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9/28/00 The Charlotte Trip From:
Rob Payne <rob@everydayisprecious.com> We're back from the Charlotte doctor trip. We each went secretly hoping the doctors there would tell us Marcy doesn't have ALS. That didn't happen. Something much better did. In the 2 days there, we saw nine health care specialists - the neurologist and leader of the center, a pulmonary doctor, respiratory therapist, nutritionist, physical therapist, occupational therapist, speech therapist, internist, and social worker. Each was scheduled to spend half an hour to an hour with us, telling us all the ways his or her area of specialty could help as the disease progresses. For example, the occupational therapist has a machine that has an infra red eye that watches your eye movement and moves a cursor on a computer screen the same speed and direction your eyes move. When ALS patients lose dexterity to the point they can't control a mouse, this device allows the patient to continue using a computer. One of our doctors' patients, Joe Martin, a chief executive of Bank of America, has written the book "On Any Given Day" using this device. Instead of giving us his/her speech, each health care professional listened to Marcy's recovery story and was uplifted. Two of the people actually said "We don't ever get to hear about people getting better." Our last session Wednesday was supposed to be a wrap up of the two days where the neurologist compiles all the information from his team and tells us the findings. Instead, he performed some of the same EMG tests performed by the Nashville neurologists. He said he was looking for something they might have missed. I had the feeling that after reports from his team, he didn't believe that Marcy has ALS. When we finally did get to the wrap up, the doctor told us that there is evidence that Marcy does have classic, clinical ALS but that it is definitely a "different shade of ALS, one that he's never seen." He said that it is very rare that symptoms are reversed to the degree that Marcy's have. That many patients tell him they feel better, but very few have actual functions return to normal as Marcy has. He said that no patient of his has ever taken as aggressive an approach in attitude and action as Marcy has and that it has obviously paid off. He said there's no scientific explanation for her progress and that he wants to study Marcy and Marcy's progress. He asked her permission (which she granted) to take blood and to perform quantitative physical tests to measure Marcy's current strength to serve as a baseline. He would like to perform the same tests later to document her progress. For now, he suggested we continue what we are doing. He does want Marcy to gain weight - or at least not lose any more weight. We are to report to him any changes we see. But better than the physical experience is the spiritual boost the trip to Charlotte gave us. We knew going into it that it didn't really matter what the doctors said, Marcy is getting better. We knew that it would be depressing seeing and hearing all the bad things that can happen as the disease progresses - and that fear was realized - it took a lot of strength and courage for Marcy to fight off the negative vibes from the environment. So, we wondered why we were being led to Charlotte. We discovered two reasons. First, as bad as it is to say this, in the eight years we've been married, Marcy and I have never prayed together. We (or one of the kids) say a blessing at dinner, but Marcy and I have never talked to God together. We did on this trip. We started a habit that we will continue. Tuesday night, after the first day of tests and doctor visits, after getting back to the hotel and doing the wet cell treatment and massage, we went out to dinner and a movie. The movie was in a new, 22 screen, stadium seating cineplex. We were the only two people in our theater. We got to our seats 20 minutes before the movie started and started talking. At first it was the usual conversation, but it led to our telling each other some very private things about how we pray individually and talking about each other's core beliefs. Things we both knew in our hearts about each other but had never talked about. For me, it was the best part of the trip. The second reason for coming to Charlotte was revealed the second (and last) day of our visit. We realized that if Marcy's progress is so amazing to the medical community, if we share what God has done with her, it may help others that are in the same or similar condition. We realized that this may be one way we can help others with this disease - we have to share Marcy's story and some of the details of where we've been led. We're still working on just how to do this, but we now have the mission. At the risk of making this long email even longer, I want to thank you for your thoughts and prayers. It has been, and continues to be, a major part of this blessing. We won't be sending these emails every week as we've been doing. The NC doctors want to see Marcy once a quarter to measure progress. We may do that, we may go less frequently. We will email you when there is something to say and we would like you to continue to keep us in your thoughts and prayers. But if your prayer time is limited, there are many others with greater needs than ours. Thanks again. We'll keep in touch and we'll keep you in our prayers. Rob |