From Worse to Better: The Backwards Patient
From all we have heard and read about multiple sclerosis, it seems inevitable that the only direction a patient’s abilities will go is downward. So many stories of our fellow patients’ decline and grief and tragic circumstances prevail on MS forums and our hearts go out to them. We feel bad for them and scared for ourselves. Perhaps you are a person with MS that could walk or drive last year—but this year, the proverbial rug has been pulled out from under you. It can happen to any of us at any time. But there is something else that can happen to any of us at any time. It can be a very different kind of journey. A journey from worse to better, from dysfunction to restoration. The story of tragic decline in reverse, the story of a backwards patient.
The concept of reversal isn’t a new one. It is couched in myth and romantic fantasy, the most well-known being the character of Merlin the wizard in the tales of King Arthur. As the legend goes, Merlin was born an old man and grew younger as the years went on. The 2008 movie THE CURIOUS CASE OF BENJAMIN BUTTON, based on a 1922 short story by F. Scott Fitzgerald, featured a man (Brad Pitt) born old who, over a normal lifespan, grew younger and younger until he reached infancy and finally, oblivion. In every story of human endeavor, whether characters are born young and grow old or born old and grow young, whether their MS worsens or goes into lifelong remission, the end is the same. It’s the journey that’s the thing.
Your journey can take a turn down a smoother road under several circumstances. One is with the intervention of medical science. For example, researchers at the Kessler Foundation in New Jersey conducted a 2013 study that addressed the psychosocial effects of MS via rehabilitative techniques that improve cognitive function, depression, and emotion. “Memory tests and questionnaires to assess anxiety, depression, and other parameters were completed by trial participants before, immediately following completion of training, and 6 months after completion...” More patients improved in the group that received testing than those in the control group. Other medical intervention studies involve stem cell implantation to stimulate nerve repair and various treatments that protect myelin from further damage.
Besides medical intervention that can be measured and supported with replicated clinical trials and repeatable results, there is the vast realm of anecdotal interventions reported by patients as having reversed their disabilities or reduced their relapses. One of the more famous accounts is that of Terry Wahls, MD, who has written about her journey from needing a wheelchair to full mobility and virtually complete reversal of her secondary progressive MS by eating a strict regimen based on a Paleo diet she created. Though diets touted as being “MS diets” fall under a great deal of scrutiny, everyone can agree that the numerous health benefits of eating less junk and more fresh food make doing so worthwhile whether or not it improves the symptoms of MS.
There are so many anecdotal accounts of symptom improvements and uncharacteristic remissions. A woman I’m very close to recently confided her sexual reawakening and what prompted it. Her libido had disappeared after her first MS attack many years ago. After years went by, it returned, but was a shadow of its former self. Some years after that, she realized that she needed visual stimulation now as well as using intimacy aids. Having more frequent sex, she told me, also seemed to improve her muscle spasticity, pain, flexibility, mood, and outlook—not from the exercise itself, but from the surge of endorphins. This is her theory and who knows if it’s accurate. It hardly matters. Taking a different approach to sex might fall under the heading of occupational therapy, but that hardly matters either. She's enjoyed a reversal of sexual dysfunction and its residual improvement of muscle stiffness, pain, and mood.
Whether we find restoration in medical treatment, dietary changes, or personal experimentation, we can all become the happy recipients of positive change in the course of this progressive disease that seems to head in only one direction. Let’s try to think of it more like an elevator: It can go down, but it can also go up.1
How well do people around you understand MS?