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6月4日 Memorial Day Trip to DestinMy family and I went to Destin for our annual family trip Memorial Day. It was quite a production getting me down and back. I have quite a bit of equipment to transport these days. I have all sorts of things I have to bring with me now including items I need for my bed, my computer and it's floor stand, a bipap machine, a suction machine, a shower bench, a portable ramp, etc. My whole family was there. There were about 35 of us in all and it was great to see everyone. Sunday night we had our annual dinner and picture at my Aunt and Uncle's house in Seaside. When I got there, however, everyone came to see me and I was totally overwhelmed with emotion because I realized it would almost certainly be the last time I would see everyone. See the picture below. 5月15日 Living in the MomentAre you living in the moment? Do you find yourself at home thinking about work, and at work thinking about home? Before I got sick, I was definitely guilty of living in the future. I spent most of my life distracted by thoughts about things other than the task at hand. I was always thinking of the future and assuming the future would be better than the present. In the future, I would make more money, have a better house, take better vacations, etc. Since I've been sick, I don't have all the distractions I used to have. I've learned to live in the moment and enjoy the moment at hand. Think about the moments in your life you vividly remember. Those are the times you were living in the moment. Living in the moment is easy during the significant moments of your life such as your wedding day, or during a great vacation. Most days don't have significant moments, though, and if you’re not careful, the every day fears, resentments, stress and distractions will rob you of your life. I was reading about living in the moment on a great website, www.positivepath.net, and they suggested we practice living in the moment. Play some music, take a warm bath, relax and enjoy the warmth of the water. Get off the highway and drive to or from work using a different path and concentrate on your surroundings. Enjoy a meal that's worthy of being your last meal. Who knows, it very well may be your last meal. Remember: The past is history. The future is a mystery. The only time we really have is now - just this moment. 5月2日 My ProtectorI 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. 4月23日 Missing Bees
I have far too much time on my hands, so I read a lot. I've been reading about a problem and I wanted to share the good news…Has anyone heard about the mysterious missing honey bees reported last week? Bee keepers all over the nation are reporting that whole colonies of bees are disappearing. Bee keepers on the West coast are reporting as many as 60% of their colonies have abandoned their hives, and on the East coast numbers are as high as 70%. Bees are also reportedly abandoning colonies all over Europe.
Why should you care? Well, this isn't about a honey shortage. Most of the world's crops are pollinated by bees, so a lack of bees could be catastrophic to the world's crop production. No one really knows what's causing the bees to go missing, but I've read that some believe it's mites, others think it's pesticides and Al Gore is blaming global warming. The latest and most plausible theory, however, is that radiation given off by cell phones and other high tech gadgets may be interfering with the bee's navigation system used to find their way back to the colony.
Did you know Albert Einstein once said that if the bees disappeared, "man would have only four years of life left". Hmm. 4月18日 Va Tech MasacreLike everyone else, I've been glued to the television watching the latest developments at Virginia Tech. Events like that remind us how fragile life is. Many times I feel guilty about the extra attention I get because of my disability and the fact that doctors assure me that my number will be up soon. As I've said so many times before, none of us knows when our time on earth will end. I feel so grateful the Lord has given me this time to prepare myself for the end of my earthly life and get right with God. I’m also glad God didn't call me home during my years at Auburn! At that time in my life, I called myself a Christian, but I didn't behave like one. My Salvation at that point was far from certain. For that reason, I do worry about the 20 or so victims in Blacksburg, Virginia. I would gladly have taken a bullet for any of those poor souls who may have needed more time to get right with God. I know I'm beating a dead horse for many of you. I also know, however, that several people who read my blog are walking a dangerous line and have not fully committed their lives to Jesus. Most people believe in God, even Satan does. But to receive salvation, we must turn to God, form a personal relationship, turn away from our sins, and follow Him. We must trust in Jesus with everything we have and everything we do. "We are made right in God's sight when we trust in Jesus Christ to take