When our older brother got sick in the early 1980's, the way of thinking was that a trache, ventilator and feeding tube were temporary. Through his death we have learned that these life saving devices are not temporary for people who have Duchenne Muscular Dystrophy. Karl was next to start having problems. When he got his trache we knew that it wasn't temporary. A few months after getting his trache, while on a trip he started suffering from lack of oxygen. When we got him home our parents started calling around to get information about ventilators. Not knowing about portable ventilators, they thought he would be confined to bed hooked up to one of those huge machines like they use in hospitals. Then someone called and told them about portable ventilators. The ventilators can run on 12 volts, so they can be carried on our wheelchairs which are equipped with a carrier and a battery. Because this was 1982 portable ventilators were very rare. The doctors let Troy decide when to get his trache and ventilator. So in 1984 Troy got his trache fairly routinely. He got his trache before he was in total respiratory failure. If it wasn't for these wonderful mechanical devices we would have died twenty years ago. Just before we got traches and ventilators we had to struggle for every breath. When we started using ventilators it was like someone taking a pillow off our faces.

The progress of our muscle robbing disease has weakened the muscles involved in swallowing to the point that we can no longer eat by mouth. Troy was Aspirating and getting pneumonia frequently. The doctors suggested for Troy to get a feeding tube. So in 1997 he made the decision to go ahead and get it. A few months later Karl got a peace of ham stuck in his esophagus and could not eat or drink for two days. He went to the hospital to get the peace of ham taken out, also because he was dehydrated. While in the hospital he got a swallowing test and found that he was aspirating. Since he was already in the hospital they decided to go ahead and put in a feeding tube. In the beginning not eating real food bothered us a lot. We would be lying if we said now it doesn't bother us at all. It is a lot easier to handle now than it was before. Both of us were very skinny and probably not very healthy. After getting our feeding tubes both of us gained some very much needed weight. Another positive aspect about it is that we can drink beer a lot faster and without swallowing.

Although we have many difficulties, we still manage to get out and enjoy life. Our van is equipped with a lift, wheelchair tie downs and plugs for our ventilators and suction machines. All of these devices make things quite a bit easier. Of course it's still a little more difficult for us to go places. We enjoy going to the beach girl watching or to a park to ride around looking at wild life.We also enjoy walking our dog Henry. We're both dog lovers, we recently got a 10 week old Yellow Lab named Duffy. Another thing we like to do is go watch our dad fly radio controlled airplanes. Our hobby used to be flying model airplanes, but our disease robbed that from us. We spend a lot of time working with our computer. We have software that is designed for disabled people such as ourselves. It's called a keyboard emulator. We can do all the same things with one feather touch switch that you can do on a regular keyboard.

Believe it or not we are still happy most of the time. We don't dwell on what we don't have or what we can't do, but on what we do have and what we can do. Our motto has always been to never give up. We're thankful just to be able to think, operate our computer or operate our wheelchairs. Our family and friends are big factors in our mostly positive attitudes. Having a sense of humor has helped us through some of the hard times in our lives. First and far most our faith in God keeps us focused. Without our faith we couldn't be as happy as we are. We're thankful for the many blessings we've had in our lives. We hope that by writing this we can encourage others.

Karl and Troy enjoy their lives and I find contact with them encouraging. I hope other readers especially families and those with DMD find their story enlightening.