Over the course of the next few months I’ll be writing about what I learned at the recent Consortium of Multiple Sclerosis Centers (CMSC) annual meeting, I hope what I write will be helpful for those in the MS community.
Hold on! If you’re shaking your head because you don’t have MS and think none of this applies to you, think again.
We all have more in common than you think.
Physical Therapy. Yoga. Cognitive Issues. Medical Marijuana. Fatigue. Health Maintenance. Wellness. Depression. Mental Health. Exercise. Sleep Quality. Brain Health. Diet. Alcohol. The Importance of Gut Health. End-of-Life Decisions.
Yup, I thought so. Now you see my point!
The issues I'll be writing about affects everyone. The focus may be on MS, but those without MS can find information that apply to them as well.
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In the early days of living with MS my hands and legs became increasingly weak and numb every single day. My walking was unsteady and I was unable to hold a pen properly. I'd fall on occasion and slept most of the day. I felt depressed and unsure of my future.
This was in the 1980’s, before computers were the norm, so you can imagine how frightened I was of being unable to continue my passion of writing.
And I was petrified I’d eventually be unable to walk.
That’s why I have enormous respect for rehabilitation therapists.Their job is to help patients regain their independence and self-esteem (depending on the unique track of the disease) by evaluating their needs and teaching them, through therapy and the use of assistive devices, how to regain the use of their bodies as much as possible.
I was blessed to find a physical and occupational therapist who taught me how to use my hands and feet in a way that I could continue living a full life.
My hope is that others in the MS community will have the same results.
[Tweet "My interview with Patricia Bobryk, PT re: rehab & #multiplesclerosis @mscare #CMSC2016"]
So it was my pleasure to interview the incredible Patricia Bobryk, MHS, PT, MSCS, ATP. Patty is a dedicated physical therapist at the Orlando Health Multiple Sclerosis Center in Florida. She’s the Secretary for CMSC AND a co-chair of the Organization of Multiple Sclerosis Rehabilitation Therapists (IOMSRT) whose mission is:
The mission of the IOMSRT is to increase participation, communication and representation of rehabilitation in the management of people with MS and to promote research relevant to rehabilitation and MS. The IOMSRT facilitates the development and dissemination of rehabilitation educational programs and offers valuable networking opportunities for professionals in the rehabilitation field. Serving as a vehicle for education, collaboration and networking for rehabilitation professionals, the IOMSRT improves the quality of all of those affected by MS.
As co-chair of IOMSRT she seeks to educate “new and emerging” students.
We sat down to chat at the Gaylord National Harbor and I soon learned that her enthusiasm for her work is infectious:
CC: What are you working on now, Patty?
PB: I’m working as a physical therapist at the Orlando Health MS Center in Florida. I’ve been a part of CMSC for 20 years and I'm currently Secretary of the CMSC Board. I’m also co-chair of IOMSRT with Sue Bennett.
We are, as an organization, looking to educate new and emerging therapists to become interested in MS to deliver the highest quality of care. That’s our goal as an organization.
We’re also advocating to access rehab services because many insurance companies have limitations on their benefits and how many sessions a patient can have, and there’s even more challenges when talking about chronic care.
We’re not the traditional orthopedic model. You don’t get a prescription to get a MS rehab therapist.
CC: I’ve heard from others in the community that it’s not easy to find a therapist specializing in MS. How can we find one?
PB: We are collaborators with the National Multiple Sclerosis Society. They have a database of rehab professionals in their community, but we also have a program called Partners in Care so that your center can be designated as a National MS Society Partners in Care Center.
As an individual you can also partner with NMSS to share where the best resources are.
(NOTE: Check out Partners in Care on The National Multiple Sclerosis Society’s website to learn more about the program.)
CC: There are many people in rural areas who can’t access quality therapists. What can they do about that?
PB: There’s a movement for telemedicine to Skype visit and access more people through technology. We’re not there yet because the delivery of care has to be hands on to provide a good assessment.
One of the ways we handle this in Florida is if a patient can come in for at least one visit, then they can take our data to a local therapist, or I’ll collaborate with their therapist.
