I received a call from Denny, all excited, he had heard about a medical research facility that could maybe help him. He had heard from a friend who had a similar diseases and after going to this facility he was feeling stronger and better. Denny called them and told them all about what was going on with him and can they help. They set him up for the appointment; the facility was in Columbus OH. Diana and Denny drove there the night before and stayed in the hotel. Denny holding on to some hope that maybe, just maybe there was some help. Only to go in for his appointment for the doctor to be reading over his chart and as she was reading down the chart saying “I don’t see that you have ALS but reading this” Denny’s heart just stopped and the jaw hits the floor. And in Denny’s words, he was extremely angry for the wasted trip and getting a glimpse of some hope, the words he used, sorry can’t print here. The thought of “What?” comes to mind. But as the doctor continues to read down the chart of all the test “Oh yes I see you have been seeing Dr. ???, and if he says that is what it is then that is what it is”. “But we are sorry Denny we can not help you here for ALS. Because there is no cure for this and we do not”. “The research comes to us once in a while.”
Denny explains that, “I told you this all over the phone that I had ALS”.
“I am sorry there must have been some kind of misunderstanding. I won’t charge you for your visit due to the misunderstanding, but I will tell you there is no medication out there FDA approved that can help you.” The FDA approved one medicine that out of the 20% of the people that actually took the medication only 20% of them lived 3 months longer.
In Denny’s words: “I feel that the FDA approves what they want to approve, how do you like them odds? I feel that if it was one of their own, things would be different.” So heart in hand and hopes crushed yet again, Denny and Diana went home knowing what they already pretty much knew. I don’t know how many of you saw the story of “Jenifer” who also had ALS, died Dec 16, 2003. There was a lifetime movie of her life. She and her sisters are the founders of Project A.L.S. web site http://www.projectals.org/. But the point I wanted to make with this that if you saw the movie. You could see some of the cold, heartless medical personnel, and how they react to people with this disease. I am not saying that there are not some wonderful people out there who do understand and have a heart. I will never give up hope; someone out there has to find a cure. Medical science can create a disease to kill the world and make a vaccine against it. We can spend billions on this; we spend billions on cancer research and again no cures. Makes you wonder where the priority of our government lies; with killing or healing?” Denny has a few choice words of his own, but we will save this for the book. Wait till you get a load of that.
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