I bought Tara a toy poodle before we got married. We initially named him Yogi, because he was solid black and he looked like a baby black bear. When he would pee on the carpet of our first house, we couldn't ever remember his name so we changed his name to Toby. That name stuck. As soon as we had kids, Tara forgot all about Toby, so he became my dog. Once he became my dog, my friends made fun of me unmercifully. Being secure in my manhood, I told them to go _ _ _ _ themselves. Toby is now 16 years old. In his old age, he has lost all of his teeth, except for his two lower fang teeth. Because he has no other teeth, the two he does have stick out and make him look a little like a menacing shark. He walks unsteadily and his nerves are shot, so he shakes and trembles all the time now. Without a doubt, he knows I'm sick, so he has taken on the job of protecting me. He literally attacks any person who gets anywhere close to my bed.  I've watched every episode of The Dog Whisperer and I haven't been able to make him quit. It really drives me crazy, but he drives everyone else crazier. Keep in mind he only has two teeth, so even if he bit someone, it would feel like two boiled okra clamping down on you. Every day, however, someone gets mad at him and slings him off the bed. He often gets thrown into the armoire or the side of my wheelchair. It really breaks my heart to see him treated like that, but with no ability to move my arms or say anything, there is absolutely nothing I can do about it. Because I can't speak, I can't even call his name to get him to come to me. The worst thing of all, however, is that I can't even pet him and console him afterward. It is the little things like this that make ALS so hard. If Tara doesn't kill him first, I truly believe that Toby will allow himself to die as soon as he realizes that I've died. If that happens, I want my friend and protector buried with me.

I hope everyone had a joyous holiday and best wishes for a happy and prosperous new year. We were able to spend time with Tara's family, and my family. It was a very relaxing holiday and we got to spend a lot of quality time.

Truth be told, I wanted to take the family to the slopes, but my family reminded me that I can't function in the cold. Every muscle in my body freezes up and simply will not work. I can't even control my wheelchair when I'm cold. My muscles lock up and my left driving hand gravitates toward the center of my body, causing my chair to spin uncontrollably to the right. It's actually dangerous for me and everyone around me.

Over the last month or so, my body continued to decline. I can't do anything on my own anymore, except operate the computer, and that is even getting more difficult. I've learned so much as this disease has progressed. Tomorrow, I thought I would share a few things I've learned.

Imagine you were riding a horse and you were thrown off, breaking your neck, resulting in paralysis from the neck down. Or maybe you were in a car wreck and you had to have both legs amputated. Or imagine you were diagnosed with ALS. How would you respond?

Tara and I have had so many people that have told us how strong we are...or must be to deal with the effects of this disease. They often go on to say that they couldn't possibly handle it. Well, I think many of these people are selling themselves short. In my experience, people usually rise to the occasion. For example, think about all the people who lost literally everything in the recent Indonesian tsunami, yet somehow they move beyond the grief and get on with their lives.

Elizabeth Kubler-Ross in her book On Death and Dying described the 5 Stages of Grief as denial, anger, bargaining, depression, and acceptance.  Basically, we have to experience the pain of the loss and then get over it and move on. Of course, some people never do get over it, but I think most people “choose” to...because the other choice is to give up.

I admit that when I first found out I had ALS, I was scared to death. I still am. I don't think I ever went through denial, probably because my grandmother had ALS. I definitely went through anger, bargaining, and depression. Eventually, Tara and I came to grips with the diagnosis and everything that goes with it. With few exceptions, everyone else I've met with ALS has responded similarly.

Having accepted Jesus Christ as my Lord and Savior gives me great peace. I know when I pass from this life, I’ll be with the Lord for eternity. I have to admit, though, I am still afraid to die. Specifically, I can't seem to accept that I'll be leaving my family and the three loves of my life…Tara, Will and Alli behind. I'm not sure if, while I'm on this earth, I'll ever be able to accept that.

Having my family support me as my body deteriorates, gives me a sense that I'm not alone. My family and friends have been incredible, but Tara has the biggest cross to bear. I always knew she was strong. My friends describe her as the most “capable” person they know. Her father died after a long illness when she was 14. This was the Lord preparing her for what she's having to deal with now. She’s my shoulder to cry on, and her energy doesn't allow me much time to feel sorry for myself. We made a commitment to each other when we got married 14 years ago to care for each other for better or for worse. Tara has been there for me through it all, and every day I love her more for it. 

You too are stronger than you think.

I hope your Independence Day weekend was all you hoped it would be. Mine was! My cousin Ray came over from Houston for the weekend. We had a ball just hanging out, eating lots, and playing in the pool. See the pictures in the photo album on the left. The most interesting part of the weekend was last night when my son Will, 12, saved me from being seriously hurt. Let me explain.

We were invited by neighbors to watch their unbelievable fireworks display. They live close enough that I drove my wheelchair across a few backyards to get there. When we got there, they had a massive amount of big fireworks spread out all over 5 plywood sheets. All the women and girls moved to watch the display from the deck, while the men and boys moved about 15 feet back from the fireworks...dumb, really dumb.

The fireworks started about 8:30 pm. These weren't your Mom's fireworks. This was an elaborate display of firepower that was more like a professional setup than anything I've ever seen done in someone's backyard. It was awesome, and I had an incredible view because my chair has the ability to tilt back to the point where I am looking almost straight up. 

