The Brain/Body Connection

Over the last several years I have done a great deal of work learning about improving the brain/body connection, using exercise and diet to make the most of my walking, balance, coordination, and speech.

I am thirty-six years old and have von Hippel-Lindau disease. I have had brain surgery six times since 1975, and I can still walk, talk, drive and even jog. I do all the listening and learning and experimenting I can. I figure if I close my body and mind to any option, I'm only hurting myself. Let me share with you what I have learned. You might find something useful here for yourself.

Everyone's health situation is different. A diet/exercise routine that's helpful for one person may be of no value to another. That's because we're all different in lots of ways, from tumor location to age to the toxicity of our daily environments, and all this stuff really does have an effect, so you've got to experiment with stuff like exercise and diet.

Do a lot of physical activity. It's boring and it seems stupid, but I've seen what happens to me when I have had to curtail my activities, so I know that exercise is really valuable. In deciding what to include in your activities, experiment.¹ Invent your own exercises that are based on the activities that are hard for you. Also, do some pre-invented stuff that seems to be beneficial to you. Do things that seem beneficial to your whole body -- like jogging -- as well as exercises that seem to work only on a specific part -- like push-ups.

As for the quantity of time per day that you spend doing this stuff, I've found that there's a point of diminishing returns. In other words, everything that you do up to that point is very beneficial, but if you exceed that point and continue to exercise, while you won't hurt yourself in any way, the benefits will lessen until you're kind of wasting your time. For me this point is at three to four hours of exercise per day. I have a feeling, though, that the optimal time per day that you want to devote to physical activities is something that varies a lot from person to person. So if you want to find out what it is for you, guess what you need to do? You have to experiment.

Varying the quantity and quality of the foods I eat have shown me that the stomach definitely has some influence over the way a person makes use of the old brain-body connection. By avoiding junk foods, or doing an herbal toxin-cleansing fast² for up to a week, the improvement afterward can be amazing. It's up to you to determine whether the possible long-term balance/coordination improvement is worth such a radical change in your diet.

The weather seems to have an effect on my ability to move around. Warm and cold don't seem to matter in and of themselves, but sudden temperature changes definitely influence my abilities negatively. If you're smart (which I am not) you'll plan your daily activities with the weather in mind.

Always be aware of ground conditions. Wet, hilly, rocky -- things like that can have an influence on the way that you move around. To optimize your capacities you have to always be aware of conditions where you are and where you're going. You have to look ahead and be ready for what's coming. Hopefully, increased awareness of what the environment is like and how these conditions will affect you will help you, as it does me.

Except for increased awareness, I have not found any absolutes for making the best use of the environment. What works for one person under certain conditions may not work for someone else. So guess what you have to do? That's right -- always experiment.

Recently I began taking shark cartilage³ as an experiment to see if it would keep tumors from forming. I found to my surprise that I could move around better. Walking, balance, coordination -- they all improved. Several people noticed the change and commented. It is still early to say whether the benefits are lasting, but I'm very encouraged. I would love to share experiences with other people who are experimenting with shark cartilage.

Okay, that's what I've learned. What have you learned? If you have any tips for navigating through this world, please tell us about them. Why shouldn't others benefit from your experience?

Shark Warning!  This preparation may be dengerous.  See note below, and Article 3/94

Editor's notes:

1. Check with your medical team to see if there are any exercises you should avoid because of specific injuries or recent treatments. The physical therapy department can assist you in designing your exercise program.

2. Be sure to check with your doctor before embarking on a highly restrictive diet. Be careful to get enough fluids and basic cell nutrients so that you do not lose muscle mass.

3. Nutritional supplements are not a substitute for, but a possible addition to, regular medical checkups. The book Sharks Don't Get Cancer by I. William Lane (Avery Pub. Group, Garden City Park, NY, 1992) has generated a lot of interest in the press. 

[Editor's note 12/97: Several members experimented with shark cartilage for over a year.  All of them experienced additional tumor growth, some experienced aggressive new tumor growth.  For that reason we recommend that you NOT use shark cartilage.  It's expensive, and it seems to have either no effect or it may be actively counter-productive.   If you experiment with any regimen or supplement, keep careful records and be sure to have scans showing "before" and "after" so that you can determine whether your experiment is working or not.  So far, members have reported help from a lower-protein diet mostly based on vegetables, with some tofu or miso soup occasionally, and a few people have reported some help from Essiac tea, providing some alleviation of bloating and other gastric symptoms from pancreatic cysts.  Whatever you do, don't stop going for your scans on a regular basis.]