For those of you who don’t’ already know, I have the following set of health challenges: born with mild cerebral palsy, which affects the right side of my body. Mild spasticity, less muscle development on that side, right leg slightly shorter (1/4 of an inch) than left, problems with balance, coordination, etc., which I have learned to compensate for rather beautifully. Then diagnosed with MS 16 plus years ago, which affected that all important compensatory left side, and altered the right side some, too. It also affects my cognitive functioning, so I don’t teach at university I like I once did. I never really experienced relapsing remitting phase in a very noticeable way, by the time I was given a diagnosis of MS, it was pretty much secondary progressive. This way of eating has altered the sharp downward progression that was gathering more and more force about 12 years in. I did not know who Dr. McDougall was at the time I began eating this way, but since I had always used lifestyle changes rather than meds, I asked myself “Have I really done everything I can do before I say okay, time for the wheelchair?”
After having heard about the Swank Diet in passing many years ago but never having had it explained to me except in general terms like “it’s a low fat diet and you eat a lot of chicken and fish” which, I didn’t particularly want to do, and not realizing there was a book I could read, at this point I could go to the internet (Yep, that’s how many years passed!) and just look it up. There I began to understand what low fat actually means.
I read The Multiple Sclerosis Diet Book by Dr. Swank and determined that I wanted to do it vegan. Though it limits and measures small amounts of oil, I quickly decided my fat intake would be better spent by eating small amounts of ground flax and a few walnuts instead of wasting fat grams on oil. So I typed in “fat free vegan reicpes” and found Susan Voisin’s blog “Fat Free Vegan Kitchen.” That will be 5 years ago this coming February. There I learned to cook without oil, and to love it. I made and commented on so many recipes I became friends with Susan. We got to meet last summer when she came to my corner of the country. Susan’s web site is where I first heard of Dr. McDougall. And there were references to him on the Swank Discussion Board here and there. I finally figured out they were the same Dr. McDougall and he had his own site!
I am not much of a numbers person. My story is anecdotal, since at the time I was diagnosed, spinal fluid taps and follow up MRI’s were not required, and I quickly realized the medical establishment has little to nothing to offer those with MS. I have a kind doctor who supports all my “alternative” measures, though he doesn’t pay a lot of detailed attention to them. Hopefully my slow motion miracles will inspire others to strike out on their own with this way of eating.
The effect of cutting out oil and saturated fat was immediate in the sense that I recognized I had been dealing with feeling as if something was eating away at me all the time, and that just stopped. Like a fever breaking. Within two weeks I knew I was no longer getting “worse.” I just knew. Since then, things have improved slowly and steadily. The improvement comes in myriad ways I hope to describe in little bits and pieces on here, as time goes on. A general way to describe it is that the form of inflammation and pain gets softened and continues to soften over time. It takes longer to get a “break point” where balance, coordination, or other functions just “go to sleep,” and a shorter time for bounce back if my nervous system does go into what I call “52 pick-up” mode. Before I started this way of eating, I had lost that bounce back.
So my slow motion miracle is that instead of slowly progressing, plateauing and then sharply progressing, I am NOT progressing and am slowly and steadily seeing improvements. I have reversed the direction of my illness. People can’t believe how great I look. Sometimes they don’t even recognize me. Plus, they see me out more. Whereas before I would struggle to walk a quarter mile, now I walk at least mile a day at a time, and then in addition some days walk the quarter mile to the grocery with my market cart. I have a wonderful service dog who keeps tabs on me, helping me with gait and proprioception and bracing if I get a little disoriented coming up from a bend. I am able to walk more naturally and more quickly with him than with the walking stick, which my doctor has happily observed.
Other side benefits: I instantly lost the little extra weight I had—that 5-15 pound range “above normal” is gone. Over time I’ve lost even more, without even trying,as I refine my diet for other reasons. . I can fit into size 6 and even size 4 pants comfortably. Never in my wildest dreams did I think I would be in anything smaller than a 7-8, and without even trying!
The first year I did what I call a science experiment. I wondered if all the damage was due to the saturated fat alone, and wanted to see what would happen if I ate wheat products again (I had been tested as intolerant of it and rye). So I began eating some whole wheat pasta, Ezekiel bread, and baking fat free with whole wheat flour products, rye crackers, rye bread now and then. After about 9 months of that, I decided I really needed to avoid wheat and rye to improve my digestion and symptoms associated with that. It helped me a lot to return to that practice. That has since broadened out to all gluten. Perhaps menopause increased those sensitivities for me.
The second year of doing this I had a bad fall on a hot night. I lost consciousness while coming up from a simple yoga stretch and hit the corner of my masonry stove in the middle of my back. The pain reaction I had made me seriously consider something I had suspected for a while: that with all the falls I’d taken over my lifetime, I had developed the complication of fibromyalgia. I had read that falls can bring this on. That turns out to be true, so the next couple of years brought more “science experiments” to help reduce the effects of that condition.
Now before you start saying to yourself “oh, how terrible,” consider that I would not have been able to sort these things out at all before switching to this way of eating. But this lifestyle and diet change gave me all the ability to feel good enough to start distinguishing what was what, and what foods helped and what foods didn’t.
I cut out sugar completely, even the small amounts I was using to bake. Eventually I cut out baking, except for very special occasions when others are around to eat most of it. I don’t eat products made with flour, to speak of. I also gave up soy, even small amounts of the “good kind.” At about the same time I was coming to his conclusion about soy, I ran across a McDougall minute about fibromyalgia on the intenet that said to avoid gluten and refined flour products, oh, and at the very end, Dr. McD said, “oh, and no soy.” He didn’t say why, but I figured it was a sign.
These adjustments have made an immense improvement in the fibro pain response, and thus my quality of life. I love to cook, so still find ways to have good treats with whole foods. I hope to share some of those off beat things here.
Another side benefit: I had severe neuralgia and rosacea when I began this way of eating. That is all but gone. The rosacea flares up in response to heat and dust, but nothing like it once did. I met a nurse the other day who remarked on how healthy I looked, particularly my skin. She didn’t even know. So I went from being in pain while chewing, even smiling, my skin feeling like a peeled grape, to the miracle of being able to eat and chew and smile and laugh without also wincing in pain or guarding against the inflammation that would be triggered by those simple and essential movements.
I also had very severe issues with body temperature regulation. I was unable to cool down, and so would get very very hot and red, pulse as if on fire, then shake, teeth chattering, as I cooled off. This whole experience could last over an hour. I would have to lay down through it and after I would be exhausted, and have to sleep. That’s gone, too.
These and many other things I call my “little victories and epiphanies.” Is everything perfect? No. But I continue to celebrate the miracle that at a time in my life when I’m getting older, instead of sinking into the oblivion of profound MS progression, I am, as the old commercial used to say, “getting better.”
I’ll post some of my little victories over the past five years to encourage others with MS and/or fibro or other autoimmune issues no thing is too small to celebrate. It ALL counts.
There’s so much to say I have to just start in the middle. Please read, ask questions, and let me know what you’d like to hear about.
You can live and live well on this diet, even if your MS has progressed, even if you start over a decade after you’ve been diagnosed. Even if you have other serious complications. Even if they are congenital.