We were about 15 minutes in, when something went wrong.  A large spinner rocket was lit and it began to spin on the ground throwing sparks everywhere, and it began a chain reaction lighting the other fireworks on that end of the plywood. All of the sudden, fireworks including hundreds of firecrackers, bottle rockets, missiles, etc., were going in every direction, and everyone was running away. I, on the other hand, was totally unable to move, because with my chair tilted back, my arm wasn't strong enough to get my hand to my wheelchair controls. I couldn't even get my hands up to cover my face, which was being pelted by burning debris and sparks. It was the first time since my diagnosis that I felt paralyzed and totally helpless. According to Will, I was screaming like a girl. I don't remember that part, however.

After what seemed like a few minutes, but was probably more like 4 or 5 seconds, I felt people tugging at my chair from behind. My chair weighs over 300 lbs., so I knew no one, not even 4 men would be able to budge my chair. About then, Will ran into harms way, positioning himself between me and the exploding fireworks, and shielding my face with his body. He then coolly turned my chair on and began slowly driving me backward and away from the danger. I was amazed at how calm he was under fire. He was so brave. I don't remember ever being more proud of him. As Will began driving me up the hill, my father in law, Bruce, ran up with a chair and he held it up to shield Will and I from the exploding fireworks. They are both heroes in my book. In all fairness, the other men were also trying to help, they just didn't know how to get my chair to move.

When it was all over, about a third of the fireworks discharged. The show went on, but everyone moved back a safe distance this time. Given that no one actually got hurt, it was probably good for the kids to see how dangerous fireworks can be. I should have known better, however.

It's been a really interesting week. Tuesday, my sister Lisa, her two boys, and my family were at Costco. It was very hot outside so I drove my chair over to the sitting area by the snack bar and began sipping on a Coke. Lisa's son Sims was sitting with me. A woman and her son approached me and asked me if it would be OK if they laid hands on me and prayed. The woman moved to my right side, and her son to my left and they each placed their hands on my shoulders. This actually happens to me fairly often. What made this situation different is that the woman was praying and intermittently speaking in tongues! Stranger still is that Sims was sitting 3 feet from me the whole time...and he heard nothing unusual. I have to be honest and say that I felt the power of the Lord come over my body as she was praying. My entire body warmed up and I was tingling from head to toe. I have never experienced anything like it. Tara, Lisa and the other kids walked up near the end of the prayer, and by this time everyone in the area was looking at the commotion. I was overcome with emotion, as she quit praying.  I looked over and saw a stranger sitting a couple of tables over and she was crying. Everyone was crying. It was quite a spectacle. I had the unmistakable feeling, however, that something big was going to happen to me in the near future.  

Thursday, very big news was announced by researchers at Johns Hopkins about a breakthrough in stem cell therapy. In short, researchers were able for the first time to use stem cells to overcome paralysis in rats. Only two years ago, this was thought to science fiction. The article (click the link below) talks about how this type therapy could someday help those with spinal cord injuries, and people with ALS. The significance of this announcement is that for the first time, stem cells have been used to actually repair damaged motor neurons in a living animal.  

I've seen or read about enough potential treatments that worked in rats that did not work in humans to know that this is no slam dunk, but it's still pretty exciting. I feel God was sending me a message of hope, in the face of hopelessness.

http://edition.cnn.com/2006/HEALTH/06/22/stem.cells.cnn/

God is awesome the way he constantly shows me he is operating in my life. In my last entry, I wrote about the swim spa (pool ) we ordered online. We saved thousands by ordering the pool online, but the problem is that we had to arrange to remove the pool from the 18 wheeler the minute it arrived. Through God's providence, I happened to have good friends, Steve and Susan Upton, in the crane business. They own CraneWorks, based out of Birmingham, AL. In a conversation I had with Steve at my sister Lisa's last birthday party, I learned that CraneWorks had recently expanded into the Nashville area. What are the chances that a) I would need a crane, or b) I would know someone in the business? It's definitely a God thing. Well, the pool was delivered Tuesday. Steve's crew from CraneWorks was incredible. See the pictures below of the CraneWorks crane lifting the pool and placing it in the backyard next to our new Rhinocourt.  Thanks so much for the help Susan and Steve.

Tara and I had this bright idea several months ago that since It is going to get harder and harder for me to get out of the house, maybe we could create an environment where friends would come to us. We researched different ideas to enhance our backyard, and we ultimately settled on the construction of a Rhinocourt. A Rhinocourt is a multi-sport court that accommodates basketball, volleyball, tennis, badminton, roller hockey, and more on the multi-purpose surface.   The court was finished about 2 weeks ago, and there have been kids enjoying the court from dawn to dusk every day since then.   I am definitely going to have endless entertainment in my backyard...just what I was hoping for. I'll post pictures of the court soon, but in the meantime, see a picture of a similar court below.

I began hydrotherapy about 2 months ago. To this day, every time I get in the pool, I get a grin on my face that I can't shake for the entire hour. I am certain my therapist thinks I am retarded. Once I'm in the warm pool, I can exercise my arms and legs in ways I couldn't possibly move out of the pool. Although I am certain the therapy I've been attending twice a week has helped me maintain strength and flexibility, I think it helps me even more mentally. The very first time I got in the therapy pool, I knew I had to.get a pool of my own that I could use every day.   I researched all the "swim spas" on the market to find the best pool for the money.  A swim spa is like a big hot tub (8' x 15') that has 6 spa seats on one end and a deep end where you can swim in place against a current made by powerful jets. Since the pool is heated, I figure I can use it at least 9 months a year. Tara and I ordered a swim spa made by Sunbelt Spas and it will arrive sometime this week. It should be delivered in a few days. 

We are having a deck built to accommodate the pool. Hopefully it will all be complete in a couple of weeks. In the meantime, a picture of a swim spa is below. When the deck is completed, everyone is invited to come by and help us enjoy our new toys.