I have friends who say they love breaking a sweat when they work out. To me breaking a sweat means I’m having another hot flash.
I’ve never been good about sticking to any exercise program; instead I’ve wasted a lot of time and money on gym memberships that I never renewed. In my early twenties I religiously worked out at home with Jane Fonda in our respective leg warmers and headbands. That didn’t last long.
When I was 26 I was diagnosed with Multiple Sclerosis and quickly began living my “new normal” that included permanent numbness, loss of balance and heavy bouts of fatigue. I focused on getting through my days as best as I could without feeling deep pangs of guilt that I wasn’t getting any exercise.
I became a mother at 34 and knew it’d take all of my inner strength and physical energy to be the best mother I could be. Once again, exercise took a back seat.
Looking back I regret not being more committed to an exercise regimen. I wish I had the means to hire a personal trainer because that’s what I needed; someone who would make me accountable to a weekly workout.
Now that I’m in my fifties I know there’s a strong relationship between exercise and good health. It can improve strength, provide better cardiovascular fitness, help with fatigue and depression, and contribute toward maintaining an overall positive attitude. (Read this article about exercise from The National Multiple Sclerosis Society.)
So when I ran into my former neurologist, Dr. Mary Ann Picone, Medical Director of the Multiple Sclerosis Comprehensive Care Center at Holy Name Hospital when I was attending The Consortium of Multiple Sclerosis Center’s Annual Meeting, I was excited to learn about a new study she’s working on that could help people with MS adhere to an exercise program.
In her study, funded by FCMSC (Foundation for the Consortium of Multiple Sclerosis Centers), she used technology (a Fitbit and FaceTime) for patients who received an individualized workout program and were then monitored using FaceTime.
How simple and brilliant is that?
I asked Dr. Picone to explain her study further for us, because it’s my belief that the results have the potential of making a tremendous difference for many in the disability community.
CC: What made you decide there was a need to conduct a program to monitor patients at home with an exercise program?
MAP: Everyone knows how important exercise is and how helpful physical therapy can be in improving function. However, it is often difficult for some patients to get to therapy because of lack of transportation and/or lack of insurance coverage.
Another problem is adhering to an exercise program once it is started.
Since technology can be so helpful these days we thought we’d try to utilize it to allow patients access to physical therapy and at-home monitoring that they would not have been able to get otherwise.
Having the ability to FaceTime would allow us to track patients and adjust their exercise regimen as needed, and provide encouragement to maintain the program.
Use of the FitBit was another way to help motivate patients to do more. By using an iPad and having a physical therapist devise an individualized rehabilitation program for each person, then using FaceTime, a Fit Bit and reassessing each person at the end of 12 weeks, we could see if this was feasible, if patients liked it, and most importantly if we saw signs of improvement at the end of 12 weeks.
Jason Kavountzis, Head of the Physical Therapy Department at Holy Name, assessed each patient initially and videoed a program for them on an iPad.
Each person took them home, and Hunter Vincent (then a fourth year medical student at Touro University Medical School who was working with me at the Holy Name MS Center saw the challenges that patients faced. He applied for a Student Research grant from CMSC) also assessed the patient and did FaceTime to monitor them every two weeks throughout the course of the trial.
CC: How did you decide which patients qualified for your study? What types of MS did the patients have? Can patients with progressive MS take part?
MAP: Anyone diagnosed with MS who needed rehabilitation, was having difficulty accessing care, and had Wifi capabilities at home was able to qualify. We were looking for a variety of patients with various levels of disability.
We were able to have 8 patients in the trial ranging from having mild lower extremity weakness but primarily with balance problems to patients using a cane either occasionally or all the time to someone who needed a walker for ambulation.
One person who entered the trial had never been involved in a formal exercise program. Patients with either relapsing or progressive MS could take part. There were 7 women and one man in the study. We wanted to see if this program would work for patients with various levels of ability.
CC: What were the results of your study?
MAP: Each patient in the trial was assessed initially and had baseline testing to evaluate various measures such as fatigue, quality of life scales, time to walk 25 feet and a balance test called Tinetti Balance, and how quickly they could get up from a sitting position.
Several patients had not used an iPad before so they needed to learn how to use it and FaceTime. Everyone learned the technology.
Patients showed improvement in their walking, balance and overall quality of life at the end of the 12 weeks. Having to check in every two weeks was very helpful for support and adjustment of routine if necessary.
It improved everyone’s confidence level. Several patients who had been very anxious about using the iPad, Wifi and the FitBit were thrilled about the knowledge they gained.
We presented this study at CMSC in Indianapolis and Hunter won First Prize for Best Platform in Patient and Family Education!
CC: How will these results be used? What is the next step?
MAP: Although there was improvement at the end of the 12 weeks, the next challenge is whether these benefits can be maintained. Twelve weeks may not be long enough to produce long-term change in lifestyle. We think six months is needed.
We would like to do a six-month study, look at FaceTime monitoring every two weeks, and include both a nutritional component to looking at improving a patient’s diet and a psychological component that would help with trying to overcome any obstacles to maintaining a healthy diet and exercise program.
The next step is to also compare this to inpatient rehabilitation.
CC: How do you envision the study’s results to be used down the road for more patients in need?
MAP: I would like to see this technology expanded to allow more patients access to an individualized rehabilitation program that they can do at home with remote supervision and occasional inpatient visits for patients who would not otherwise be able to have rehabilitation.
This could even be used globally. I have a patient from Egypt who comes to the center and is using the iPad exercises for at home rehab program!
We want to enable patients to overcome obstacles to care.
CC: Who was involved in your study?
MAP: As stated above, Jason Kavountzis, Head of the Physical Therapy Department at Holy Name Medical Center, Dr. Hunter Vincent who was a fourth year medical student and interested in improving the care of patients with MS (and will be entering Physical Medicine and Rehabilitation Residency), Dr. Fred Foley, Head of Neuropsychology at the MS Center who helped with the statistics and me, Dr. Mary Ann Picone, as the faculty mentor for the study.
CC: Any other thoughts?
MAP: We are grateful to the Foundation of the CMSC for supporting medical student research initiatives.
Our goal is to find ways to improve the lives of patients living with MS and to encourage smart, enthusiastic medical students to become interns, residents and physicians who will continue to improve care in MS.
END NOTE: At the CMSC event in Indianapolis Dr. Hunter Vincent received the award for The Best Platform in Patient and Family Education. He was also designated as the June Halper Medical Student Research Scholar by FCMSC’s selection committee. Congratulations Hunter!