Dr. Appel Wore a Bright Polka-Dotted Bowtie Today

Day 2: Tuesday, June 29, 2010

What a day! Sometimes I think 2 1/2 days is not enough time to do the testing we need, get the questions answered and to see all the Dr.'s we need to see but it all has worked out and it was a very productive day. Starting at 8:15am, Peter had the Dr. of NeuroPsychology, Dr. Dulay administer a 2 1/2 hour test with the help of his PhD student from U of H that tested his cognitive faculties. I would have failed.....I was told to leave the room while the test was being administered. I was so thankful....you know me with tests....my stomach started to hurt, I started to sweat, I felt like I was about to take the SAT and I had to go to the bathroom and I wasn't even the one taking the test. I am so glad Peter is a wiz with all of that brain thinking stuff. Passed with flying colors.

Stephanie and Brittany (Steph's awesome friend) came to Methodist today for about 4 1/2 hours. Peter was so happy to see them both. It really lifted his spirits, as it did mine. It is amazing how the young adults can foster such energy and hope when they enter a room. It was fun having them here today with us and to eat lunch with them. We had a visit today from the Clinical Social Worker, Rebecca Axline...she was so personable and made us feel very relaxed. She talked to us for about 10 minutes, she was very helpful and accommodating.

Peter then met with another team member of Dr. Appel's, Sharon, Director of Clinical Research.....she took Peter through several tests like navigating a wheel chair, walking up and down the stairs, squeezing a grip machine, putting small items into a tiny pegged hole and adding a washer and a bolt, pinch tests and probably more but I forgot...the reason for these tests are to see where he is now and then when we come back in 3 months to see if he has stayed the same or slighly declined. They are measuring his efforts as well as his strength... Then Sharon lead us through the clinical trials Dr. Appel wants Peter to be apart of. Very informational and thorough. But before she could get done with the research behind these amazing studies, Dr. Appel arrived....

Dr. Appel wore a bright polka-dotted bowtie today. Came in with all his "people". He got to meet Stephanie and Brittany, of course. Dr. Appel put Peter through the exact strength test his chief Resident did yesterday. He is a very strong man, who knew. And I stand corrected he is not in his early 70's, he is 77. Amazing. Dr. Appel applied great force to Peter's joints and limbs with his body and asked Peter to resist him and then he gave his PA a rating from 1 to 5. 5, with 5.5 being the best. There must have been 40 to 45 different strength positions and out of those his chief Resident only got 1 wrong from yesterday.....I guess when you are taught from the best, you do the best.....

Then as the tests concluded, Dr. Appel turned to Peter and asked him if he had any questions....we are really on information overload so Peter didn't really have any at that time. Then he turned to me and asked me the same question, I asked him one question and he looked upset with me that I didn't have a list. So, needless to say, Dr. Appel gave me homework. I will have so many questions for him tomorrow he will wonder what hit him. He is a teacher of ALS and he wants his patients and their families to use and abuse him with questions so we can be knowledgeable in everything that ALS is, will become and what will happen in the future. Dr. Appel oozes with passion and determination for finding a cure for this disease. You see it the moment he walks into your room. He has built his practice on coming to the patients instead of his patients coming to him. Amazing......again I say it but it is so true. We are in the right place and I thank God that we live so close to the Medical Center.

Then it was time for Dr. Appel to move on to the next patient. We said good bye and I told him I would do better tomorrow and he said that he was counting on it. Just wait.....I thought to myself.

Then Sharon stayed to tell us about the clinical trials, and Peter is ready to sign up. We sign the papers tomorrow morning and he will begin in a couple of weeks. We were under the impression that Peter's blood would be inserted into healthy mice but that part of the testing has already been done. After very encouraging results from the testing in mice, five patients (4 men and 1 woman) have recently completed stage 1 of the clinical trial. Peter will be 1 of 12 people to participate in stage 2 of the clinical trial. Based on the encouraging results from stage 1, we are now going to try a revised combination of drugs that is designed to slow down the progression of ALS. This is very exciting for Peter and for all of us. So on we go to help find a cure for this horrible disease.....Peter will be the one to do this and we are so proud of him. We also found out today that patients with higher cholesterol and that have ALS do better than if they had lower cholesterol. So we have to rethink the Lipitor now....isn't that interesting.

Well I have said enough and I promised I would make this one shorter and I think this post is longer. We have 1/2 day tomorrow with the OT/PT visits and the Lawyer, and Pulmonary Specialist. Sounds like a full day to me. We are spent but well informed and ready to make our plan for the rest of our lives. We thank everyone for reading our blog and for your prayers, funny stories and just being interested in our lives. We hope you are all well and thank you for your love and support.

Love to all, DeeAnn