Darlene Harrier talks about physical therapy for those with neurodegenerative disorders like MS and Parkinson’s: intermittent, life-long care.
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Music by permission from Joey van Leeuwen, Boston Drummer, Composer
Thanks to these fine people who inspired me for this episode: Jacob Sloane, Rip Kinkle, Keith Puri, Jeff Harrington, Gabrielle Pitman, Dan Fox
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Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this.
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Introducing Darlene Harrier
I’m fortunate. Today my health and well-being attention goes to function and spirit. My constellation of symptoms are seriously annoying but manageable. I can afford to focus on strength, balance, mobility, and rest. Put another way, my medical concerns are relatively stable. On with quality of life! A couple of weeks ago, I published my conversation with Keith Puri, my chiropractor. Here I chat with Darlene Harrier, my physical therapist. Darlene works in the outpatient department of Beth Isreal Deaconess Medical Center in Boston. I began working with her shortly after I was diagnosed. She was the first referral from my neurologist. I have more talks scheduled with other members of my team. They support me well. I’m grateful.
Health Hats: Darlene, I’m delighted to be talking to you. I think the world of you. You have helped me and continue to help me so much. I think about you every other day while I am doing my routine. This morning, while I was doing my routine, I was thinking, “this is from Darlene.” Yeah. How do you introduce yourself in a social situation?
Darlene Harrier: I’m very informal. I usually introduce myself with my first name to make it more personal and make that more intimate connection. I don’t identify in a social situation as a physical therapist unless I feel that the person is interested in knowing that.
Health Hats: How about in a professional situation?
Darlene Harrier: Back to the social situation, if someone is interested in knowing what I do for work, then I will explain that I work as a physical therapist, treating those with neurological conditions. Particularly, as an outpatient physical therapist; as a clinical specialist in neurologic physical therapy.
Specializing in neurologic physical therapy
Health Hats: How did that end up being your specialty? How did you get there? Did you know right away?
Darlene Harrier: Actually, it was a gradual process. I worked in an acute rehab center early on in my career. I was a physical therapist assistant before I went back to school. I had the good fortune of working with amazing physical therapists in an acute rehab center in Michigan.
Health Hats: Which one?
Darlene Harrier: Mary Free Bed Rehabilitation Hospital.
Health Hats: My first job, while I was in nursing school, was at the Detroit Rehabilitation Institute. Anyway, you were at an acute rehab facility.
Darlene Harrier: Of course, in an acute rehab facility, back in the early eighties, patients stayed months and even longer following a spinal cord injury. It was pre-physical therapy training for me. I was able to work with these very complicated cases as an assistant and learn how the progression of illness and rehabilitation can be. I moved on from that. I went to physical therapy school in Boston and I worked in an acute hospital setting for those years while I was going to PT school. I found that there were no therapists in the hospital who felt confident treating patients with neurological conditions. Even though I was a new grad, by the time I finished PT school, I was the one who eagerly took the neurological patient.
Health Hats: You were filling a vacuum.
Darlene Harrier: Exactly. So, starting on inpatients, I quickly became the leader on the neurological floor. I was also in the neonatal intensive care unit. I was the only physical therapist who had any experience working in pediatrics. I’m talking about one year out of school
Health Hats: You were priceless. It’s all relative, isn’t it – expertise? You knew a little bit more than everybody else around you. So, you were the expert.
Darlene Harrier: It’s more hands-on training and not the research.
Discovering the fragility of health
Health Hats: Where were you when you first realized health was fragile?
Darlene Harrier: Believe it or not, I was very young when I realized that health was fragile. Probably as young as soon as I was able to make memories because I was born with a congenital orthopedic defect. I was born with the lower half of my right leg missing. My fibula was missing. My right leg was shorter than the left, and also my ankle was unstable. If you’re missing the fibula, you don’t have a full ankle.
Health Hats: The fibula is the thin bone that pairs up with the femur?
Darlene Harrier: The tibia down below. The femur is above.
Health Hats: Okay. Thank you. I was orienting that my listeners, but clearly, I needed orienting as well.
Darlene Harrier: Normally, the traditional treatment for that was amputation below the knee. My parents had to decide within months after I was born, whether they were going to have my leg amputated or embark on this new treatment approach that began in the fifties. I was born in the early sixties. It was a new approach entailed leg lengthening procedures, stunting the growth of the other leg and ankle fusion, wearing braces. So that was my childhood – having surgeries performed to correct for this congenital deformity. By the age of 15, the surgeries were done. And I was able to graduate out of a brace. I had like a full-length leg brace up until then. By that time, I was walking with a limp. I still had a two-inch leg length discrepancy, which was less than it would have been without surgery. But I realized at that time that if I wanted to walk better, it was up to me to figure it out. I don’t know what came over me that I just said, no, I’m not going to put up with this. Something was not right. I knew better. And mind you, I never had physical therapy. I knew about physical therapists. The surgeon told my parents what they had to do.
Health Hats: So, all those years, you didn’t go to a physical therapist. How interesting.
