Wednesday, March 26, 2008

This is the letter that I wrote and used while speaking to our Congressman and Senators from Alaska at the ALS Advocacy Day May 2006.

Linda B. (Teal) Kreider
PO Box 1596
Ward Cove, Alaska 99928-1596

May 16, 2006

My Dad; in addition, was a wonderful husband for 54 years, awesome Grandfather, Great Grandfather and Uncle Charles Melvin Teal, Sr. He was born in Falls City, Oregon on March 28, 1925. “Mel” worked as a logging truck driver, yarder engineer and many other positions in the logging industry and then worked in road construction. We moved to Wrangell, Alaska in 1962 where my dad worked with Dick Sykes. In 1963, we moved to the Prince of Wales, Ratz Harbor, and my father worked with Clarence Kramer for several years. When I started high school, my father wanted his children to be in a public school, so we moved into the “town of Ketchikan”. My father continued to work at many different road construction sites throughout Southeast Alaska. My father loved the logging industry, loved working on the front-end loader, and played cribbage any time. He taught all of his kids to play cribbage, and to this day we still all play cribbage and his grandchildren and great grandchildren play!

Dad has four children, two daughters and two sons. All of who reside in Alaska. I watched my parents suffer the loss of my younger brother, Gregg in 1993. On the day of my brother’s funeral, my dad told me that he never thought he would be alive to bury a child of his and hoped that he would never have to do this again. Well, my father will not have to… my father lost his short, but courageous and hard battle to ALS, better known to people as “Lou Gehrig’s Disease”. He passed away on May 16, 2006 at 3:00 AM, Alaska Pacific Time at the age of 81 years young!!

The last time I saw my father, was Saturday morning, May 13, 2006. I went up to the New Horizon’s, a long-term care unit at the Ketchikan General Hospital before I left on my flight to attend the Annual ALS Association’s National ALS Advocacy Day and Public Policy Conference this week here in Washington, DC. Dad and I talked earlier about me going. He was so proud of me; he wanted his body to be donated to research for ALS. He said that this disease needs to be stopped! He told me to “give them hell honey”. I kissed him good-bye, we held each other, and I told him I would be bringing back pictures of me in front of the Lincoln Memorial and other pictures. I told him I would be lighting a candle for him and others at the Annual Candlelight Vigil Monday, May 15. I also told him that I would hold that candle in memory of Lu Tice, my oldest son’s grandmother, who also passed away 2 years ago to ALS. (Grandma Lu Tice also worked in the same logging camp as my father.) My dad smiled and said I could make a difference, “all we can do is try honey; anything is worth a try”.

