MS & Diet

A common question MS’ers often ask is, “Is there an MS Diet?” Some say yes. Some say no. The diversity of recommendations and the lack of a coherent message about diet and MS can leave those with MS uncertain andconfused.

Especially recently, different diets have been proposed as treatments, or even cures, for symptoms of MS, or for the progression of the disease. Most of the evidence for diets that are touted as helping people with MS have been based on anecdotal evidence, rather than controlled experiments. And those that have been evaluated more rigorously have produced mixed results. Claims for dietary “treatments” that are based on personal accounts are subject to all of the things that make anecdotes very weak evidence. People are susceptible to placebo effects, spontaneous remissions, and hucksterism, to name a few.

Ironically, the two most popular “MS diets” are almost mirror opposites.

There is the Swank Diet, which is a low-fat diet developed by Dr. Roy Swank more than 30 years ago. No dairy, wheat glutens, legumes, or saturated fat from animal sources are allowed. It stresses fish and fish oils. Dr. Swank reported that 95% of patients who adopted this very low-fat diet following an early diagnosis of MS had a remarkably good chance of remaining free from further disability. The problem is other researchers have not duplicated these results, and there is no generally accepted proof that the Swank diet can control MS progression. There is anecdotal evidence from people with MS that this diet makes them feel better.

Then there is the Wahl’s Protocol, which is modeled after the  Paleo diet. Dr. Terry Wahls was diagnosed with MS in 2000. After seven years of disease progression, she altered her diet to include 3 cups daily of each green leaves, sulfur-rich vegetables, and brightly colored vegetables, fruits, or berries. For protein and animal fat, the diet calls for wild fish for animal-based omega-3s, grass-fed meat, and organ meats, also for vitamin content. The diet eliminates processed foods, grains, and starches. Dr. Wahls has claimed that this diet not only stopped but reversed her disability from MS.

I side with Dr. Randall T. Schapiro, the director of the Schapiro Center for Multiple Sclerosis in Minneapolis who says “diets have been used for MS from time immemorial. If they worked, we wouldn’t be still talking about them.”

Although there's no magical “MS diet,” what and how you eat can make a difference. MS specialists suggest that a low-fat, high-fiber diet similar to the one recommended by the American Cancer Society and the American Heart Association can benefit people with MS. A good diet can improve your energy level and overall health, as well as your bladder and bowel function.

In general, the same basic diet rules that apply to everyone also apply to people living with MS:

·         Eat regular meals - eat a healthy, consistent diet. Make sure your diet includes lots of fruits and vegetables, lean proteins, and whole grains.

·         Eat a balanced diet – limit sugar and processed foods, increase fruits and vegetables, choose lean sources of protein, choose healthy fats, and consume adequate fiber and fluids.

·         Avoid fad diets - There’s no special food that can cure MS. Fad diets focus on large amounts of certain nutrients and leave others out completely. It’s better to follow a balanced diet than to follow a fad.

Of course, eating healthy will make you feel better. But diet shouldn’t be your only treatment. And always check with your doctor before making significant changes.

Guides from the NMSS:

Wellness for People with MS

Is there an MS Diet?

MS and Pushing Yourself

Recently, I started doing wheelchair yoga. It felt good to move my upper body in a controlled and meditative way. Last week, I decided to try a YouTube video called, “Energized Seated Yoga.” Unfortunately, I pushed myself too far and while folding myself over, I fell out of my wheelchair. I ended up needing four stitches and currently have two black eyes. Thankfully that was all. It could’ve been much worse. The whole incident made me think.

I have to come to terms with the fact that it’s okay to take it slowly and be careful. It’s not only okay but it’s necessary. I have to respect my MS. All too often, we think we “need” to push ourselves, be it doing housework, studying, or exercise. But what I’ve learned is that pushing myself too far today depletes the energy I need tomorrow. Once again, Spoon Theory at work.

