Since my one and only relapse in 2012, I’ve used the following products, therapies, experts and types of equipment to varying degrees of success to treat and/or slow my multiple sclerosis. I update this list frequently and as of June 2019, the items in BOLD below are the products, therapies, professionals and equipment currently floating my boat:
- Elevate Foot Brace Allowed me to walk with a cane for over 2 years as my MS continued to progress.
- Drop Foot Brace Helped me walk around my home but didn’t help me walk outside.
- Dynamic Bracing Solutions (DBS) A customized ankle-knee-orthotic (AFO) that uses the momentum of movement to allow patients with a variety of disabilities walk again. My DBS Dynamo is John Logue of Gait Dynamics, located in Pikesville MD which is outside of Baltimore. You can read about my experiences starting with this post.
Step-Smart® Brace for Drop Foot has been a game changer for me due to it’s lightness and ability to fit inside a normal shoe without needing adjustments from a cobler.
- Yoga Hands and Yoga Toes Great for battling hand contracture and for increasing toe and foot movements.
- Neurokinetic Therapy based on the science of motor control theory, states that the brain’s motor cortex stores all movement and coordination patterns of the body. A sick or injured body often learns “movement detours” out of necessity. Neurokinetic therapy helps the nervous system re-learn proper movement patterns. Honestly this therapy has been a game changer for me along with FSM (see below).
- Frequency Specific Microcurrent (FSM) uses specific frequencies to encourage natural healing of the body and reduce pain. Personally, FSM softens my muscles and reduces the amount of spasticity in my body which is slowly improving my gait and mobility.
- Electric Stimulation and TENS Device Great for keeping muscles stimulated and to decrease muscular pain.
- Active Hands Helps me grab on to exercise equipment with my weak hand.
- Conductive Sock and Conductive Glove A great way to stimulate my entire hand and foot.
- Melt Method Helps lengthen fascia and hydrate connective tissues.
- Whole Body Vibration Helps to increase circulation, flexibility and improve range of motion on the weaker side of my body.
- Elbow Stabilizer Keeps my elbow from bending which allows me to better stretch my arm.
- Over-The-Door Exerciser Improves gross arm movements.
- Yoga Once it became too difficult to attend public classes, I started doing Chair Yoga at home. It’s a wonderful prop that allows you to safely perform your fullest expression of an asana.
- Physical Therapy It works until it stops working. I’ve yet to find a therapist willing to work outside of the traditional therapy box but I don’t blame them since healthcare is more about making money and less about making progress. However, through PT I’ve learned some great exercises, stretches and movements to try at home on my own.
- Chiropractic Care When you limp, getting an adjustment can be a God’s send. The chiropractic world taught me about the importance of a TENS device, Electric Stimulation, and Whole Body Vibration. In 2018, I discovered Neurokinetic Therapy and Frequency Specific Microcurrent through Dr. Deborah Morrone, owner of Frederick Chiropractic Wellness. I’ve been seeing her weekly for the past 8 months.
- Myofascial Release Massage A wonderful way to decrease pain and increase range of movement. Aaron Exum of Frederick Bodywork is my go-to Manual Therapist Wunderdude here in Frederick, MD.
- Feldenkrais A movement therapy that teaches you how to move with ease. Created in the 1940s by Moshe Feldenkrais and based on the theory of neuroplasticity back before anyone knew what that was. Hannah Vo-Dinh of Mind Body Sense is my go-to gal for all things Feldenkrais in Frederick, MD.
- Anat Baniel Method A student of Feldenkrais, Anat Baniel started her own namesake method that she refers to as Neuromovement. Based on her 9 Essentials, like Feldenkrais, it provides new motion patterns to the brain similar to when we were infants, mapping out our own neocortex through curiosity and movement. I worked with Lianne Keenan in Leesburg, VA back in 2014.
- Somatic Experiencing A body oriented approach used to heal the trauma and stress disorders that de-regulate our autonomic nervous system. Alicia Barmon of Ahimsa Therapy is my go-to Super Fabulous SE Guru in Frederick, MD.
