To start at the beginning, I had been married to the most heartless woman one could imagine until December 2001, when my divorce became final. My ex-wife was awarded $2,000 a month in permanent alimony -- the judges basically indicated that it was of no concern to them how I lived. I had met Nancy and believed that we were truly meant to be together, so despite the lack of money we were married on Dec 22, 2002.

Nancy and I had a great and happy life. Things were going good, and the first time in our lives, we knew what love and happiness were. We did not talk about death, dying or even being sick... We traveled, watched moves, ate and enjoyed what the world had to offer.

Then came the year 2005, which I believe was the first year of the onset of Nancy ’s battle with Lou Gehrig's disease. In May 2005, she started complaining about leg pains and bones spurs. After more than 13 months of tests and more tests, physical therapy, x-rays/e-rays and all that stuff, a diagnosis of ALS was made by Dr. Brill, a rude and unkind neurologist from Anderson, South Carolina . Our Dr. Scott had said that Nancy probably had ALS but he was not sure. Making no recommendations or offering any advice, Dr Brill calmly told us both that Nancy had ALS and informed us that we might want to get a second opinion. Of course we were upset, crying and confused. Nancy had progressed enough to need a wheelchair, so I asked him to write a prescription for a wheelchair and a walker. He stated that he would not do that -- his job was only to diagnose and not to write prescriptions. At this point, I have to stop and shed a tear and plead with any readers from South Carolina to never go to the Anderson Neurological facility

After 2 months of calling all over North Carolina , South Carolina and Georgia , I was finally able to get Nancy to an accredited ALS center at the College of Georgia in Augusta . On August 11, 2006, following about 7 hours of testing, we were told by Dr. Rivner that the initial diagnosis was correct. He then recommended and prescribed Rilutek and some other drugs, but we had no idea what was ahead; to tell you the truth my head spins just writing this. I took her home, where I felt overwhelmed. She could still speak and I was able to leave her at home; I could call her hourly and this seemed to be ok. I also had friends check on her but after only a few days, Nancy seemed drained of any energy and we knew she needed a feeding tube, which was put in on Aug 15, 2006 at Greenville Memorial Hospital.

At the beginning of September 2006, Nancy was not doing very good on Bi-Pap and had said she was having problems breathing. Our friend Martha Tweed, who was staying with Nancy on Sundays and Mondays, transported Nancy to the ER at Easley Memorial Hospital on September 4, 2006. Informed that my wife would only be able to live if she was put on a ventilator, I asked the emergency room doctors to keep her alive and they did just that. I thank the Lord for Martha being there to take Nancy to the ER. Her left lung filled with fluid, Nancy had a deadly case of pneumonia. Although she was incubated and given very good care, I was told she would only live for a few months and that was providing that the pneumonia did not take her life. She was trached and vented on the 16th of September. Nancy was at the Easley Memorial Hospital from September 4 (the last day I heard her voice) to September 21, 2006. She had full range of motion, could turn and had great upper body strength. Things looked OK but not good.

The next writings will be hard for me as it is the most upsetting part of our ALS journey. In our final days at Easley Memorial we were overwhelmed about the next phase of our lives and marriage. We were told that Nancy would only be released to a rehab center. Her daughter Hilary was with us at that time to help with the decisions. The social workers were not much help at all, and the rehab centers sent their agents out to give us their sales pitch -- I do not recall the names of all the centers. We decided that Regency Hospital Centers or RHC had a good plan and that would be the best for Nancy. Boy,

was that a bad choice!  From day one, RHC wanted to know my discharge plan for Nancy; they informed me that after she was “weaned” off the ventilator that she would be discharged and I would have to take care of her or put her in a nursing home. Now, when you are not married even 4 years and are only 49 years old, this is not what you want to hear, but guess what – NO ONE CARES!

I was promised that Nancy would get daily physical and speech therapy, as well as a good diet.  Well guess what – THAT WAS ALL A LIE. Regency informed me after 2 days that Nancy refused all physical therapy and did not want to even try to speak. Maybe this was because of a very aggressive weaning program. No ALS patient goes from Bi-Pap to pneumonia to aggressive vent weaning within 3 weeks. Well after 52 days Regency Hospital had successfully prepared Nancy for death. She was 100% weaned from the ventilator, although her CO2 levels were sky high and she looked like death. At day 54 I was finally able to convince the staff that ALS patients cannot be weaned. Finally, she was placed back on the ventilator but I was told that she would never walk, talk, eat or speak again. This was on Nov, 11, 2006. Then I asked Nancy what she wanted for Thanksgiving and she told me she wanted to spend the night with me at the RHC Long Term Care Center . I asked the staff about this on 13 November and was told no problem. On Thanksgiving day, however, I was informed that I could stay but I would be 100% responsible for all of Nancy ’s care. Since I had not been trained on vent care and administering of meds, I was then told we could not spend the night together. We cried for several hours, and I am still mad about that at this time. On the day after Thanksgiving, I was told that Nancy would have to go to Anne Maria Nursing Home or go home--it did not matter to the discharge manager FRANCIS ECHOLS, surely the most uncaring woman I have ever meet. With reluctance and no assistance from the staff at RHC, I had a friend take me to North Augusta , South Carolina , to do the paperwork for Nancy to spend the rest of her life in a bed, just being allowed to lie there and die.

She was in Anne Maria from November 29, 2006 to June 7, 2007. When she went into the nursing home, Nancy was on 19 drugs; when she passed away, she was on 39 drugs. She had attended one ALS clinic at the Medical College of Georgia, had been in the emergency room at Aiken Regional Hospital for 2 weeks, and in the ER at University Hospital in Augusta for 1 week. My opinion is Nancy died from choking and a lack of trach care; the official cause of death was listed as heart and lung failure. I want to make it clear:  ONCE YOU REACH A NURSING HOME, YOU HAVE TO MAKE DECISIONS AND KNOW WHAT TO EXPECT – DO NOT WAIT ON THE DOCTORS TO TELL YOU WHAT TO DO. It seems like once you reach that point, your only friends will be the coroner and morgue.

In the almost 2 years of dealing with ALS I can count on one hand the people that cared or knew anything about the disease -- these people include Dr. Rivner’s staff, a few nurses at Easley Memorial Hospital, and a few great ears from Sue Humphreys and people on the ALS TDI board.

This disease has aged me and embittered me towards health care and the legal system in America. Before Nancy died, I went back to court to explain to a family court judge that my huge alimony payments needed to stop or at least be lowered. I was told that my wife could stay in the nursing home and die. Well, that is exactly what happened.

I thank the Lord for giving me and Nancy the years we had together and for giving me the strength to make it through each and every day.