away our sins. And we all can be saved in this way, no matter who we are or what we have done" (Romans 3:22). The Bible teaches that there is no other way to salvation than through Christ. Jesus says in John 14:6, "I am the way, the truth, and the life. No one can come to the Father except through me." To become a Christian, repent of your sins, and accept Jesus Christ as your Lord and Savior. Once you've truly accepted Jesus Christ as your Lord andSavior, and you've publicly proclaimed this by being baptized, you are saved and will have everlasting life. This is the way to heaven. The only way! 3月21日 Spring BreakIt's Spring Break for my kids this week. We kicked around lots of trip ideas, including a cruise, Destin, and Hawaii. In the end, I decided traveling that far would be potentially risky for me. It is hard for me to get comfortable these days. As a result, I decided to send Tara, Will and Alli skiing with some friends in Breckenridge. They are having a ball skiing in one of my favorite skiing locations. I want my kids to love skiing as much as I do. I also feel like Tara and the kids need a break from caring for me. I say that because studies show that ALS patients don't really get more depressed as the disease progresses, yet Caregivers show a significant increase in depression as the disease progresses. Although the results of this study may seem counterintuitive, I believe it's accurate. Watching my body wither away has been hard on my family. The strain of my constant needs is sometimes overwhelming. Yet I feel my outlook has remained relatively steady throughout the course of the disease. I hope they're having fun. I am. See the picture of me kicking back below. 3月6日 Sims Family ALS Research fundFYI. My Decatur, Alabama friends know how successful our Sims Family ALS Research fundraiser was last Spring. We raised more than $140,000 at that fundraiser alone. Money has continued to trickle in to the fund since then as well. I am excited to let people know where a significant portion of that money went. The board of the Sims Family ALS Research fund made the decision to donate money to the ALS Association. The ALS Association established the Bill Sims Jr. ALS Research fund which will in turn fund stem cell research aimed toward finding a treatment or cure for ALS. That should come as no surprise to those of you that know me. 2月28日 Bob Woodruf'f's return to ABCHave any of you seen the coverage of Bob Woodruf'f's return to ABC? It would be almost impossible to have missed it but in case you did, Bob was the co-anchor of ABC News who was seriously injured in Iraq when a roadside bomb exploded causing serious head trauma. I honestly had mixed emotions as I watched his triumphant return. It is obviously fantastic to see that he has recovered from such a devastating injury. To his credit, he focussed most of the attention on the incredible medical care he received and all the other soldiers and their families that are dealing with the same types of injuries every day. My mixed feelings emanated from the jealosy I feel that a celebrity who experienced this type of injury is bringing so much needed attention to the plight of all these poor soldiers who are being severely injured and maimed every day in Iraq.It is truly amazing how much attention a celebrity like this can bring to a cause. I would never wish ALS on anyone, but it would be so helpful to have a celebrity come down with ALS. It would tremendously help our efforts to get the word out about this dreaded disease.
My other observation was that Bob's injury is almost the exact opposite of ALS. His injury was instantaneously devastating. He and others with traumatic brain injury (TBI) then begin the long slow recovery process. Those of us with ALS on the other hand, start out normal, then slowly the brain and spinal cord begins to deteriorate. So, while someone with TBI is slowly improving, those of us with ALS are getting worse. It reminds me that I was praying for a brain tumor when my doctors began suggesting the possibility of ALS. At least a brain tumor, or even TBI gives you some hope of recovery. My belief in God's mercy is my hope. Thanks so much to all of you that continue to pray for my family and me. 2月25日 Alive HospiceI have begun receiving the services of Alive Hospice. It's time to face my own mortality. As some wise person once said, “None of us is getting out of here alive”. Signing up with Hospice has made life easier for everyone. They coordinate all my needs, including communicating with my many physicians, obtaining all my prescriptions, and getting me whatever equipment I need. They have a nurse visit twice a week, and she has been very helpful. They also have counseling services, and they have a pastor come by the house every week. Their purpose is not to try to fix things, they just manage my symptoms and will help me die with dignity. I am having more pain now because I've lost so much muscle in my back that my shoulder blades stick out and they feel like they are bruised really badly. When your back hurts, everything hurts.
