Trying to live well with a neurological condition makes neuroplasticity my holy grail, but the brain’s ability to reorganize itself is only part of the equation. Reincorporating muscles, tendons, ligaments, and joints that have been offline due to disuse is just as important. For the past month I’ve been adopting a new rehabilitation approach that involves all the above.
Stumbling upon MS information, has become my superpower. Finding MS patients and their recommendations regarding AFOs, medicines, therapies, equipment, nutrition, and exercise has been unbelievably helpful. Not knowing specific details about these people to see if what works for them might also work for me drives me a little crazy. I’ve already wasted 11 years. Wasting more time trying stuff that I never would’ve considered had I known all the facts annoys the hell out of me.
Because of that let me break down my own details, so you don’t waste your time.
- I’m a 52-year-old married, upper-middle-class, white, non-working mom of adult children. (In other words, I have health insurance, plenty of time to try out different forms of exercise, and can afford to try out the therapies I stumble upon.)
- I receive Ocrevus infusions twice a year. I take 5000 IUs of vitamin D four times a week and monthly B12 Shots. Likewise, I’ve been hypothyroid for 27 years after having my thyroid ablated in response to Grave’s Disease and take Levothyroxine for that.
- I see a NeuroKinetic Chiropractor every two weeks.
- I have avoided COVID-19 so far.
- Furthermore, I was DX with Multiple Sclerosis in 2009. Lesions appeared on my brain before obvious symptoms showed up in my life.
- For three years I only experienced foot drop and fatigue in response to heat (90 degrees F or above)
- In 2012, I had a relapse that resulted in a weak left side.
- From April 2012 – January 2017, I slowly became more disabled on my left side.
- From January 2017 – January 2021, I made a variety of improvements: Decreased nerve glide pain; Improved connective tissue mobility; Improved joint ROM; Increased muscle strength; Increased balance and weight-bearing abilities.
- Currently, my entire left side remains weak which affects my functional, daily, activities and mobility.
- Although living with MS is harder and can be exhausting some days, I don’t suffer from chronic fatigue, chronic pain or severe brain fog.
- I wear an AFO for severe foot drop, walk with a cane when I leave the house and don’t use my left hand or arm for much of anything.
- The following therapies and techniques have helped me by allowing for carry-over and building upon one another: (NeuroKinetic Therapy, Controlled Articular Rotations (CARS), Frequency Specific Microcurrents, Neurologically Based Physical Therapy)
- Other techniques (Myofascial Massage, Feldenkrais, Yoga, Walking, Assisted stretching, Traditional Chiropractic adjustments, Hand therapy, Anat Banial Method and Rolfing) worked great for a day but didn’t result in lasting functional movement changes.
Don’t get me wrong. A myofascial massage is wonderful. But if my spasticity returns the next day, it’s hard to justify the expense after a while. Now that I have found other things that work for me, I hope to explore massage therapy again post Covid-19.
So why share all the above information? Besides not having a cure, no one knows what causes MS and some experts can’t even agree on what it is. 100 MS patients in a room would have different symptoms, disease progression, and benefit from different drugs and therapies. Because MS affects everyone differently, full disclosure matters.
Reading MS success stories is a little like watching your favorite Real Housewife get her Botox shot in Episode one only to hear about the launch of her new skincare line during the Reunion Show. Is it the Botox, the horse placenta serum she’s selling for $150 a jar, or her Instagram filters that are doing the trick? What exactly is she trying to sell me?
Hearing that yoga fixed your MS pain is awesome. But if I don’t also know what you’re eating, how long you’ve had it, if you often relapse, what disease-modifying drugs you take, and how stressful your daily life is, why should I assume that your yoga regimen would help my MS?
Likewise, an elderly single man with 2 minimum-wage jobs, raising his three grandkids without any help from his shitty ex- wife who suffers from constant pain and exhaustion, might not have the budget or energy to sample a yoga class. He might want to spend his cash on medical cannabis for MS pain and download a free meditation APP onto his phone.
I’m not a doctor, but I too want to first do no harm. Being upfront with you is a great way to achieve that. I’ve written a couple blog posts that will break down what I’m trying and what’s working… for me. I have no idea if it will work for you. Hence, the sharing of all my dirty details to help you make the best choice… for you.
MS sucks. But being disappointed by something you were hoping would help, sucks even more.
Photo Credit: Unsplash / Michael Carruth
2 Comments Add yours
Linda, I truly love reading your blog. As you know, we take care of Ray who has muscular dystrophy. And although they are completely different diseases, your tenacity in finding what helps you and sharing with others is inspiring. We were told when Ray was first diagnosed that there was no treatment and no cure. But since that time we have found several medicines that are helpful in dealing with the tightness in his legs and pain. At our last appt with the muscular dystrophy doctor he told us of a very promising treatment/cure which is in clinical trials and should be available in about 2 years. So, like you, Linda, we will keep striving each day until his disease with “no treatment and no cure” will indeed be cured.
So nice to hear from you, Mrs. Pittman. Thanks so much 🙂 That’s great news about the upcoming treatment. What type of MD does Ray have? A dear friend of mine has FSH MD – I wonder if the drug you’re referring to can possibly help her? Keep me posted on how that goes and please give my best to everyone.