Message From Kathy -

Today, Wednesday, August 9, 2006, I went to Virginia Mason.  Jay drove me and I went alone for the first two hours.  I purposely didn't tell anyone I was going as I wanted to do this myself.  What I found out was I have lost seven pounds since May, which I attributed to the heat and my not wanting to eat when it was so hot.  However, the providers convinced me that due to the trouble I have with swallowing I am probably not eating enough.  So, the feeding tube was discussed again.  I was very upset as my mind went wild.  Jay came in right after the physical medicine doctor told me that.  It was lunchtime and we had to wait till I stopped crying for about five minutes before we could go.  When we came back Dr. Ravitz, my neurologist, was there for his time.  He examined me and said that nothing in my arms or legs had changed much.  He did tell us that I have had symptoms in all my extremities all along.  As we are aware, most ALS folks have findings for a very long time before they are diagnosed.  He assured us that the findings are NOT worse. 

We then talked about the feeding tube called a "PEG Tube."  He explained that my weight loss of about 10+ pounds since January is a concern.  It doesn’t mean I can’t eat.  I will still eat whatever I want, but the feeding tube will allow me to get all the nutrients I need.  It has been proven that ALS patients do better on a good nutritional diet.  I probably have never had a good nutritional diet.  He said this does not mean I am at the end of my disease.  I can live for a very long time with a feeding tube and if a cure is discovered it can be removed.  So it looks like I will be getting the feeding tube within the next one to two months.  I will probably have it done at Virginia Mason.  I will meet the surgeon, then have the surgery, spend the night, and the next day be instructed how to care for it and use it.  I have asked if I could swim with it.  He didn't know, but I was the second one to ask that! 

All in all the day was okay.  Just think I won't have to worry about cooking!  As most of my family and friends have known for the last ten or so years I haven't wanted to cook.  I also won't have to drink Ensure any more.  Ensure is very expensive - $7-$9 for 6 of them.  The supplements are covered under either Medicare and/or private insurance.

I want to thank all of my family, friends and those I don't know who have helped with the fundraising, prayers and being there when I need them to be. 

Love,

Kathy