Darlene Harrier: It was at that time that I realized it was up to me. I wouldn’t even think about being a physical therapist until I graduated high school. I went into physical therapy assistant school because I didn’t have the confidence that I could be a physical therapist. I wanted to be a music therapist and realized that I didn’t have the extroversion for that and quickly came up with plan B. I always wanted to work in a hospital. I loved being in the hospital after all those surgeries. I thought it was exciting and wanted to see what was going on.
Health Hats: You came into this, honestly, didn’t you? In hindsight, it makes so much sense.
I need an expert when I need an expert
One of the things that I make it a point to tell people when I talk about my physical therapist, who is you, is that although I started seeing you ten or more years ago, I don’t know that I’ve seen you more than ten times. We started with a brief flurry as you did your assessment and you started me on a program and then I’ve come to you either for a tune-up or I’ve progressed, and I’ve fallen. I remember the time I fell, and I couldn’t get up. I was all freaked out. I came and you taught me how to get up off the ground. Then, one cane wasn’t doing it. I was thinking about using a walker. You put me on two canes and how to do that. I need an expert when I need an expert and then I’ll do the work. I don’t need to keep seeing you every day, or every week or every month. I’m wondering when treating progressive and neurological conditions what the patterns of care or treatment that you find yourself and do you have people like me that you see for ten years over time.
Darlene Harrier: Yes. That’s the practice model in treating those with neurodegenerative disorders because it’s a chronic condition that never goes away. The goal is to keep you as functional, strong, and independent for the rest of your life in any way possible. While the condition never goes away, unfortunately, there are ways to help slow down the rate of progression, and even make small improvements intermittently. If you backslide, it can bring you back to where you were recently.
Health Hats: That’s what I was referring to as a tune-up.
Darlene Harrier: In conditions such as those with multiple sclerosis or Parkinson’s, there are people I’ve been seeing for 20 years and see intermittently. I’ve got people I see every three to six months like clockwork and others, I might not see for a couple of years. They always come back and that’s how it should be.
Health Hats: I confess that a few years ago, I tried another physical therapist. I thought, ”what would it be like going to a different physical therapist? Would they have something different to offer that might be helpful?” It was not a successful experiment. I immediately canceled any subsequent appointment and made an appointment with you that was, as expected, wonderful. Every once in a while, I like to experiment, but the person had no idea what he was doing with somebody with a neurological and chronic problem. It was completely acute care focused, temporary, see somebody for ten visits and then they’re done. He could not get into what I needed. You help me develop life habits, to maintain your balance, your strength, your mobility. These are things to think about in terms of safety. And if this happens, I want to see you again. He didn’t have any of that.
Darlene Harrier: With these types of conditions, we’re looking at how to measure function. For example, the way to know whether someone has had a decline in their function is to measure things like walking speed, balance, or do an objective functional mobility questionnaire that I can look at over time, each time you come in. I retest your walking speed and your balance. Then we can look at how did you function two years ago? How are you functioning now compared to that? What is it that is causing that change and how can we make that better? Are there exercises that we didn’t previously implement that could be done or changing a current exercise program or adding assistive devices? Those are ways that we use to track progress and provide the interventions as needed.
Now a word about our sponsor, ABRIDGE.
Use Abridge when you see your physical therapist. Push the big pink button and record the conversation with your doctor or therapist. Read the transcript or listen to clips when you get home. Check out the app at abridge.com or download it on the Apple App Store or Google Play Store. Record your health care conversations. Let me know how it went!”
Developing daily habits
Health Hats: I’m an activated, self-motivated person. I don’t need encouragement to do the routine that we set up every other day. I was thinking this morning when I got done with my routine, I had the pleasure that I could do it and I maintain those things that are at risk, and I’m getting stronger. You gave me a set of upper body, work to do; those areas are getting stronger. It’s its own motivation. But I imagine that part of your work is working with people to develop routines. It’s the daily work, or for me every other daily work, that’s the thing. It isn’t coming to see you every six months. It’s doing stuff every day. So how do you approach that dilemma of helping people build routines?
Darlene Harrier: That’s the thing I must consider with every single person, is to try to figure out what could potentially be their barrier to exercise. Some people have a history of exercise and have always enjoyed exercise. Some people have never exercised, and probably I’m not going to change their behavior now in this new condition they have. So, I must instill some confidence that exercise can help them improve. They can either stave off functional decline if they were to do the exercise or feel better if they were to do the exercise. Some people are working, and they don’t have time to take the time to exercise. It’s about finding strategies for each person. What can be helpful? For example, I live two miles from work. I have made it my priority. For me to get in my exercise, I have to use my commute. I’d walk to work every day and back home again. I try to think of ways for individuals who if they’re working and they say, “I don’t have time to exercise. I barely get through my day.” I can help them identify something they can do throughout the day. We know that you don’t have to dedicate an entire half an hour at once, you can break it up into five-minute walks a few times a day. It all adds up.
