Things to know for those new to MS

5. You are not going to die a slow, or a fast, painful death. You may well outlive your entire family--it is neither uncommon nor unlikely. MS is one of the most misunderstood diseases in the world, even by doctors. Folks generally refer to it as a condition wherein a person has a compromised immune system. In fact, MS is a condition in which the immune system is _hyperactive_ (so much so it consumes itself under sub-optimal conditions). I am 36. I have not gotten a cold, flu, sniffles, anything since I was in my mid teens. Cuts and scratches? Healed overnight. One of the keys to living well with MS is learning how you can balance this "healthy" nature of MS with the inflammatory and demyelinating episodes (which we now know can in fact be reversed, through the body's own wisdom and practices stemming from numerous recent therapeutic studies.) [PS: Don't be afraid of IV steroids; for a person with MS, their occasional use can be like vitamin B-12 shots for most folks, revitalizing, grounding, confidence inducing.]

4. Start hard work now on spiritual, emotional, psychological, and intellectual cleansing. There is every reason in the world to believe that MS, along with any number of other very serious illnesses, in part stems from "dirty stuff" in one's mind and heart, bad attitudes, unacknowledged feelings of hopelessness, etc. Be extremely careful not to blame yourself. My point is that very few of us ever really go deep inside ourselves to look for what's really there, what we really love and hate, what's really good for us and what's not, what we need to let go of and we should cling to. One can do great, overwhelmingly important work by way of meditation (find a teacher or accomplished meditator to guide you into it--indescribably great things can come from determined, regular meditation...make it part of daily life) and also self-hypnosis. If you were to really practice at theses two areas, make them rituals which define your life, you will find much of the uphill battle of MS you could otherwise succumb to will "re-imagine" itself into a question: how do I want to live and live well considering these cards I've been dealt?

3. Achieve the physical fitness of an olympic athlete. Practice walking, every day; try to walk a little farther every day. Most of what we know about MS is simply what we've observed. Only a few decades ago a diagnosis of MS was finally arrived at by putting a patient in a hot bath--if their symptoms worsened, the MS diagnosis was conclusive. These days, we are not much farther along. Sure there are MRIs and other brain-imaging technologies, but they really don't tell anything for sure. For example, a person could be in a horrible clinical state, clearly MS, but have MRI scans that are perfectly normal; and vice versa. There are however many things about MS which have been observed over the years which are ubiquitous. Sensitivity to one's body-core temperature rising is one of the most common symptoms (likely, this has to do with an inhibition of the body's sweat processes). The problem here is that it really doesn't matter all that much how strong you are--when you reach that turning point of body-core temperature, your muscles may very well just not function right, and not for weakness, for neurological reasons. Still, if one _does_ have very strong muscles, this core-temperature limiting factor, and other ones, will be minimized as an obstacle. There are countless other "most common" symptoms, including dizziness, balance problems, troubled gait, ocular dysfunction, sexual disfunction, incontinence and disturbed elimination, joint pain, troubled sleep, numbness in places from head to toe, and on and on, along with serious mental, psychological, and emotional obstacles, non-linear stress episodes (MS's bread and butter you might say...you don't want to feed it), irritability (especially having just awoken, being hungry, or being tired, fatigue being another MS hallmark), clinical anxiety and depression, you name it. When one is first diagnosed, and one sees a list like that, one is inclined to think, "My god. My life is over. My whole body is broken." Clean your mind, eat right (see below), work out, meditate, do yoga, attempt to be serene in everything you do, make real peace with your soul. Ask yourself what you've been dying to do, really, your whole life, whittle away at the stuff that you only think is part of you, get to the heart of you (the most elusive place there is), no matter where it may be found, and you will find peace.

