This week, I am riveted by Sandra's story of traveling to California with her grown son, where they have both been tested and treated for CCSVI. As a parent, I completely empathesize with the turmoil of her emotions. So many of you have expressed your sympathy, as some of you have children with MS, and almost all of us worry about the genetic connection.
So, I'm thinking about how we can help our kids.
Jeff and I have a 16 year old son, and although he hasn't shown obvious signs of MS, I've had those freak out worry moments. A numbness of his upper lip (turned out to be nerve compression from a hard week of trumpet practice) Exercise intolerence at the gym and on the track (turned out to be dehydration) and general teenage moodiness, which can mimic MS depression.
When our boy was five years old, his teachers suggested we have him tested for ADHD. He was disruptive in class, wiggly, impatient, and a "handful". I chalked this up to being typical boy energy and no big deal, but went ahead and took him to a recommended neuropsychologist, mostly to assuage the teacher. The doctor put him thru a battery of tests for several sessions. He liked these sessions, because the doctor was young and pretty, and he got to play games on the computer, do puzzles, and talk to her. Her diagnosis of our boy was high IQ and severe ADHD. She warned that if he didn't start Ritalin, he would never have success in his scholastic career, and be doomed to underacheivement and depression.
Well, I didn't bite. Not even after his GP said the same thing. I read books and researched and learned about fatty acid deficiencies. I got him kid-sized, strawberry flavored omega 3 supplements, changed his diet, and within a month, he was a different kid. Focused and happy. Still a handful, but a bit more manageable. Now, I take no credit for this---my Mom raised me this way. When I was a kid, I had horrible migraines with aura and vomiting. My Mom read Prevention magazine. She was an odd mix of liberal hippy and conservative Christian (I'm like her in that way, too) She breast fed all her kids, in an era when formula was considered more correct. She took me to the health food store---dark wood paneling and spider plants in macramé hangers---and bought me kelp supplements. And they helped eleviate my migraines!
http://www.brighthub.com/health/alternative-medicine/articles/43003.aspx
Fast forward to Jeff's diagnosis...we were so overwhelmed with all the information about his new disease, I went to my "comfort" zone. Like my own mother had taught me-- diet and nutrition. And I found Dr. Swank's diet and research on line. Within months, our family was eating in a new way. Gone were the red meat, fatty cheeses, heavy sauces. I didn't realize it at the time, but Jeff felt that in some way I was blaming him for getting MS. Out to dinner for our anniversary, only three months after his diagnosis, he ordered a steak. He caught my reaction out of the corner of his eye, and when the waitress left the table, he lit in to me. "I didn't give myself MS by eating steak! Or working hard...or being who I am! Don't blame me for this." And I saw how hurt he was. He thought I was judging him for getting sick...and of, course I wasn't. I was trying to help him, but it came off as judgement.
I share this story, because I believe we can help our kids to live better, healthier lives, but I don't want this to come off as judgement. Because it's not. It comes from a place of genuine concern. And hope.
Families no longer eat at home. We don't cook together or sit down for dinner together. We let restaurants decide how we should eat. And one of the biggest changes our family made after Jeff's dx is that we cook really good meals, and we eat as a family. And we're all better for it. We were never obese...but we were all high normals on the BMI scale. We love food, and LOVED going out to restaurants. Most of our family memories involve travel and the incredible meals we've shared. An interesting observation in Kuwait is that since Kuwaitis have adopted this western "eating out" mentality, they are the most obese nation in the world, and rates of heart disease, MS, and diabetes are skyrocketing.
http://articles.cnn.com/2010-05-06/world/kuwait.fast.food.obesity_1_kuwaitis-adult-onset-diabetes-food?_s=PM%3AWORLD
My proposal is simple. Let's start in the home, and be good examples for our kids. Let's teach them how to cook for themselves. I have my son help me prep meals and get veggies and salads ready. Jeff is finally learning how to cook, too (after only 26 years of marriage :-) We like to roast chicken and veggies, stir fry, and make omelettes. There's always fresh fruit and unsalted nuts to snack on, and every dinner has a dark green salad. We all take a vitamin D supplement, and we encourage each other in our exercise routines. Our son likes the gym, Jeff likes the elliptical and biking, I like walking the dog and biking. Sometimes, we exercise together and go for a hike or bike ride as a family. We don't smoke, only drink wine on occasion. We are far from perfect, but somehow, the idea of being accountable to each other for good health has brought us all closer. And we hardly ever eat outside the home anymore. Our son seems happier, more content, more confident. I believe that in giving him these tools, he'll feel more in control of his health. Not that this can completely change his genetics, but that it will be another tool in his kit, as he enters adulthood. I like to picture him cooking for his someday/future family. It makes me happy.
I hope our boy doesn't have his Dad's lousy veins. His vision is still good--and Jeff's peripheral vision was gone by age 12. That gives me hope that he may never develop CCSVI. But if he shows any signs, you can bet we'll get him tested and treated. And we will never blame him for his genetics or getting sick. There are some things we can control, and some we can't. And that reminds me of one of my favorite prayers by Reinhold Niebuhr:
God grant me the serenity to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time.
take care,
Joan
EDIT: After reading all your incredible repsonses....
I have a crazy idea...maybe we can gather our favorite "whole food" recipes and share them on a web page, or make an e-book. I know Arlene Hubbard has some terrific recipes, and Jackie (Pink Door Restaurant) and Lorin and Patricia and so many others. We've got a lot of talented members here.
If anyone wants to participate, e-mail me your recipes at joan.beal@ccsvi.org
They should be relatively easy, so that families can cook together, and involve fresh, whole foods that people can get at their local markets, and not take all day to prepare.
Include a little blurb about yourself, your journey with MS/CCSVI and permission to share.
I won't use this as a money-maker, but will figure out a way to host it for free. What fun it would be to make each other's recipes, and to know we are teaching the next generation how to enjoy healthy, home-cooked food.
Send me those recipes, and I'll get going!
joan.beal@ccsvi.org