Health Watch: ALS Stem Cell PatientUpdated: Monday, 07 Mar 2011, 11:39 PM EST
Published : Monday, 07 Mar 2011, 6:02 PM EST
There's also a video if you go their website
http://www.myfoxatlanta.com/dpp/news/health-watch-als-stem-cell-patient-030711
By: BETH GALVIN/myfoxatlanta
ATLANTA - It's been four and a half months since John Conley underwent a high-risk, experimental procedure. Conley allowed Emory surgeons to open up his spinal cord and inject it with fetal stem cells. Conley has ALS, a disease that is gradually shutting down his muscles, but he's become a symbol of hope for people around the world living with the disease.
This ALS trial has gained a huge amount of attention from around the world.
If doctors can prove the surgery, and the stem cells are safe and effective, it could offer hope to thousands of patients facing this disease.
In the meantime, John Conley says it's given him hope and recently as he recovered he was matched with a helpmate who will be by his side, whatever comes.
Conley says he took one look into Dalton's big, adoring eyes, and knew he had buddy.
"He loves me, thank goodness," said Conley. "He sat there in front of me put his paws on my lap and that was it. We were mates."
The 18-month-old golden-lab service dog from the non-profit Canine Assistants has been trained to perform up to 90 tasks for Conley.
"I got him now because I have some difficulty with things, and as time progresses, you know, you lose more abilities," Conley said.
You can look at him and think he looks pretty good. And a lot of people actually say that. They're like, 'Well, he looks fine. What could be wrong with him?'" said Conley's wife, Sandy.
Conley's many little losses are adding up.
Back in October, Conley could still walk with a cane, but was beginning to lose strength in his legs.
Four months later, Conley said he's lost more strength.
"I've lost more strength in my arms," said Conley.
Conley's legs are so weak, he needs a walker.
"They've gotten much worse to where I don't trust myself even walking on them," said Conley. "I've lost the muscle tone, I've lost the strength."
Knowing ALS will gradually shut down his muscles, in October Conley took a huge gamble on an unproven surgery.
The day before his 59th birthday, he underwent a breakthrough stem cell transplant at Emory University Hospital.
"They don't know what the correct dosage is, they don't know where they should really be injecting the cells," said Conley.
Conley was the first person in the early stages of ALS, and only the seventh in the U.S., to undergo a delicate and dangerous operation to open up his spinal cord and inject it with hundreds of thousands of fetal nerve cells.
"It was kind of strange watching yourself on the video seeing your own spinal cord, and someone injecting stem cells into it. That was probably the freakiest part of the whole thing," said Conley.
Neurologist Dr. Jonathan Glass, the trial's lead researcher, says they've now performed ten stem cell surgeries so far none of the patients has had a major complication.
"We don't know if it's going to work. But the only way we can test whether it's going to work, is to know whether it is safe. You never want to hurt anybody that you're trying to help," said Dr. Glass.
Because this is a Phase I, or a safety trial, Conley and the others have no guarantee the stem cells will offer them any benefit.
"But they wouldn't be doing it if they didn't have some kind of hope, or results elsewhere," said Conley.
"I think of all the trials, this was, this is the best of the best," said Sandy Conley.
Four months after his operation, Conley thinks about the risks. "I don't think it was a big risk," he said. I've had a lot of people say that: "It was a tremendous sacrifice you made." And I say, 'No, it's not a tremendous sacrifice. It was a tremendous opportunity, it's a gift.' And I still believe that."
Conley said he can't tell if the stem cells he got have made a difference, but he's hopeful.
"A lot of people wonder what their 15 minutes of fame will be and little did I know it would be acquiring ALS., because it's given me the chance to be a source of strength and hope for some people," Conley said.
Conley says he would love to live long enough to see something good come out of this trial, but for now, he'll have to settle for living well.
"You just have to live your life. This some how makes you live it a little more [full]. You appreciate the leaves on the trees, the birds, the sounds, the sunshine. You appreciate everything, a little bit more," Conley said.
The Emory team will perform 12 more surgeries like Conley's and then they will submit their findings to the Food and Drug Administration.
If the FDA determines it safe to keep going, they will do six more surgeries, this time, injecting stem cells into the patients' upper spinal cord, which is considered more risky. Conley said he's had no problems, and has no regrets.
