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Wednesday, February 23, 2011

New Developments/Eating Healthy

Firstly, Some good friends from my ALS group lost their relatives to ALS recently.  S. and D.  lost their brother who lived in New England.  Their brother was a creative person at a multi-national toy company, and had a six-year-old son, and three-year-old twin boys, who were born just after he was diagnosed.  This family was so devoted to this young father that, even though the siblings live in New York City and their parents in Duchess County, at least one member of the family went to New England every weekend to see him and his family.

Then maybe two weeks after I heard about this passing, I received the sad news that another friend from my Beth Israel ALS group lost her mom to this disease.  M. was so dedicated to her mom that she went from Manhattan to Brooklyn at least one day every weekend. These two families were held together by their Catholic faith and familial cohesion. It's true that ALS is a family disease, because it affects the whole family.

I am still eating a healthy diet.  For breakfast, I have stopped the Carnation Instant Breakfast [now I think they call it "Breakfast Essentials"], because it is chock full of sugar, despite providing many vitamins and minerals. I now eat a whole-grain type of cold cereal with soy milk.  By the way, people who are vegetarians, or anyone who does not eat meat every day, need another source of vitamin B12.  I found out that soy milk is fortified with B12, whereas almond milk is not.  I stay away from dairy because of lactose intolerance, and what I have learned about the dairy industry and its cruelty to cows, which I won't go into here.  I don't want to shove animal rights down anybody's throat.  You can also get B12 from yogurt, cheese, and other fermented products, like sauerkraut or kim-chi. I don't drink milk, so fortified soy milk is essential for me.  And certain cereals and breads are fortified with B12, as are several products made as meat substitutes for vegetarians.  And, if you are a carnivore, you are getting enough B12.

Which brings me to the next challenge -- Vitamin D3.  Especially for post-menopausal women, but for all human beings, we need Vitamin D3 for strong bones and other organs.  Lately, most of us are not getting vitamin D from the most reliable source, which is the sun.  If you don't live in Sydney, Australia, which has 340 days a year of sunshine, you are probably deficient in vitamin D, unless you  
get 20-30 minutes of sun every day and don't use sunscreen.  Yes, the reason we are not getting enough D from the sun is that we have been so scared of skin cancer -- as we should be -- and use so much sunscreen or sunblock, that we don't get the sun on our skin.  So we need to take it in supplements or get it in fortified foods.  The importance of Vitamin D is that it works with calcium to keep our bones strong.  It's not enough to get the calcium alone.  And for women, it is so important to prevent osteoporosis.  For me this is so important, because even in the summer,  I don't get out as much as I used to, for various reasons.

I have read about the supplement Spirulina [blue-green algae] showing promise for ALS mice, so I bought a bottle, but lately I have been also reading that these same scientists who did this research on the mice, don't know if Spirulina can be harmful to humans. So, I'm taking it very cautiously.

Since most ALS patients die from complications like infections and pneumonia, I look for anything which can slow down progression.  In the 70 years since Lou Gehrig died, there is only one drug [Rilutek/Riluzole] which is supposed to slow progression and only add about three months to our lives.  Whenever I hear of an ALS patient surviving a hospital stay, due to pneumonia or other infection, he/she always comes home with worsened ALS -- that is, IF he comes home.  I look at it this way -- good health and especially a strong immune system, won't cure ALS, but it will help me keep infection away, or help me fight anything I get.  It's the only defense we have.

Writing a book is harder than I thought, especially in my situation: a studio apartment with an aide, and the television going most of the time.  Luckily, my daytime aide goes shopping for groceries in the morning, and I have some quiet time.  And often in the afternoon, she goes in the kitchen and reads for about an hour, so I sneak in a little writing time then. But it's so hard for me to put together the chapters.  I never really took a course in writing a book, so I have no knowledge of book-assembling technique.  I'm doing the best I can, because I don't have money to take online classes right now.

Will eating healthy and vegetarian cure my ALS?  Of course not.  But I need to drop weight and get my blood pressure down.  Losing weight is so difficult when I can't really burn calories.  I keep hearing at my support groups that ALS patients need to take in more calories, because we burn calories faster.  Whoever came up with that has never met me! Why isn't that true for me?  In the first couple of years of this disease, dieticians and doctors told me "Eat whatever you want, and eat a lot", so I did!  And now I'm overweight and suffering from high blood pressure for the first time in my life.  Oh well, I keep trying.
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