As someone with MS, I also have to pay careful attention to how the environment affects my body. One peculiar symptom seen in people with MS is our sensitivity to heat. Many of us experience a temporary exacerbation of our symptoms when we get too warm. We can be sensitive to even a slight increase in our core body temperature that may be due to physical exercise or a warmer environment.

Thankfully this ‘pseudo-exacerbation’ of the symptoms does not cause any nerve damage. With time, we may figure out our intolerance to heat and be as prepared as we can be.

Unfortunately, you always have to be on your toes with MS. Be aware of your environment. Don’t let yourself get distracted or you could end up with four stitches and two black eyes.

It's Not Your Fault

Multiple Sclerosis is real. Its symptoms are not imagined. It’s not caused by a person’s lifestyle or by an unhealthy diet. There isn’t a specific cause for MS and to this day there is still no known cure.

Developing an illness like MS is not our fault. Nobody knows why we got it or where it will lead. Yet I often feel that if I had done something differently or tried harder, the outcome might have been different.

If you’re me, you hear these things all the time:

“She cut out gluten and started doing yoga and she does not have MS anymore.”

“Stay away from MS drugs and Western medicine.”

“Go vegan.”

“Go Paleo.”

“I know someone with MS who runs marathons!”

I was diagnosed in 2011 and have already progressed to Secondary Progressive MS in less than five years. Should I have taken up yoga and gone vegan the second I was diagnosed? Maybe. But I was in a “newly diagnosed” fog and was just trying to get a grip on my new life. Besides, I’d been misdiagnosed for 10 years. I had spent those years trying to figure out what was wrong with me. I didn’t know what I had let alone how to fix it.

I think a healthy lifestyle and a positive attitude is important; Eat healthy, don’t smoke, and everything in moderation. I wouldn’t abandon conventional MS treatment for alternative therapies, even if they're natural remedies. Blend complementary and alternative medicine, or “CAM therapies” with traditional medications. Find a doctor you like. Be your own advocate.

A friend of mine once said, MS is a neurological disease not a muscular one. I have to remind myself that no amount of exercise will fix me. It is possible to do all the ‘right’ things, exercise, eat properly, avoid stress, and so on, and have a recurrence of the disease. It is also perfectly possible to do all the ‘wrong’ things and not have a recurrence. 

It’s not my fault. There’s nothing I did to get the illness or make it worse. 

MS, Limits, and Loneliness

MS is a tough disease. Not only do you have to deal with medical issues, you have to deal with social ones. Loneliness seems to be one of the most difficult things to deal with concerning MS.

Impacts on my social life come in a variety of forms. I find that MS restricts my ability to interact socially as immobility and fatigue limit my time away from home. I am unable to go to inaccessible homes or restaurants. Unknown situations can cause anxiety therefore keeping me home, in my comfort zone.

Fatigue, the kind brought on by MS, is a disabling condition. Having MS makes movement an activity of its own that requires concentration and effort. People with MS need to be aware of each and every activity required by an outing or event.

Often noted in the MS community is the social stigma surrounding MS due to ignorance, where people do not understand or appreciate the invisible and painful effects of the condition. For me, the effects are more obvious as people can see my wheelchair. For others, visual cues are less obvious, and observers can mistake symptoms for intoxication.

MS affects everyone in different ways, and when fatigue or an attack is happening, life shuts down. While your body is trying to fight its way back to normal, it is difficult to experience loneliness, and all the emotions it comes with.

As you can tell, I get very frustrated with this disease. Not only do I have to take care of myself, I have to be more proactive in creating social activities I can take part in or risk distancing myself from the friends and family I love. I often worry about being too boring. At times like these, I find it is very important to be kind to myself. 

Ready? 1, 2, 3!

Sometimes I think the theme to my life with MS is “Ready? 1, 2, 3!” This is what I say to myself to get me ready to transfer on my own. I also say this to my husband or other people helping me out so we are on the same page and ready to move. Go on 3.

One of the hardest things about MS is dealing with the loss of independence. Unfortunately, I know what dependence feels like. I relate to the discomfort of relying on others. I find myself feeling guilty every time I have to ask for help.