Published : Monday, 07 Mar 2011, 6:02 PM EST
There's also a video if you go their website
http://www.myfoxatlanta.com/dpp/news/health-watch-als-stem-cell-patient-030711
By: BETH GALVIN/myfoxatlanta
ATLANTA - It's been four and a half months since John Conley underwent a high-risk, experimental procedure. Conley allowed Emory surgeons to open up his spinal cord and inject it with fetal stem cells. Conley has ALS, a disease that is gradually shutting down his muscles, but he's become a symbol of hope for people around the world living with the disease.
This ALS trial has gained a huge amount of attention from around the world.
If doctors can prove the surgery, and the stem cells are safe and effective, it could offer hope to thousands of patients facing this disease.
In the meantime, John Conley says it's given him hope and recently as he recovered he was matched with a helpmate who will be by his side, whatever comes.
Conley says he took one look into Dalton's big, adoring eyes, and knew he had buddy.
"He loves me, thank goodness," said Conley. "He sat there in front of me put his paws on my lap and that was it. We were mates."
The 18-month-old golden-lab service dog from the non-profit Canine Assistants has been trained to perform up to 90 tasks for Conley.
"I got him now because I have some difficulty with things, and as time progresses, you know, you lose more abilities," Conley said.
You can look at him and think he looks pretty good. And a lot of people actually say that. They're like, 'Well, he looks fine. What could be wrong with him?'" said Conley's wife, Sandy.
Conley's many little losses are adding up.
Back in October, Conley could still walk with a cane, but was beginning to lose strength in his legs.
Four months later, Conley said he's lost more strength.
"I've lost more strength in my arms," said Conley.
Conley's legs are so weak, he needs a walker.
"They've gotten much worse to where I don't trust myself even walking on them," said Conley. "I've lost the muscle tone, I've lost the strength."
Knowing ALS will gradually shut down his muscles, in October Conley took a huge gamble on an unproven surgery.
The day before his 59th birthday, he underwent a breakthrough stem cell transplant at Emory University Hospital.
"They don't know what the correct dosage is, they don't know where they should really be injecting the cells," said Conley.
Conley was the first person in the early stages of ALS, and only the seventh in the U.S., to undergo a delicate and dangerous operation to open up his spinal cord and inject it with hundreds of thousands of fetal nerve cells.
"It was kind of strange watching yourself on the video seeing your own spinal cord, and someone injecting stem cells into it. That was probably the freakiest part of the whole thing," said Conley.
Neurologist Dr. Jonathan Glass, the trial's lead researcher, says they've now performed ten stem cell surgeries so far none of the patients has had a major complication.
"We don't know if it's going to work. But the only way we can test whether it's going to work, is to know whether it is safe. You never want to hurt anybody that you're trying to help," said Dr. Glass.
Because this is a Phase I, or a safety trial, Conley and the others have no guarantee the stem cells will offer them any benefit.
"But they wouldn't be doing it if they didn't have some kind of hope, or results elsewhere," said Conley.
"I think of all the trials, this was, this is the best of the best," said Sandy Conley.
Four months after his operation, Conley thinks about the risks. "I don't think it was a big risk," he said. I've had a lot of people say that: "It was a tremendous sacrifice you made." And I say, 'No, it's not a tremendous sacrifice. It was a tremendous opportunity, it's a gift.' And I still believe that."
Conley said he can't tell if the stem cells he got have made a difference, but he's hopeful.
"A lot of people wonder what their 15 minutes of fame will be and little did I know it would be acquiring ALS., because it's given me the chance to be a source of strength and hope for some people," Conley said.
Conley says he would love to live long enough to see something good come out of this trial, but for now, he'll have to settle for living well.
"You just have to live your life. This some how makes you live it a little more [full]. You appreciate the leaves on the trees, the birds, the sounds, the sunshine. You appreciate everything, a little bit more," Conley said.
The Emory team will perform 12 more surgeries like Conley's and then they will submit their findings to the Food and Drug Administration.
If the FDA determines it safe to keep going, they will do six more surgeries, this time, injecting stem cells into the patients' upper spinal cord, which is considered more risky. Conley said he's had no problems, and has no regrets.