Five things in the news about MS

As I do research each month to try and find new ideas and discoveries in the news about Multiple Sclerosis, I'm finding new ideas difficult to find this month.

A white paper published in March by the National MS Society titled Wellness for People with MS outlines the findings from a group of professionals. 

This excerpt from the paper summarizes their findings.

People living with MS identify wellness as a high priority in their lives. They want to know what they can do today – particularly related to diet, exercise and emotional wellness – to feel and function at their best. In addition, they want the support of knowledgeable healthcare professionals who are armed with accurate information about wellness interventions, as they pursue their wellness goals. At a recent meeting convened by the National MS Society, people with MS, healthcare professionals, researchers and society staff summarized what is currently known about diet, exercise and emotional issues in MS; identified key questions to be answered in each of these areas, along with the research gaps and challenges to be addressed in order to arrive at the answers; made specific program recommendations to ensure that people living with MS are getting the personalized support and information they need to achieve wellness; and outlined next steps to move this important priority forward.

After reading this paper, I reflect back on my history and on moving forward. I have so many unanswered questions.  Obesity has been a major issue in my life both as a child and as an adult with MS. Approximately ten years ago, I underwent a gastric bypass and had extreme success. I was able to lose 200 pounds. The following year, I was diagnoses with MS. However, doctors felt that I probably had been living with the disease for many years. I have been obese my entire life and probably my heaviest between 20 and 30 years of age. Was MS caused by dietary intake?  The answers to this question has not been researched enough. Does dietary intake increase relapses?  What role does exercise play in MS?  Hopefully with new research we will finally get some answers to these questions. Over the past ten years, I maintained the weight loss up until year eight, when I gradually started gaining again.  I immediately returned to the  weight loss experts, who didn't have enough data past eight years post op to give me any direct answers, and continue to struggle with definitive answers about obesity.  

So where does that leave us as patients?  Here is what I know and what my research seems to make me believe.  

Eating healthy,nutritious food is essential in managing life with MS.  There is no miracle diet in MS.  Some believe in a low saturated fat diet, gluten free diets, fruit instead of refined sugar, no diet sodas, low fat dairy products, Paleo Diet and the list goes on.  All of this is just very confusing to me.  What I've learned is no one diet works for everyone. Keep saturated fats below 15 gms a day.   That's a basic fact for anyone. It's really OK to have a piece of birthday cake. Don't do it every day, choose fruits more often. Eat vegetables (easier said than done for some of us). Asparatane,  caffeine and alcohol can increase bladder issues if you have those health problems related to MS.  However, you aren't going to get MS by drinking diet soda.  As for the caffeine, it might reak havoc with your sleep.  There have been studies that suggest a higher incidence of gluten intolerance in MS patients and their family members. This doesn't mean every MS patient should be gluten free.  Hopefully, my thoughts are are depicting my true thoughts. There are no definite answers.  What works or doesn't work for me may or may not work for you. Try things, be open to new ideas. Maybe one thing will work.

That leads me to exercise.  Move it or lose it seems like a good place to start. That said, for those of us with MS this is not always easy. I know it sure isn't for me. My balance fatigue and general health make exercise very difficult.  It also doesn't help with decreasing or maintaining weight loss.  Here's my advice. Take one day at a time.  Every little bit or step helps.  Use friends to help motivate you. Even sedentary movement helps.  There may not be a cure for our disease, but it's not fatal.  We all have different issues to deal with.  Heart disease and cancer are the two highest causes of death in MS and yes in the general public. See we are just like everyone else.  Whether it's fatigue, numbness, depression, bladder issues, or obesity, my biggest mantras are: one day at a time, one step at a time, and everything in moderation.  

I may not have given you five things in the news this month but hopefully this note has helped someone in some little way.  Try and take what's hopefully going to be good weather coming soon and get outside and move, even if it's just one step at a time. 

A BIT ABOUT SUSAN...Susan is a registered nurse who worked in high risk obstetrics at Brigham and Women's for twenty years. She is also a certified nurse paralegal. She is currently not practicing as she is disabled because of MS.  She was diagnosed 8 years ago with RRMS and has a daughter who also has MS.

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