I really did not want to be so far away from him. Dad was “diagnosed” in January 2006, just 4 months ago, although he was having symptoms in October 2005. Dad’s last day to “walk on his own” was November 4, 2005. He used a walker for a month or so, then to a wheelchair. Because of Medicare regulations, he was not eligible for Home Health Care at that time. They said, “Just because he chooses not to go down the 18 stairs, and be lifted by several of us, he is not eligible for home health care”! We took my dad south to the Swedish Medical Center for appointments, 6 specialists, who ruled out all other disease that COULD be causing all the problems. However, the doctor’s best diagnosis was “it appears to be a lower motor neuron disease”. That was it… My dad’s comment was “at least I am 81 not 51”, and “I have had a great life, done all the things I have wanted to do, I am happy with my life, it’s complete”. I knew then that we had a fight on our hands.
There we were, my dad and mom, and me… standing there…with the look of “where do we go now? what do we do? We had been in Seattle for almost 2 weeks. My sister in law gave us passes to come down to Seattle. My father believed that Medicare was assisting in the trip or he would have never gone. We stayed in hotels, spending well over $3,000.00 in food and accommodations and transportation. Medicare did not reimburse for travel and accommodations even though the services that my dad needed were not available in Ketchikan. The trip down was worth it, we needed to know what it was that dad had. It was not a definitive diagnosis, but a start. We signed up on ALS’s website, got our books for patient, caregiver, family member and for the physicians in Ketchikan, so they could have some resources too. Great information and wonderful resources. Well, my best description of that is: It is Christmas Eve and I am looking at an instruction book on how to put together a huge dollhouse in less than 2 hours! ....Everything that I read was overwhelming. No chapter or support group in Alaska to contact. We were lost. We moved my mother and father out their home for the last 16 years into my family’s home on February 18, 2006, so that dad did not have to have any stairs to maneuver with the wheelchair. The wheelchair he had was a loaner from a friend. A prescription for a custom-made wheelchair was given to the local healthcare equipment distributor, as my dad is 6’4”. The chair he had was made for someone about 5’ or less. It took more than 5 weeks to get this chair and when it was delivered, it was the exact chair of what he already had. Dad told him to take that back and get what his physician ordered. I called the company myself. I was told, “that is all I GET REIMBURSED FROM MEDICARE”, I told him to repeat what he just said, and he said it AGAIN. I told him that was fraud...that my father was to have a chair that fit HIM. I told him I did not care what it cost, that my dad needed a chair that fit him and to get it now! It took another 2 weeks and we got it. About 2 weeks later, my father needed to have a hospital bed. The story on the hospital bed was pretty much the same “can’t have a larger one, as Medicare doesn’t pay for a different size”. My father was so uncomfortable, his feet hit the footboard, and we had to move him and the mattress up several times a day, as he would slide down. The mattress had to be replaced as it “fell apart”, the motor to the bed fell off, and it had to be replaced. Yet, the company still refused to get a bed for a person over 6’ tall as the company said “Medicare doesn’t pay for this; this is all that is allowed”.

On May 4, we had to have the ambulance take my father to the Ketchikan General Hospital. He was having difficulty with his bowels. He was in so much pain, I have never known my dad to cry, and he cried. He was admitted into observation, as “Medicare doesn’t recognize this as medically necessary treatment or condition to be admitted for long-term care”. My father had not had a bowel movement in 3 days. The doctors and nurses had to physically reach up and remove the feces. This went on for a couple of days, making sure there was a male nurse with long fingers to assist in this! Dad was humiliated, embarrassed, etc. We got my father into long term care, not sure what happened paperwork wise, but he got to go into a nursing home. He had lost use of all his back muscles. Swallowing became harder and then, breathing was becoming difficult. He was receiving oxygen, but was not put on ventilator. He did not want to live that way.

I attended the Candlelight Vigil Monday evening. I received a call a few hours before the vigil and was told that my father had taken a turn for the worse, and had developed pneumonia. His doctor told me that he and my dad had spoken earlier about me and the he did not want me to come home. He wanted me to continue doing what I came to do and so I did. During the vigil, I held my cell phone out, my sister put the phone up to my dad’s ear, and he heard the music, smiled, and nodded his head. He knew I was there. I told him I was looking up at the Lincoln Memorial and with the Washington Monument at my back and candles were lit for him and all others with ALS and those who have lost their courageous and hard battles to ALS. I cried and cried; my fellow advocates were there to hold me and I felt so selfish in my crying over my father’s dying as one of the ladies I was standing with has her husband at home who has had ALS for over 10 years.

I promised my dad and my family that I would attend and stay throughout the session and make my journey to Capitol Hill and, here I am to encourage and plead for you pass the ALS Registry Act (H.R. 4033/S.1353), legislation that would authorize the Centers for Disease Control and Prevention to create and maintain a single nationwide, ALS registry. This ALS Registry Act would help identify the incidence and prevalence of ALS in the US and collect data, which is urgently needed for ALS Research, disease management and the development of standards of care. A National ALS Registry will also promote a better understanding of the disease, help to determine causes of ALS and significantly enhance the nation’s efforts to find a treatment and cure for ALS.

Also, please support ALS specific research at the Department of Defense’s (DOD) Neurotoxin Exposure Treatment Research Program (NETRP). Currently, there no funding appropriated to the NETRP is used to conduct ALS specific research despite the fact that studies repeatedly have shown the military personnel are at a greater risk of dying from ALS than those in the general population.

Linda (Teal) Kreider, daughter of Charles Melvin Teal, Sr.

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