Health Hats: Do you think about helping people with small wins so that there’s some bite-size thing that they can do, so then they can feel like, okay, well I did that for a minute. Maybe I can do it for two minutes or whatever?
Darlene Harrier: Exactly. Starting with whatever they can succeed at doing — then helping them understand how they can progress gradually.
Health Hats: In my program, I use a combination of what you’ve taught me and I have a good chiropractor. Sometimes he fine-tunes stuff. For example, I’ve seen him as long as I’ve seen you. When I first went to you, he asked, “what’s your routine?” I demonstrated and he goes, “Oh, that’s perfect. I only have one suggestion: do it in your bare feet.” Because he wanted to get the soles of my feet to my brain connection. We added that one little thing at the beginning. I liked that he was so encouraging. He said, “Oh, you have a great physical therapist. This is perfect.” He was reinforcing. It made sense. I feel like I can do the balance stuff a lot better in bare feet after maybe a few months. My question in that story is “do you find that people who have chronic lifelong things probably have a team of people? Do you find that there are synergy and resistance from other members of the professional team that you have to deal with?”
Darlene Harrier: I have never perceived any resistance. I’m very accustomed to working in an interdisciplinary team approach with patients anyway. Particularly because in treating those with neurological conditions, it does take a team. One provider is not enough. It takes a team.
Health Hats: I have six specialists and acupuncture, chiropractic, massage, meditation. It’s a whole team.
Darlene Harrier: An average person with no disease finds benefit in seeing somebody for manual therapy intermittently throughout their life. That would be even more appreciated and beneficial by someone who’s having motor control issues or postural changes because of a lack of strength. They need extra help to get through. It can help facilitate movement.
Health Hats: Is there something, anything you’d like to ask me?
Music and dance
Darlene Harrier: How are you doing with your music?
Health Hats: My music is going very well. I’m playing in a Latin band now, and I am way over my head, and I’ve never played Latin music before, and I haven’t been that familiar. But, I got invited to play, and I turned them down the first time. And then I thought, I’ve always wanted be part of a horn section. They have an alto sax, a trombone, and a trumpet. It’s like the exercises, one foot in front of the other, good daily habits. And I’m slowly learning. I like the music. I’m good at what I do professionally, and I’ve had a career where I’ve been good at what I do. Not so much music. It’s a good humbling experience.
Darlene Harrier: And that’s going out of your usual environment. Right?
Health Hats: It’s good for me. I don’t know if I’ve ever told you this, but Dr. Kinkle said that when he found out that I was playing the baritone saxophone. He said, “I got nothing in my toolbox that’s better than you playing the saxophone. First, you’re inflating your chest fully. Because you have intercostal involvement, you have dexterity issues, and you’re playing this big horn and it’s creating new brain pathways and it’s lifting your spirits.” And he said, “I got nothing compared to that. I got nothing. You keep playing the saxophone. That’s the best thing you could do.”
Darlene Harrier: He is right. That is so true. In my work with those with Parkinson’s, one strategy to get them to exercise is joining singing groups and dancing. It’s the way to live fully with disease.
Health Hats: I so appreciate that you’ve taken the time to chat with me.
Darlene Harrier: I am honored to be on your healthcare team and happy to see you thriving.
Health Hats: Yes. I’m thriving. No doubt about it. What the heck, I might as well. Take care, and I’ll see you soon.
Darlene Harrier: I was going to say, when do I see you next?
Health Hats: I ought to make an appointment. We’ll take stock, do your assessment and continue to point me in a good direction. Thank you for reminding me.
Darlene Harrier: You’re one of the more self-driven who doesn’t need appointments every three to six months. Thank you so much.
Reflecting on my health team, I see that some have a license to access restricted drugs, procedures, and treatments such as prescription medications, surgery, devices, diagnostic tests, acupuncture. Some provide hands-on care and manipulation – physical therapy, chiropractic, massage, nursing, and caregiving. Some excel as expert coaches, providing information and understanding, roadmaps, guides, and links on the journey toward best health. Some open their hearts providing love, respect, and gratitude. I subscribe to the notion that best health includes spiritual, mental, and physical health. Strong spiritual health eases the day-to-day challenges of mental and physical health. From time-to-time I reflect further about my team. I see that while they may be on the team for a specific need or service, individually they have unique blends of license, hands-on, coach, and open heart. Darlene Harrier offers all four. Thank you, Darlene.
Several musicians participate in my health team. Some know it, some don’t. I’ve studied with saxophonist, Jeff Harrington, for more than ten years. He understands the challenges of my MS and has hekped me adapt to vision and exterity challenges. I study with him via Zoom. Dan Fox leads the Morningside Studios, the home of more than 20 ensembles. I participate in a blues funk ensemble and have played in several jazz ensembles at Morningside. #TPFAlumni, Gabrielle Pitman, interviews Dan Fox on her Musicians Can Thrive Podcast. Check it out. Links in the show notes. https://musicianscanthrive.simplecast.com/episodes/bringing-joy-and-excitement-into-teaching-music