Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Thursday, June 11, 2009
I have been doing a lot of research on nutrition. My triglycerides are high and I am really bothered by the amount of sugar in Osmolite, which goes in my feeding tube. I am still plagued by my new obesity, which is not only unattractive but extremely uncomfortable for me and for the aides who have to transfer me. When I am at physical therapy, the room is lined with mirrors and it depresses me to see myself. It further disturbs me that there don't seem to be any alternatives out there. They are all filled with sugars! I want to make my own mixtures, so I am looking at recipes. Then, how to get the aides to keep mixing up these concoctions for me?
I think these tube feeds are made for people whose weight has gone down to nothing, and that is not the case with me. I know I am going to get a bunch of emails from well-meaning people who want to make me feel good by convincing me that I am beautiful anyway, that my weight is not important. Thank you, but It's not about that. When you can no longer apply makeup, take regular showers, insert contact lenses, and have to be confined to a wheelchair, obesity is not something you want to deal with. It's unhealthy, unhygienic, and yes unattractive to someone like me who has never had more than 20 pounds to lose, and that was optional because it was a matter of clothing no longer fitting, and never affected my health.
This is not just some shallow desire. It is a challenge I need to handle. I have been researching mixtures that will be easy to blend up and provide all the nutrients I need. I have been taking supplements. And I have been trying to do exercises in the wheelchair to fill in between my twice-weekly physical therapy sessions. Suggestions?
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I have a suggestion for you. Have you ever looked into the amount of breathing you do? By that I mean the ratio of oxygen to carbon dioxide? You should read about hyperventilation and Dr. Konstantin Buteyko. He created some breathing exercises that oxygenate the body better by increasing the level of CO2 in your body. The result is a higher metabolism rate so you lose weight. These exercises were initially used for people with asthma. You should research it and then talk to your doctor to see if he thinks it is ok for you to do. There is a Buteyko educator in NY. His name is Bud Wiese. Two books, Asthma Free Naturally by Patrick McKeown, and The Carbon Dioxide Syndrome by Jennifer and Russell Stark are two good books explaining the science and exercises behind it. Let me know what you think.
All my best,
I can certainly relate! I went into the Air Force at 19 at 190 lbs. I was always within 10 lbs of that, even after diagnosis, until about 18 months ago, when I began the overnight tube feeds with the kangaroo pump. I've gone from a 34 waist to about a 38, and definitely am not fond of the mirrors. Here's a link to check out. I'm contemplating getting another Vitamix blender and getting off the Ensure. Good luck!
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