The National Multiple Sclerosis Society has not traditionally been a fan of the MS Recovery Diet. But yesterday I spoke at an MS symposium for the NMSS local eastern upstate NY chapter. I think it went well and perhaps about a third of the afternoon attendees came to one of my 2 workshop presentations. The participants wanted to learn what they could about why and how the diet works. In addition, the workshop organizer bought copies of the book that she raffled off in various ways throughout the day.
Apparently, she had a woman in one of her support groups who got out of her wheelchair using the diet. In this way, new walking ambassadors of hope are born and the word spreads. Perhaps your local NMSS chapter can learn about the diet from your example as well. It seemed that the general audience no longer thinks it is such a radical concept that MS can be stopped and symptoms reversed through the use of diet. Now I know that the people I spoke to may or may not undertake the lifestyle changes required. Not everyone has the courage, patience and persistence to adjust their attitude (it IS possible to recover from MS?), their diet and to begin exercising as an adjunct to healing.
As to exercising, I read an online article about a recent study out of Ohio State University that said people who are physically fit have smaller lesions, fewer lesions, sharper cognitive function and recover faster from exacerbation than people who do not exercise. This was measured in both the white matter (myelinated portions of the brain) and the gray matter (for instance, the cerebellum, seat of balance and coordination.)
So another reminder; even if you are confined to a wheelchair or to bed, there are gentle exercises (even visualization works) that can help to stimulate your brain cells to begin the job of healing and reroute messages to your muscles. Given the right attitude, diet and exercise, the body WANTS to heal and will reward you with gradual recovery on your path to health. Try to get a script from your doctor to see a rehabilitative Physical Therapist who can help you to identify exactly which muscles are compromised, which are compensating, and how to effect daily functional movements with the least stress and the most safety. You will learn exercises to do at home to both strengthen and awaken lost movements as you change throughout your recovery. Or join a movement class in any style that appeals to you. Enjoy the return of your bodily sensations and make them work for you.
There are often themes that emerge in emails that we receive from people all over the world. First, people ask if our book has been translated from English into French, Italian, German, Dutch, Russian or Arabic. The answer is no, our publishers do not believe they will ever make enough money to justify this happening.
Our suggestion is to go to our website and download the FAQ’s (and all other blogs that contain pertinent material) and find someone who reads enough English to translate the information for them one question at a time. There is a lot of good data and instruction in those 17 questions and answers. I just reread them for a lecture I will be giving in November to the 3rd annual symposium for the National MS Society Upstate NY Chapter for the Eastern Region of New York State and found them to be quite comprehensive.
Second, many people last month were writing with questions and concerns on behalf of a friend or family member with MS that they wished to support. The writers were upset or concerned because the person in question was not following the diet or was discouraged after getting an allergy test and hearing they were not allergic to many of the foods we suggest they (at least initially) avoid. We have repeatedly said that these tests are not the final arbiter of trigger foods. Each person’s own body must have the final say as to how sensitive it is to ALL of the foods they consume.
Following a diet protocol is not for everyone. It requires a particular sort of patience and determination that some folks may not possess. Sometimes people with MS become very bitter and cynical. That may or may not be part of the depressive biological profile of MS but it is not uncommon. All you can do is to suggest, support, care and love the person no matter what path they choose. It is their life and not yours. Helplessness is not a pleasant experience but it is only within our power to change our own life, not that of another person. MS is a teacher for everyone whose life it touches. I salute those writers for their deep caring and concern.
I salute those of you who struggle with the diet and still persevere with hope and determination.
Beginning the diet means there are lots of new food ideas to become aware of- both foods to avoid and new foods and supplements to include. A good way to keep track of all this information is to start a food diary. Write down exactly what you are eating before, during and in between every meal. (This includes any and all medications.) Write down your reactions after each item that you ingest. These can be subtle changes; a slight headache, gaseous or bloated feelings, increased fatigue, mental fog, etc. There may also be larger reactions like limping, pain, or exhaustion. A food diary will help you to identify what does and does not work for you. White potatoes may be fine for me, but cause weakness for you. Oatmeal may be bad for him but OK for her. We are all different chemical vessels and your personal trigger foods may be unique.
