it affects more of the targeted muscle. Others say, Whoa, there, let's be more specific and leave it alone for several days. So I am of two minds about this. 

0:12:52.1 RW: Well, actually, I'm of three minds about this. My first most conservative response is to say, Let's just avoid the site of Botox injections for at least a week, but massage in other areas is fine. My second, more curious response is to say, Would it be possible for you to get a conversation with this person's physician and ask about their opinion, because maybe they'd be delighted for this client to receive some focused massage to the muscle that has been targeted for reduced tone. And my third, always consistent mind says, write a case report, write a case report. Write a case report. About 300,000 adults with cerebral palsy live in this country, and because until recently, most kids with CP didn't live to adulthood, we don't really know how to take care of these people whose needs change over time. Massage therapy obviously won't change the status of a person with CP, but our work could help them to cope with many of the challenges that come with this condition, but until we start gathering some data about massage for adults with CP, we won't know how best to apply our skills. I wanna encourage every listener to consider A, working with clients who have CP, if that's of interest to you, and B, sharing your discoveries with us so more massage therapists can feel a little more confident to offer our skills to this very eager population. 

0:14:21.7 RW: Hey everybody, thanks for listening to, I Have a Client Who, Pathology Conversations with Ruth Werner. Remember, you can send me your I Have a Client Who stories to ihaveaclientwho@abmp.com. That's, I have a client who, all one word, all lowercase at abmp.com. I can't wait to see what you send me and I'll see you next time.