We also offer resources on MS to their therapist to help them understand a bigger network on the resources.
CC: Do you use a team approach?
PB: I’m fortunate to be working with our doctors as a team. We are all nearby so nurse practitioners and doctors get together to discuss the patient and we can treat them right there.
We also have the advantage of excellent communications with team meetings once a week to talk about anyone who is having a difficult situation. We work on solving a problem as a team. Everyone is on the same page and sharing information and developing a plan together for the patient to get the best care.
CC: Can you get around the limitations dictated by insurance companies?
PB: Another thing we’re facing at this time, and CMSC and IOMSRT realize it, are the limitations of sessions due to insurance companies, so we’re trying to meet with payers to see what their expectations are and tell them how we want to deliver the best care.
Personally what I do regarding Medicare, where you get a pot of money for the year, is when I evaluate somebody I have to take their resources into consideration. We’ll have a discussion where I can say, “Well this is what your benefit is, either from a private insurer or Medicare.”
We come to an agreement how to best utilize their resources. So I’ll say, “I really need to see you at the front end of this and let’s do therapy once a week for 6 weeks to give you a solid home exercise routine."
Then I’ll re-check you in 6 or 8 weeks. Then I’ll know you’re coming back to me in that amount of time, rather than giving them everything up front and they have no resources for the rest of the year.
It’s more of an ongoing thing so I can monitor and change things. We’re addressing issues but also looking at what we can prevent, what are the things I don’t want you to deal with later on? We don’t want to give you orthopedic issues down the line, i.e. shoulder or neck problems that would complicate things.
CC: Let’s talk about progressive MS. Are there therapies for patients with progressive MS?
PB: Rehabilitation intervention is really key once everything else from a medical team has been put into place for the patient. I think that sometimes there may be other thoughts from a medical team saying there’s nothing they can do for the patient. But we do have emerging research to say that someone with secondary progressive disease can make improvements.
A lot of times we’re looking for intervention data if they’re just remaining stable. We have a lot more information on the negative effects of deconditioning and its impact on your system.
The patient may think when they have a symptom they should do less because of fatigue. They think they can’t do it. That’s a circular kind of pattern.
Well, we can break into that. That’s really key when someone is progressing, that now is not the time to sit back and say there’s nothing to be done.
Something can always be done.
CC: No matter what type of MS a person has, are there therapies they can learn to do at home?
PB: Our main goal is to preserve independence and function so it’s not just a matter of handing a cookbook of exercise programs to the patient. It’s really about analyzing and speaking to an individual to find out what’s important to them, what their priorities are to live their best life.
I work better with them, to help them, when we can work together on their priorities.
CC: So you’re sort of stepping into their shoes.
PB: Yes, it’s my responsibility to ask the right questions, to find out what’s important to you. This is your therapy and your life to live the best one possible given your diagnosis. How can we help you get to where you want to go?
CC: What do you think is the best way to entice people to specialize in MS?
PB: It’s just a matter of showing someone why it’s an exciting field. It’s not for everyone. But you’re really able to use your creativity.
I’ve not met two people with the same MS, and so every day every person is something new and I need to use my creativity and problem solving skills to collaborate with other people.
It makes for a very dynamic and interesting profession to me, and for everyone else, once they get a taste of it.
CC: What would you like to see for the future for rehabilitation?
PB: My dream is for more access to more qualified rehab professionals who really know about us. That’s my mission to educate as many people as we can.
Access to professionals who really know MS. Unless you’re going to a big center you need to reach other areas.
I want to change the mindset that there’s nothing you can do with MS. One of my colleagues was my students who fell in love with MS and she’s here at CMSC and we were able to hire her and we’re working shoulder to shoulder. She passed her MS certification exam.
CC: On social media people aren’t always aware where to go to learn about what’s available to them, so how do readers find out more about what IOMSRT is doing?
PB: CMSC (mscare.org) is all about education, National MS Society (nmss.org) has sections for professionals and resources.