2月14日 Personal updateThanks to everyone for your emails. I think someone must have put out the word that I'm about to kick the bucket. I don't feel like I'm dying but my body continues to shut down like clockwork. I spend most of my time in the bed now, only because I'm most comfortable there. If you have a sleep number bed, you understand why. I can't walk any more, and I can barely stand. Even my feet are conspiring against me. When I try to stand, my ankles give out. It's unbelievable to me that I was snow skiing exactly two years ago, and now I can't move my hands, walk, or talk at all. Yet my mind feels sharper than ever, and I still feel good to great most of the time. I'm still able to get out when I want, but it takes a lot out of me when I do. Everything in my body shuts down when I get cold... literally. I had a great weekend. Most of my family came up and spent the weekend taking care of me. Tara took some well deserved time off and went to New York City with a few of her friends. We had a great time and spent Saturday and Sunday watching Will play in an indoor soccer tournament. His team placed second in the tournament, and this was quite a feat since there were two of the top five teams in the state in the tournament. They lost to the second ranked team 4 to 2. I was obviously proud of him. Alli got pink braces yesterday, and she looks so much older, more mature and more beauiful than ever. Maybe because she turns 11 tomorrow. It's sad to me, that, without an honest to God miracle, I won't see her turn twelve. I know that God has a plan for me, though. I'm still hoping that his plan is for me to travel the world talking about how prayer lead to my miraculous healing. I'll accept whatever his actual plan is for me, however. I'm hoping I get to watch the Titans play football next Fall, because I believe they're going to surprise everyone and win the Superbowl. I don't believe those around me think I'll achieve that goal. I plan to prove them wrong. Oh well, now I'm rambling. Happy Valentines Day everyone. 1月29日 Weekend updateGreat weekend. Friday and Saturday, we attended Will's indoor soccer tournament. His team won the tournament Saturday after playing four games, winning in the finals 7 to 0 against a team they tied 2 to 2 Friday night. Winning is more fun than losing, I don't care what they say! Plus, my parents were there to see it. I should also mention that Tara's parents were shopping with Alli, because she is over watching soccer games. I've always been a very competitive person. Now I get to vicariously enjoy the thrill of victory through Will's soccer and Alli's softball. I'm glad they enjoy team sports, because all of my favorite sports were individual sports. I loved snow skiing, tennis, water skiing, cycling, swimming, table tennis, etc. I wonder what that says about me? As an old HR guy, I was cautioned against hiring people who didn't like team sports because they weren't team players. I'm not sure I believe that's true...at least in my case. A couple of friends were kind enough to come by the house and take me to the movie Sunday night, even though it was 18 degrees. We saw The Departed. Great movie but a brutal ending that could have been better. Thanks Trevan and Craig. Due to a mixup, my friend Pat didn't make it. Sorry Pat. 1月23日 Be careful what you wish for!The other day, I was thinking about some of the things I used to wish for and it struck me that I had achieved several of my goals. I always told Tara half jokingly that I wanted to be retired by 40. Well, I missed that one by one year. I retired at 41. Every time I went to get my haircut, I loved getting my hair washed and scalp massaged and I dreamed of having someone wash my hair every morning. Well, my caregiver, Angelita, gives me a great scalp massage every morning when she washes my hair. I always wanted Tara to help me drive on trips. Now Tara does all the driving for our family. I dreamed of getting the big promotion. I finally achieved that, a year before my diagnosis. I always wanted breakfast in bed. Well, I now eat most of my meals in bed. In summary, be careful what you wish for, you just may get it. I now know that life is made up of a series of events that should be savored. I try to live in the moment and appreciate what I have, instead of always wishing for more. If you're not passionate about what you're doing, find something to do that will allow you to live your passion and work towards it. Stop saying words like “someday”. If it's worth doing...do it now. Life is too short. 1月16日 Good News? I had an appt. with my Pulmonologist Friday morning. They measured my pulmonary function (breathing) and miraculously, my breathing has actually improved over the last 8 weeks. My FVC went from 47% of expected to 55%.