If you have been on the diet for a while and have started experimenting with adding foods back in again, then doing a food diary becomes important to be sure you are aware of what does and does not work for you now. Some people may have very little feedback from their own body symptoms even over the course of a year and others may have immediate and clear reactions. A food diary will help you to zero in on and further fine-tune your food choices. These choices may also have changed over time.
If you have been on the diet for a year or more, then keeping a food diary will help you to become newly aware of ‘compliance fatigue.’ This is when you have felt better for a while and think a little bit of cheating now and then will do you no harm. And you may be right. Some people can eat a food they know is not good for them and suffer only a few hours of complaint as a result. Others of us cheat and set ourselves back for an entire week or longer. If you start a food diary now you will know exactly which foods you still need to avoid so that unpleasant experience does not recur. Adding foods back into your diet over time is a necessary part of self-discovery. Only then can you know for sure how your personal food choices are working for you.
It is not easy to begin any diet protocol. You may already have tried diets in the past that may have been unsuccessful in the long run. Losing weight is often recommended for health reasons but diets are more usually undertaken in order to look better. Feeling better is a side benefit that is appreciated but not usually the primary motivation for undertaking a life style change. Diets have a bad rap, and because many of us have history with both dieting and food issues in general (we eat too much, too little, use food to ward off loneliness, sorrow, stress, etc.), undertaking the MS Recovery Diet to ward off the progress of MS can be daunting at first.
The diet is not endorsed by the medical profession (yet) and our friends and family think it might be crazy to believe that such a serious medical condition can be alleviated or even reversed by simply changing what you eat. Yet we can attest to the fact that thousands of people all around the world are willing to experiment with taking their health into their own hands by giving the diet a serious try. Almost everyone who does so, reports success of one kind or another- from total remission of all symptoms, to improvements with many of their most troublesome issues. This kind of grounded hope can help trump a natural aversion to dieting.
We are the first to admit that we do not know why there is such a variable response to the diet protocol. Yet it has given support and freedom to so many. Why not you? There are many questions you may have in the beginning so please avail yourself of the entire website by using the Search function in the menu bar on the left side of the homepage. Type in a key word or phrase and most likely you will find your questions addressed by either Ann or myself from past blogs, or by other explorers from the many forum entries over the years.
Do I really have to give up my glass of wine/cup of coffee? Is goat dairy different on the diet from cow dairy? Are organic eggs OK? Is carob a legume? These and many other answers await you. Ultimately it is your own body that will provide the answers for you over time. But in the beginning, we all need the support of others to begin avoiding our ‘favorite’ foods and way of eating in order to learn to eat new foods. Is the MS Recovery Diet for real? Yes, it is. That much is certain. We wish you good luck on your journey.
Twice recently people with whom we have been corresponding went to Europe to have stents put into their veins with the idea that CCSVI was a contributing cause of MS. When they first returned they proudly announced that they were better, then after about a month, they each have written to us that they are worst than ever. Now, I am no expert on CCSVI or the particulars of the procedure or who is best served by the operation, this is just a cautionary note. I know that there are also many people who have apparently been helped as well.
But, the success or failure of the procedure is not what I want discuss, rather the placebo effect which seems to be so srong in MS treatments. The placebo effect is the resulting improvement in a person no matter what the medication given, if they believe it to be effective. There have been many research studies where the subjects are given plain sugar pills, with positive results in improvement in healing or curing. I believe the statistic is the placebo effect accounts for something over 20% of improvement. It is clearly a matter of mind over body or that our minds and attitudes can influence our body's condition. It shows the power of belief and a positive attitude.
Now we know that the diet works for most people, and it holds over time. I just realized that I am now at 13 years on the diet with no relapses. But, if you can have an added boost by using the power of the placebo effect, it may make recovery a little faster.
The other matter I wish to discuss is to again warn all the people on the diet not to get too thin or weak. It is important to maintain a healthy body weight and to stay strond. The diet works on the prinicipe that we weaken the disease by not eating the foods that cause symptoms and at the same time strengthen our bodies with good, health enhancing foods. The diet is not a cure, but a treatment which can so weaken the disease that there are no symptoms, even to the point that the person can go back to eating everything, carefully. But the potential for MS is there. At the same time the diet weakens the disease, the body needs maximum health. Witness how sickness, fatigue and stress--when the body is weaker--can cause symptoms. So, eat to keep a good weight and strength.