For the last eight years:
- I can easily walk around my home with and without an AFO and without using a cane.
- I grab onto walls and furniture as needed.
- I can walk outside with an AFO and cane for 20 minutes maximum before stopping to rest.
- I can walk 1.5 MPH on a treadmill with an AFO for 10 minutes before stopping to rest.
Because I’ve had mobility issues since 2012, I’m happy to still be upright. Not getting worse is cool. Not getting better is frustrating. But stumbling on the YouTube channel for Orlando Neuro Therapy and finding new resources was super exciting.
I spent about 3 weeks watching videos, taking notes, and trying out different exercises to figure out what to focus on and where to begin. I quickly realized that I needed to go back to basics, so I started with standing and shifting my midline.
Why work on midline shifting instead of jumping on the treadmill for 10 minutes? Because these simple movements are foundational to walking well. If you can’t fully bear weight on your leg, walking will be tough. So I scrapped all the stuff I had been doing and started from scratch.
Balance/Midline Shifting: When you limp, you walk with a wider stance for many reasons. Use a cane, and that stance gets even wider. Eventually, standing with your legs close together becomes harder, so you lean against walls or counters and sit whenever possible. Increasing my standing awareness led to better sitting and walking awareness. Eventually, I began to shift my midline in more complicated ways and for longer periods of time.
Exercising while kneeling: Another huge change involved breaking abnormal synergistic muscle patterns that my weakness and limping created. I can’t march in place, bend my knee or lift my leg to climb steps. Because of this, my hip and knee are always extended (when standing or laying down) or flexed (when I sit). Gone is my knee’s ability to work independently of my hip or vice versa.
Since 2014 I’ve blamed this on weak hamstrings. I never knew until a month ago that first, I had to break the unhealthy, co-dependent relationship that was going on between my knee and my hip. It turns out that kneeling on the floor allows my hip to extend while forcing my knee to flex.
Lastly, I’ve been using a Core Max to build up my quadriceps and force my hip into flexion. Remember, I can’t bend/lift my knee. Core Max does that for me, which reminds my brain what it feels like to move in certain ways.
If standing is tough for you, there are lots of exercises you can do while seated. If you have trouble sitting up, start with movements you can do from your bed. When it comes to rehabilitation, there’s always a modification that can be applied and Dr. Tobias covers all of these options on her channel. The key is to become a witness who can observe without judgment, accept where you are, and start there.
When I realized I had to start all the way back at standing and weight-bearing, I thought to myself, “Are you kidding me? I’ve been working with physical therapists since 2012. Why is this new information to me”?
The answer is simple. It appears that Dr. Tobias works with a lot of stroke victims. In other words her patients are fine one day only to wake up post stroke having hit their rehabilitative rock bottom. They start from where they are, in some cases, starting from scratch. Like the Six Million Dollar Man, they must completely rebuild their mobility skills.
In patients with progressive disorders like MS, we decline over time. Instead of waking up shocked to know we’ve lost the ability to walk, we wake up only to notice a change in foot flexion. Hell, the first time I went to physical therapy, I could still run. Why would anyone teach me midline shifting skills? Instead, we did strengthening exercises.
Sadly, years go by, more movements disappear, and more adaptations are created to keep moving. You change doctors, try different therapies, go back to physical therapy or find a brace to wear. You stumble on trainers and instructors that know a lot about movement but may not have any experience on how to modify their programs for people who are losing their skills. Oh, and I haven’t even mentioned what happens when you throw in the changes brought on by disease modifying or symptom specific medications.
It’s all so random. You’re trying to stop a disease from getting worse while trying to regain skills you’ve lost which requires a very different therapy plan. So I decided, “What the hell, why not try swaying”? Low and behold, after 1 week of swaying, I noticed a difference when sitting, standing, and walking! So I watched more videos, added more challenges, and after two weeks, I noticed that:
- My knee stopped hyper-extending which has significantly changed standing, walking, and stair climbing.
- I stopped collapsing down into my hip when sitting, standing, and walking.
- My quadriceps, hip, and torso were a little stronger, which is positively affecting my gait.
Around week three, as I was walking around the grocery store I could feel my brain trying to integrate these new movements into my current gait pattern. For years my knee locked when walking and then one day, I’m walking with a soft, bendable knee. What the hell? It was confusing, exciting, and frankly, dangerous. It’s hard not to trip while you think about walking differently while trying to stay 6 feet away from everyone while trying to remember what you need for your daughter’s crab dip recipe.
But it’s that kind of integration that matters most for people with chronic conditions. How do you safely add a movement to a messed up system? Exhibiting a movement while lying on a therapy table is great, but we don’t live on therapy tables. Integrating motion into functional movement situations is what brings about permanent change. So if you’re working hard but do not notice functional improvements, it might be time to step back and re-evaluate your basic skills and abilities and start there.
Healing isn’t linear. You don’t go from unhealthy straight to healthy because it’s a circular process. After making a healthy choice, you return to the same pain, sensations, symptoms, and outcomes. Integrating the changes you’ve made into an impaired body takes time, but eventually, the body becomes more resilient for the next rotation. By discovering, adding, and then integrating change, you slowly transform into an embodied, cohesive being.
Learning something new is easy. Applying what you learn to your life is hard. Doing all of that while living with a chronic condition is difficult. It takes double the work and time to make improvements, so be gentle with yourself.
If you can’t find neurologically based professionals to help with your MS, it’s awesome to know they exist online. Honestly, this is the stuff that keeps me going. Thank you Dr. Tobias for sharing your knowledge online.
Please Note: All the above videos are from Orlando Neuro Therapy’s YouTube channel. I get no kickbacks. I just really like what she’s offering, and it’s helping me, so I’m sharing this information with you. Although I’m not a physical therapist, being a speech therapist I understand the rehabilitation world. Since I’ve been receiving physical therapy off and on for the last nine years I know a good resource when I see it.
If you live in Florida, give her a call. If you’re far away like me, subscribe to her channel. And if you have access to your own physical therapist, by all means, see what they think. Oh, and talk with your doctor.
I had a virtual appointment with my Physician’s Assistant (PA) this week. We talked about Ocrevus, the COVID-19 vaccine, the Canadian PONS clinics and of course all the new exercises I’ve been playing with. Before we hung up she said when she sees me on her schedule she thinks, “I wonder what new thing Linda’s discovered that she’s going to tell me about today”? Then she said, “I’ll definitely check out this PT and mention her to my other patients”. Sometime having MS makes me feel lie a crazy person. But sometimes it gives me the opportunity to feel like the old me who used to help people.
Lastly, if you understood the above Six Million Dollar Man reference, you’re cool of course, but you’re also pretty damn old. Regardless you’ve earned this blast from your past. Enjoy: