MS brings a daughter closer to her mother as they search for ways to stay healthy, despite the disease.
By Amy Meisner-Threet, MSW, with Florence Meisner, RN
Like many mothers and daughters, as each of us became more independent from each other over the years, it became harder for my mother and I to communicate with each other. It was almost comical. As my mom began to have some hearing loss over the last few years, she claimed to be able to “hear everyone but my daughter.” I do have kind of a gravelly voice (think Demi Moore or Kathleen Turner), but I still feel there is something Freudian going on here.
If there is one positive result of my having been diagnosed with multiple sclerosis (MS), it is that it brought my mother and me closer.
My mother, Florence, has been a registered nurse (RN) since 1981. She and my sister, who is now deceased and who was also a nurse, were immediately very involved in my care upon my diagnosis of MS in 1996. A former dancer and exercise trainer, I was at that time working toward my masters in social work. I was extremely resistant to following most protocols that were suggested to me. Treatments like apitherapy (utilizing bees for their stings) sounded too dramatic and painful, although many swear by it, and there weren’t many clearly FDA-approved choices at the time. So, I wasn’t sure exactly which way to turn. I was lucky to have my mom.
Alternative Paths, Together
MS is a condition that affects the white matter of the central nervous system (CNS) that runs through the brain and spinal cord. The white matter of the nerve fiber is called the axon which is insulated by myelin. In MS the fiber in the CNS develops patches of demyelination. This damage occurs in many (multiple) scattered areas. The damaged areas become filled with scars (sclerosis) tissue.
Once I was diagnosed as having the chronic primary-progressive form of the disease (the type of MS is generally determined by the time lapse, intensity, and level of functionality following the first exacerbation), my mom and I soon realized that most of the research was concentrated on the relapsing-remitting type of MS. This is where most medical progress for patients is shown.
After doing some of the traditional therapies and continuing to have exacerbations and progressively getting worse, I felt very discouraged, as did my mom. However, although traditionally medically trained, my mother has always been a strong believer in holistic modalities for all illnesses. She has never given up on me. She simply refuses. So, we embarked on a journey together which began about 3 years ago.
My mom has been practicing yoga since the 1970s, way before it was chic. I would make fun of her when I came home to find her on her head or sitting with her legs crossed, meditating. I felt that since I was a dancer, I didn’t need to do any of “that kind of stuff.” It took the crisis of having MS to lead me to yoga, Reiki, and meditation. Or, I should say, for Mom to lead me on this alternative path. Mom and I even took a Chi Gong workshop together. So, through research and various contacts of my mother’s, she put together a program for me to follow.
A Mother-Daughter Diet
We are currently on an antiinflammatory, anti-allergy, healing diet eliminating gluten (white and wheat flour found in breads, pastas, etc.), dairy products, as well as all meat, poultry, and eggs. Certain types of fish are allowed as long as they are not shellfish, raw fish (e.g. sushi), and should preferably be fresh water fish (Alaskan salmon is highly recommended). Replacements in the diet are proteins with amino acids, shakes with protein powder, fruits and vegetables, brown rice and beans, soy products, no refi ned sugar, (honey and some brown sugar) and essential fatty acids.
Stores like Trader Joes carry some really delicious gluten free products. (And for those of us on fixed incomes, here’s another plus: They accept food stamps.) There are gluten-free breads, and with some soy cream cheese (especially garlic and herb) the bread can be tasty. There are rice crackers which I have gotten addicted to snacking on. I am supposed to be abstaining from alcohol which is not a challenge for me.
It is considered advantageous to remain on this regime for at least 6 months. This diet has been supervised by a nurse with a Masters of Science in Natural Health. Although I do admit missing certain foods (oh, what I wouldn’t give for a slice of good New York pizza!), I was a vegetarian for many years when I was in my teens and early twenties, and feel that this is going to be a permanent transition.
Although I have been using a motorized wheelchair to get around outside of my home, I walk independently or with the use of a cane at home. My skin looks better, I have lost weight over the past year and maintained it, which are certainly positive benefits. Generally, I do feel better and have more energy and I’m able to be more productive.
My mom encourages me to use various supplements like Gingko-Biloba, which is a natural supplement indicated in enhancing ones’ memory. This is a plus for anyone over 40, but particularly heartening for one with cognitive deficits associated with illnesses like MS, Alzheimer’s, Parkinson’s and others. There are numerous supplements indicated for MS, most available at General Nutrition Center or your local pharmacy or health food store.
Separating Again
During the time that I was working on this article, my mom and I experienced another life-changing event. After being on a waiting list for five years (typical for New York City) I learned of an opening for an affordable, accessible apartment in the East Village and I decided to grab it.
For the past few years I had been living in the same building as my mother outside of Manhattan. We would spend a lot of time together and share meals. We have admitted to each other that we are experiencing some “separation anxiety.” We will see each other a few times a week.
I am so grateful to my mother’s absolute resolve not to give up on keeping me as healthy as I can be despite an initially grim prognosis. So after 10 years, I am doing infinitely better than anyone, even my doctors, would have predicted. I do adhere to some traditional treatments combined with the dietary and physical life changes. The future is still uncertain for myself and anyone else with this incurable disease. But, thank goodness, when I want and need some nice, solid grounding, I’ve always got my mom.
Amy Meisner-Threet, MSW, is a regular contributor to Action. Florence Meisner, RN, is Amy’s mother.
