Amy Adams Gowan's Blog
"I might have had a tough break, but I have an awful lot to live for." Lou Gehrig, July 4, 1939Archive for October, 2010
In fairness to the opponents
Watch the last video regarding Mr. Conley. At the end, a priest is giving his and the Catholic Church’s views on embryonic stem cell research. I respect their doctrine that life begins as a cell (does make for an interesting evolution argument J), but disagree that a life in existence is worth less than a cell/embryo that is not viable and will be discarded. It is a moral and personal issue for each individual and I will let the Big Man upstairs judge me and all my sins, along with everyone else. I pass no judgment!
http://www.myfoxatlanta.com/dpp/news/inside-the-or-for-a-stem-cell-transplant-102810
Also, below is a link to a story about some progress stem cells derived from skin cells are showing in the lab. It is research going on at Harvard. If successful, this may remove ethical arguments regarding embryonic stem cells. As stated before, within reason, I don’t care where the stem cells come from, just got a few more things to do on my bucket list.
http://www.myfoxatlanta.com/dpp/health/Study-Shows-Progress-With-Stem-Cell-Alternative_45467329
Mr. John Conley update – incredible
He is up and walking – watch his interview post-surgery
http://www.myfoxatlanta.com/dpp/news/inside-the-or-for-a-stem-cell-transplant-102810
He and I have been playing phone tag. What a prince of a guy….
John Conley – ALS Stem Cell Trial in Atlanta
http://www.myfoxatlanta.com/dpp/news/inside-the-or-for-a-stem-cell-transplant-102810
http://www.myfoxatlanta.com/dpp/news/health-watch-stem-cell-trial-101810
http://www.myfoxatlanta.com/dpp/health/stem-cell-surgery-emory-20101020-es
An actual person doing stem cell in Atlanta
You never know where the connection will be and who will help you in a time of need. This week, friend and former mortgages teacher, Steve Davis, contacted Robert regarding a relative of one of his co-workers diagnosed with ALS. Jonathan Conley lives here and his wife works in the Trust Department at Nashville Bank and Trust with Steve.
Jonathan’s Dad, John Conley, received the stem cell transplant through his lumbar region at EmoryUniversity in Atlanta on Wednesday, October 20. He is 59 yrs old, a vibrant man, and was walking with the assistance of a cane prior to the surgery. I talked to Jonathan on Tuesday and again by email on Thursday. The Atlanta news is closely following his Dad and so am I! Jonathan said it would be ok to share his story, so I’ve included the links below.
Jonathan is probably in or en route to Atlanta to see his Dad as I type this entry. He and Mr. Conley have graciously agreed to keep in touch and keep me posted on Mr. Conley’s condition. This is still part of the safety Phase I of the trial and only 12 – 18 will be included. They have no promise of any results, including a therapeutic dose. It is because of brave men like Mr. Conley that all of us with ALS will benefit and continue to have hope. If and when they start another phase, we will closely monitor and decide if I might be a candidate for the clinical trial. Realistically, it’s still a minimum of 1 ½ yrs away. I pray that I hang on that long to know the benefits, that all of these Phase I participants survive, and that I get to participate in the next Phase if safe and beneficial.
Ceftriaxone Clincal Trial
I have now passed my 6 months of being on IV ceftriaxone. I am still administering it myself at home twice/day, 30 minutes per dose. The supplies alone are over-whelming. It is not hard to do but it takes organization (not always my strong suit) and patience (definitely not my strong suit). As no one knows how each individual with ALS is going to progress, the researchers have no way of knowing whether it has slowed progression unless you outlive the 5 yr prognosis of death. Even then, they’re not sure whether this drug has slowed progression. Again, 10% of the people with ALS outlive the 5 yr diagnosis.
I have progressed since starting the trial. My difficulty in my legs/walking is significant. I have some weakness in my abdominal muscles, but other than that am doing well. Unfortunately I fell about a month ago while walking with my “razor scooter” walker, and severely sprained my left ankle (my good leg). I’ve kicked and screamed into riding the power chair (named Duke after John Wayne), but it has helped me continue working and doing the activities I like to do.
My ankle is much better, so with some good bracing, I plan to get back using my razor scooter.
Stem Cell revisited
Ok, so after I went off on my soapbox/tirade about stem cell research being banned, the Court was reversed. Also, I learned even more about stem cell research and would love for others to be educated. I am certainly not a resource, but I can tell you a “dummy version” of it.
First and foremost, I cast no judgment on people that believe it is a sin, abortion, and/or disagree with embryonic stem cell research in general. I respectfully disagree, and for the mere fact of being an attorney, I do want to hear more of this side to possibly understand the comparison to abortion. One of the most compelling bits of information to me was a friend who had done in vitro fertilization five years ago, got pregnant, and did not need the remaining embryos that were presumably in frozen storage. She and her husband asked what could be done with them, basically, could they donate them for research, and were told no. They would become biohazard waste.
A huge waste that is! Just a few embryonic stem cells, I think, provide hundreds of stem cell lines. I would be happy with whatever kind of stem cells I could get if they would stop or slow progression or God willing, reverse my nerve damage/muscle atrophy. They could be autogulous (mine), a relative/donor’s, fetal cell from umbilical cords, or embryonic. I want to qualify the embryonic stem cells – I would be horrified/not use embryonic stem cells as a result of an abortion or without permission of the donor period.
The thought is that embryonic stem cell lines have not been programmed as to what kind of tissue they will become. Adult stem cell lines have already determined what kind of tissue they will be and to date, there has been no progress in them becoming new motor neurons and tissue. There is a POSSIBILITY that embryonic stem cells can be directed towards new motor neurons. However, it may not be an answer nor work. I have to focus on the possibility without being delusional. This is what gives me hope.
For the life of me, literally, I don’t see how an embryo that is not capable of surviving and will be discarded is worth more to be discarded than saving my life, and literally thousands of other moms, dads, sisters, brothers, sons, daughters that have motor neuron diseases including Alzheimers, diabetes, cancer, etc. We are about to embark on an epidemic of Alzheimers from baby boomers in this country. Please educate yourselves and others AND CALL YOUR CONGRESSMAN!
Walk to Defeat ALS
http://web.alsa.org/site/TR?pg=team&fr_id=6462&team_id=184375
Go to this link and see for yourself what my amazing husband, Robert, friends and family have done for the walk in Nashville, October 30. If you haven’t signed up, join in the party!
It all started with Aunt Alta and Uncle Jim Simpson in Memphis. They started Team Amy. We had a great team and walk on a beautiful Fall Day in Memphis on October 9. Tina Reynolds brought in the Autozone posse and it was a euphoric day. If you don’t know Aunt Alta, I will say with some prejudice that she is one, if not the best, realtor in Memphis. She and mentor Will Griffin, Sr. are responsible for unleashing me as a real estate attorney. Both were out in full support of me as they have been for 44+ and 25+ years respectively. All so humbling and I am so thankful for all the family and friends that keep me going in this journey.
Amy Adams Gowan's Blog 