There was one unusual development related to my visit. First, let me tell you that I've decided not to go on a permanent ventilator when my pulmonary function drops to the point where I can't breath on my own. That is a much more complicated issue I may discuss later.
Occasionally, people with ALS get sick because we tend to get food in our airway that leads to pneumonia. If I were to get a particularly bad case of pneumonia, I might need to be placed on a ventilator until I recover and can once again breath for myself. Here is where I'm confused. Eight weeks ago, my FVC was at 47%.I asked my Pulmonologist at that time, if I were to get a bad case of pneumonia the next day, and I was placed on a vent, would I be able to come off the ventilator? She said, yes, most likely. During this past visit, however, she said NO, despite the fact that my FVC improved. This makes no sense to me at all. During the PFT test, they also measured my ability to forcefully breath in (MIP), and breath out (MEP). My MEP remained the same as my last visit at 44, but my MIP decreased slightly to 28. I was told by the Tech that an MIP below 20 is the critical level where a ventilator couldn't be removed. Given these numbers, I am perplexed about why my Pulmonologist would now say that I would NOT be able to come off a ventilator if I needed a vent to survive an acute illness such as pneumonia. I tried to ask her at my visit, but I don't think she understood me.
If anyone could shed light on this for me, I'd love to hear from you. My personal belief is that she is just preparing me for what she perceives as inevitable. Any comments or thoughts? 1月9日 The Incredible GiftIt's easy to feel sorry for myself and my family for the tragic experience of living with ALS, the always fatal disease that will almost certainly take me home this year. But most of the time, I prefer to think that God has given me an incredible gift. Not many people get the opportunity to experience the richness of life the way I have in the two years since my diagnosis. I've had the opportunity to reconnect with old friends, and spend more quality time with with my good friends and my family. I've been able to get my affairs in order in a more thoughtful way because I have a pretty good idea what the future holds for me. I've gotten to work on projects and ideas that had been in my head, but I never had the time before to make them happen. I've grown much closer to God over the last two years. I am more at peace with my place in God's Kingdom than before. I've had the opportunity to see the best in people as friends have stepped up to help Tara and I with meals, carpooling the kids, cutting our grass, and many other things I couldn't possibly list. Total strangers have amazed me by, occasionally, anonymously paying for my families meal, offering to help me constantly, offering my family a free Country Club membership (which we were unable to use), and stopping what their doing to pray with me. These random acts of kindness have touched me in a way that few people get the opportunity to experience. Thanks to the many people who've helped me or my family in some way. I'm eternally grateful. I hope each of you are lucky enough to get to experience the quality of life I've been blessed with over the last two years.
"'For I know the plans I have for you,' declares the LORD, 'plans for wholeness and not for evil, to give you a future and a hope'" (Jer. 29.11). 1月4日 Random ObservationsA few observations and other things I've learned sinceI became ill.