But maintaining control and independence in everyday life doesn’t necessarily mean doing everything the same way you did it before. By allowing yourself to do things differently and using assistive devices – there are an array of energy- and labor-saving tools and devices that allow you to stay active and productive - can save you energy  Physical and Occupational Therapists can help you modify your environment to optimize control and independence. I have grab bars next to heightened toilets, a bed rail, have reacher/gabbers placed around the house, use a shower transfer bench, and use a riser recliner.

I have to remind myself that it’s not my fault. MS progresses because that is the natural course of the disease. Do not mistake needing help for weakness, or independence for strength. 

Accessible?

Sometimes my MS seems to be a continuous series of things I can't do anymore and places I can’t go anymore.

The Americans with Disabilities Act (ADA) was signed into law on July 26, 1990, by President George H.W. Bush. The ADA prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in American life.

It’s been over 25 years since the ADA was signed into law and unfortunately progress has stalled. I’ve seen things that confirm this for me. When a place, particularly a business, claims to be wheelchair accessible, a lot of times it really isn’t – it is only accessible to the minimal required standards. They think that just because there isn’t a step to enter the establishment it is accessible. False!  The doorway may be too narrow to accommodate my power wheelchair, the door may be too heavy or awkward for me to open on my own or there isn’t an automatic door. Public restrooms often don’t get it right either.  Many times there isn’t a support bar next to the toilet that is an ADA regulated height.

The thing is: ADA is not an accessibility guideline, it is a law. Using your accessible bathroom for extra storage doesn’t cut it. At an accessibility conference in Melbourne, Australia in March of last year, the main speaker (who was in a wheelchair) had to be carried on stage because there weren’t any ramps. At an accessibility conference, the stage was not accessible. You can read more about this story here.

Over the Christmas holiday, my husband and I planned to take a short trip to Monterey, California. We reserved an ADA accessible room at a fancy hotel and confirmed they had the accessible features most important to me: a support bar next to a heightened toilet. After we checked in, we went to our room. There was a support bar next to the toilet but the bathroom was very tight; the huge marble sink was perpendicular to the toilet making it impossible for me to line up my power wheelchair for a transfer. Before heading to the main desk, we checked out the restrooms in the lobby on the Bay side of the hotel. These were not configured well for my use. We then went to the main desk and spoke with the manager. The only thing he could do was transfer us to a new room on the inland side that was not accessible but had and accessible bathrooms in the lobby. So every time I needed to use the restroom I had to go to the lobby. This would have to do. We ended up cutting our vacation short because of this inconvenience. Sadly, I was not that surprised, merely disappointed.

People need to do more to understand what accessibility means for all. And to live up to the law that guarantees that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life.

PT OT: Important letters in MS

My definition of successfully coping with MS is to live a life as close to normal as possible.  Physical and Occupational Therapists help make this possible.

I am a strong proponent of PTs and OTs. After I broke my ankle, I saw a PT to get me walking again. As my ankle healed and I started walking again, we both noticed something was off with my gait. My PT thought it might be neurological and suggested an MRI. I’ll always be thankful to him – he got me on the road to diagnosis.

In early 2013, I had an infection that led to an MS exacerbation that landed me in the hospital. After four days, I was transferred to in-patient rehab for four more days. Those days were spent with PTs and OTs going over various issues: strength, balance, endurance, and cognitive changes. My therapists helped me create a program for my ability and goals. I learned how to conserve energy and work around my limitations,  get the most from exercise, and perform daily activities.

After I came home, I was advised to sign up for in-home health – where the therapists come to me. This proved to be highly beneficial. I didn’t need to travel and the therapists could see my home environment and help me to adjust to being back home.

As my MS progresses, I often request in-home health appointments so my PT can reassess where I am and help me with adjustments and adaptations. PTs and OTs help you find ways to maintain your independence while also caring for yourself without risking greater damage to your body.