2. Be prepared for the unexpected when it comes to love, understanding, and sympathy from your close friends and family. Everyone is afraid of illness. Those who love you will go through a time of deep sorrow and remorse about your condition. They may be extremely uncomfortable watching your state close up (especially when it comes to the emotional and psychological difficulties). Married people or those in committed relationships may find their significant other starts making all the noises of wanting out now. It can be one of the hardest things in life to fall in love with someone, come to expect things of them and a relationship, and then have almost every aspect of that love-world called into question. Wives may resent their husbands for no longer being the strong, capable men they once were; husbands may resent wives for no longer being the care-giving, sweet souls they once were. This is a great time to do one's own inventory of friends and family: you will be able to discern more clearly than ever those who are really there with you, through thick and thin. Do not be quick to give up on anyone. An MS diagnosis is hard as hell for all concerned. Give your loved ones plenty of time to come to terms with your new world. Be aware, though, that maintaining any antagonistic relationships, with spouses, friends, bosses, will only harm your well-being. Through introspection, as described above, you will become clearer on whom and what you must surround yourself with. You and those around you must come to understand that MS is almost invisible--in some cases there are very visible indicators and signs, but in most cases, and with most aspects of the disease, there is just no way for those without MS to understand what living with it is like. Even on a good day, the world can seem like a haze and all your interactions with it like fumblings in an uncomfortable dream state.

1. Eat a vegan diet. Update as of June 2007: I started being an omnivore again. The reasons have entirely to do with getting enough calories; my body simply couldn't get enough with vegan food. The Dalai Lama is in the same position--as much as he wants to be a vegetarian, his health was suffering greatly on a vegetarian diet. His doctors ordered him to start eating animal products again. Likewise, I woke up and realized I've spent much of the last 15 years starving at all hours; I feel like a whole person now that I'm getting enough nutrients. While I was a vegan, I also saw numerous signs of vitamin and mineral deficiency; those are all gone now. Ethically and in terms of long-term health, I would be a vegan if I could; however, there is no question that those with MS who follow a vegan diet have much less severe long-term disability. The clincher for me is that, in the short term, I want to live a good life. Getting enough calories and vitamins and minerals is essential to that good life.

[The fact that this notion couldn't be less popular with the most powerful industries in the world, meat and dairy, is the main reason veganism is not endorsed, in the mainstream, wholeheartedly for MS. Also, most doctors are themselves averse, in principle, to anything as supposedly radical as veganism (history emphatically shows that veganism is anything but radical); additionally, a well-meaning doctor will try to lessen the burden of coming to terms with disease, and not advocating for radical diet changes can be conducive to easing that burden. None of this "qualification" lessens the critical importance of a vegan diet for those with MS.] One should consume no animal products of any kind, no milk, no cheese, no butter, no eggs, no meat, no fish (one can get sea micro-nutrients from many non-animal sources), no sprinkling of parmesan, no dollop of sour cream. Dr. Roy Swank began showing in 1950s, through exhaustive clinical and historical research, that those with MS who followed a very un-American, very low-fat diet, those in his care, those he'd seen as statistics in historical data, fared much, much better than those who don't make the step. As one example, he came across data that Holland, which had had the highest rates of MS in the world prior to WWII, had its MS rates drop precipitously while the Nazis occupied. Why? The Dutch no longer had access to lots of of high-saturated-fat animal foods. One Dr. Soll went on to confirm and embolden all that Swank had done. Soll showed that when high concentrations of saturated (animal) fats are consumed, one of the body's main reactions is to produce histamines (homeostasis the goal); these histamines encourage T-cells to step up demyelination and/or imitate it themselves. (On this note, it is worth pointing out that anything that produces an allergic reaction in a given person (ie, involving histamines) should be suspect.) Every person with MS I've ever met who's in a wheelchair pays no attention to the diet facts. Of course, there's no absolute guarantee, but on the continuum of what a person with MS has control over which will positively impact their well being, the vegan factor is the simplest and surest thing. Now, if one has no familiarity with veganism at all, this final prospect can be daunting, to say the very least. One must come to understand that, in fact, vegan diets have been the most common throughout the history of the world, and more importantly, there are many _ancient_ and fantastically tasty cuisines which are vegan by nature--South Indian and Chinese Buddhist, for example. In addition, these days, one can easily find truly outstanding substitutes for every animal-product in common use. Yes, you can make great pastries with non-hydrogenated margarine. Yes, you can make top-notch meat-analogue meals and won't miss the real meat (you'll be glad to be missing the intestines, beaks, hoofs, liver, and all that other fun stuff). There are countless excellent resources, in book form and online, for creating a totally enjoyable and fulfilling vegan lifestyle for yourself.