1月3日 Happy New Year!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. 11月16日 Tell The Kids...Or Not?Think for a minute... If you were diagnosed with a fatal illness, would you tell your kids that you were dying or not? Many people ask Tara and I how the kids are doing. In general, I think they are doing very well, in spite of the fact that they are obviously concerned about my declining condition. Their grades continue to be high, they are happy, outgoing, and they both have lots of friends. All the books we read after I was diagnosed were in agreement that we had to be honest with our kids (ages 10 & 12) about my condition, or risk them feeling like Tara and I lied to them causing them to lose trust in us. So, Tara and I have always been very open about my illness. I have to confess, however, we always sidestepped the, "Daddy, are you going to die" question. We would respond to those questions saying something like, "Everyone is going to die", or some other vague answer. Over the last month, as my condition has deteriorated, I knew it was time to discuss my inevitable death with them. So many nights Tara and I kicked around how to bring it up in a way that wouldn't iust hit them between the eyes. Then God stepped in. Will was on the internet doing research for school, and he ran across a video of a girl saying goodbye to her Dad who was killed on 9/11. The video upset him and that piqued Alli's interest. She proceeded to get very upset. Tara and I knew that this was the time to openly talk them about my eventual death from complications of ALS. We called them into our bedroom and had a very open discussion with them. There was a lot of crying, mostly by me, but it lasted only about 15 minutes. We told them that barring a real miracle, I AM going to die as the disease continues to progress. We then asked them if they had questions or if they needed anything. It wasn't easy, but it went far better than I expected. I have no doubt that being open and honest about my illness was the right decision. Kids are a lot stronger and more resilient than we give them credit for. 11月14日 MDA's Quest Magazine Article Featuring Me?MDA's Quest Magazine contacted me back in June about my blog. I responded to several questions about my blogging habits, why I blog, etc. The article was just published, and I made the cut. Click the link below to see the article. As Dad always told me, "Even a blind hog finds a root every now and then".
Breathing and the BipapFriday, I visited the Pulmonologist and she told me my breathing has gotten significantly worse in the last 8 weeks. I went from 70% of the expected levels for someone my age, to 47%, during that 8 week period. I can tell that I'm not able to take deep breaths like I used to, but I can't really tell that much else has changed. I don't get out of breath, or wake up gasping for breath. Oh well, it's in God's hands.
Next week, I'll spend three days and nights in the hospital getting set up to use a bipap machine. I'll use the bipap only at night. The machine has a mask and will provide a constant flow of air and an additional burst of air when I'm taking a breath. I've read that when the machine is on, it's like breathing while you're sticking your head out the car window while driving 70 miles per hour. It should be interesting. 10月31日 Politics and Stem CellsI need to rant a bit. Is everyone else as sick of the negative political ads leading up to this year’s election as I am? Somehow, it seems worse this year. I am so frustrated by politics as usual. I find it ridiculous to assume that members of a particular political party all hold the same beliefs on issues like abortion and stem cells, which are intensely personal. For the record, I support expanding federal funding to include embryonic stem cell research using excess embryos that would otherwise be discarded. I am obviously biased, and agree with blogger Eric Earling, that asking someone suffering from an incurable disease like ALS what they think about expanding research is like asking the family of a murder victim what they think should be done with the accused perpetrator.
Political parties have backs to scratch. It frustrates me to no end that the Republican Party is so controlled by the religious right, that they choose to appease the religious right, rather than support the will of the people! I know it's naive to think this way, but I believe my elected officials are placed in office by the voters to fulfill the wishes of the voters! Given that over 70 percent of Americans believe the government should support stem cell research, I believe it was unethical for President Bush to veto a bill that passed the House and Senate just to appease the religious right. I consider myself a Republican and a member of the religious right, but I also have the ability and the right to think for myself. On an issue this important, that has the potential to save so many lives, I am pissed off that President Bush would go against the will of the majority of Americans and veto this bill.
Finally, don't let anyone tell you that embryonic stem cell research isn't likely to lead to cures for diseases like Alzheimer’s, Parkinson’s, Juvenile Diabetes, Duchenne' Dystrophy, spinal cord injuries, and ALS. In June, privately funded researchers successfully implanted stem cells into the spinal chords of paralyzed rats partially restoring motor nerve function. We need the US Government to assist stem cell research through public funding. I won't even go into the fact that other countries like England, Korea, and China, to name a few, are rapidly passing the US in terms of stem cell research technology. Allowing those countries to take the lead in cutting edge healthcare technology has significant economic implications for the US. Word! |
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