When I first started out I went to every service organization to learn more about MS. I went to local support groups for three years to hear from individuals who have MS to hear what they need, and I was educated by them.
I found my niche.
CC: Are you presenting this week?
PB: I am in charge of programming for the rehabilitation track (Current Topics and Trends in Multiple Sclerosis Rehabilitation) and I am moderating.
CC: Thank you, Patty. It was a pleasure seeing you again. I appreciate you taking the time to speak with me. Thank you for all you do for the MS community. It is greatly appreciated.
This video features Patty Bobryk, PT, Erin Baker, PT, Tracy Carrasco, OT/L, Rebecca Gartell, SLP, and Robert Cohen, PhD, of the Orlando Health MS Center. Learn how rehabilitation can help in the management of MS. For more information on rehabilitation, visithttp://www.nationalMSsociety.org/reha....
NOTE: The following is a description of the rehabilitation track presented at CMSC, followed by the names of the therapists who presented along with their topics:
From 2016 Annual Meeting of the Consortium of Multiple Sclerosis Centers: Current Topics and Trends in MS Rehabilitation - Rehabilitation is an essential and necessary component in the comprehensive care of an individual with MS, at all stages of the disease. The Rehabilitation Track programming will investigate up-to-date information on issues relevant to the overall rehab care of persons with MS. Information will be presented on new and emerging rehabilitation research as well as clinical advances and treatment approaches of interest to MS rehab professionals. (Advanced Level)
my daughter-in-law is an Occupational Therapist which I think is the Australian version of this? She works at helping people return home post surgery and get back to a relatively normal life. It's a wonderful profession.
I had no idea how important rehabilitation therapists were for MS and so wonderful that they are able to begin to offer their services through Skpe to allow more people to access services. I also thought that it was the same as an physical therapist! thanks for letting us know about these services.
Wonderful interview! It is amazing what can be achieved with the appropriate rehab therapy. So interesting to hear about therapists like Patty and their important work. Bravo!
Great interview and such important work. I will be passing this on to people I know who are trying to cope with MS.
Great interview. No one can go it alone. Life just doesn't work that way. We need the expertise of others to know what can lie ahead, and the lifting of spirit, the connection, that happens when smiles or tears are shared... and these and so much more beyond the physical healing that can be facilitated.
Great interview Cathy. Physical therapists, Occupational therapists, Rehabilitation therapists, and their ilk are so important to everyone who suffers an injury or who has a chronic disease or condition, or an acute medical event. I was suffering with my sciatic and my new PT saw me walk and worked on my gait and knock on wood I have not had any real problems since I corrected and pay attention to how I walk.
Cathy this is so interesting and how inspiring that there are so many people willing to learn how to really help. I am looking forward to reading more...
My granddaughter starts her education to become a rehab therapist this fall.
This was such an interesting interview, and it's always good to learn about different fields. What Patty and other therapists are doing is life-changing work.
As someone with MS, I know darn well how very different the disease for every person. So I love her approach to exactly that: "It makes for a very dynamic and interesting profession to me, and for everyone else, once they get a taste of it." It's fabulous to find a professional passionate about approaching the disease with CREATIVITY and true understanding.
Great interview, Cathy, filled with inspiration and information. Cheers!
I do not have MS, but I am interested in finding a rehabilitation therapist for help with nerve damage in my left leg and foot due to a herniated disc and surgery from almost 30 years ago. Reading your post has been very encouraging.
Thank you Shifrachester, for your amazing discussion. I am looking to learn more about MS. Is there more resource that I can get online? Oh, it was a great interview indeed.
WOW! So much helpful information in this. Thank you for sharing. I hope that these kind of therapies are coming more and more popular and easy to come by. It's so important everyone is getting the care and attention they need.
Great post! Also medical marijuana can be very helpful when living with MS. Thanks for sharing!
Thank you so much for conducting such a valuable interview and sharing it with us. You have cleared up a lot of confusions. I had been wondering about convincing my aunt to get this treatment since she is showing a lot of these signs.
what a wonderful article/interview Cathy! thanks so much for your help to raise awareness around MS.
best,
diana