- Smart Body, Smart Mind An amazing, online course run by nervous system specialist, Irene Lyon. Based on a new science called “The New Traumatology” she pulls information from multiple sources, namely the work of Dr.Peter Levine, Dr.Robert Scaer, Dr. Bruce Perry, and her own professional expertise which involves: Somatic Experiencing, Feldenkrais, Physiotherapy and BioMedical Research. Specifically, her course teaches you:
- How to tune into your key stress organs so you can de-stress from the inside out.
- Exercises to help settle and soothe the buzzing energy of trapped stress.
- Ways to wake-up your internal body awareness, also known as your “interoceptive” sense, which will deepen your sense of self and better connect you to YOU!
- Areas in your body that can act as “go-to” management spaces to help you to stay tuned in to your stress patterns.
- Ways to build greater space in your body which will allow more room for shifts and changes to occurs with greater ease and less tension.
- Mini Trampoline Allows for lymph movement in a body that never gets to jump or move quickly.
- Rowing Machine Allows you to sit and safely workout your entire body which is great when you’re losing the ability to stand or walk safely.
- Elliptical Machine A great way to exercise if you have foot drop because your foot remains stationary.
- When the risk of tripping is taken away you can focus on raising your heart rate, moving your arms, and working your quad and calf muscles. (If holding onto an elliptical is hard, purchase the Active Hands grip aid mentioned above).
- Research has shown that “Following the elliptical exercise training program, significant increases were found for both joint torques and powers such that the MS patients gait parameters moved closer to those of the healthy controls and were no longer significantly different. These results agree with our hypothesis and provide exhilarating support for the use of elliptical exercise training as a rehabilitation tool for MS patients.”
For me the Alinker walking bike is a cross between a mobility aid and a piece of exercise equipment. Currently I’m using mine solely for exercise. Once I strengthen this crazy body, I hope to use it as a functional mobility aid.
As you can see, I’ve spent a ton of money, time and mental energy searching for, finding and purchasing products, sessions, therapies and equipment. The craziest part is that 21 out of the 29 entries listed above, I discovered completely on my own!
When you’re diagnosed with a disease you’re not handed a pamphlet that tells you what to try as your functional, day-to-day life deteriorates. Instead, you spend most of your appointment discussing the latest pharmaceuticals on the market or being tested. You spend the remaining time discussing the shitty, side effects of said drug options. Then because you tripped and took a header on the way to your car outside your neurologist’s office, you go straight home and hit the internet for more options to help with your Igor-like gait.
Even when I’ve gone to Physical Therapy I was never given orthotic options unless I specifically asked for them myself. I had them delivered to my home, would try them out alone and return them without any professional assistance.
The only reason I stayed upright and walking for years was because of the Elevate foot drop brace that I found online. I figured out shoe options and worked with a cobbler to modify footwear on my own. I’ve also shared the information with my doctor but have no idea if others have benefited from what I’ve learned. This not so pretty, bulky, brace was the only reason I remained independent for years and it was based on a fluke, Google search.
In fact, it was my search to see if a better foot drop solution had been invented that led me to the Dynamic Bracing Solutions website in the first place. DBS has been my most expensive therapuetic investment so far. Although it helped me walk over 16,000 steps one day, it never allowed me to ditch my walking aids completely. But it did strengthen my leg enough that I could advance to something lighter and purchase a Step-Smart brace at a fraction of the cost.
I can’t help but wonder how my life and bank account would’ve been different if health care professionals were paid to sit and think instead of being forced to focus first on their billable services.
You see, doctors and therapists can’t bill you for thinking. Their employers won’t pay them for thinking either. They’re expected to spend 80% of their day providing billable services. That extra 20% is used up walking between patient rooms, hitting the head, washing their hands, disinfecting their office between patients, checking the consult board, waiting to use a computer, grabbing or putting away patient files, tracking down a doctor to write an order and speaking with co-workers regarding work issues.
They can’t bill for searching the internet, reading online professional journals, keeping abreast of the latest products and research developments, or the newest therapy techniques. Now that healthcare is run like a factory and patients are viewed as widgets, employers don’t pay for professionals to do this important aspect of their job.
They do that shit on their own, at home which means you’ll need to do this shit on your own, at home as well.