‘I’m kind of living in the moment’

Stem cell therapy in China helps a Big Island Parkinson's patient reinvigorate her life

By Helen Altonn
Honolulu Star-Bulletin
haltonn@starbulletin.com
http://starbulletin.com/2007/03/29/news/story05.html

A Big Island woman who had stem cell surgery last May in Beijing for Parkinson's disease is among those amazed at her transformation.

"I just don't realize it at times because I'm kind of living in the moment ... dealing with what's right in front of me," Captain Cook resident Penny Thomas said.

Three million stem cells were planted in the 53-year-old woman's brain last May at the Tiantan Puhua Neurosurgical Hospital.

The stem cells were provided by the Stem Cell Research Center at Beijing University from a donor's retina.

Thomas had advanced Parkinson's disease, a disorder that occurs when certain nerve cells in the brain that produce dopamine malfunction or die. Dopamine is a chemical responsible for the body's movements.

"I was watching myself die," she told the Star-Bulletin in October. Her husband, Robert, and their daughter, then 15, had to help her do almost everything, she said.

The stem cell therapy gave her life back, she said.

Thomas resumed swimming and spent five weeks in December and January cross-country skiing, sledding and doing "other winter fun things" in Pagosa Springs, Colo.

"I adjusted quite well to the 8,000-foot elevation. I didn't push myself too much, but had a lot of fun," she said.

She lived 20 years in the Pagosa Springs area and has family living there, she said. Her daughter, Cheyenne, now 16, goes to school there.

In October, Thomas visited friends in the Midwest and went horseback riding during a week in Colorado.

"I'm feeling really well," she said, noting she used to take three different medications. She now takes only Sinimet, used to increase dopamine levels in the brain, and it has been reduced to 200 milligrams per day from 800, she said.

She is also taking amino acids with an herb called macuna pruriens that makes dopamine naturally.

She is working with Drs. Clif Arrington and Alan Phalli on the amino acid program.

"I can't believe she's been so active," Arrington said. "She's doing surprisingly well. She's reducing her medication and is still maintaining without any reoccurrence of the Parkinson's symptoms."

Since she is backing off of the medicines, Thomas said, "Once in a while I develop tremors in my right hand, but I adjust amino acids with macuna and it balances out fine."

"Eventually the implanted stem cells will take over and produce enough dopamine on their own," Arrington said.

Doctors in Beijing want her to return in May or June for a scan so they can see how the stem cells are doing, she said. However, she probably will have the scan in Honolulu, she said.

She was the first American to have the treatment for Parkinson's, the Beijing hospital said. The cost for the surgery and a two-month stay in China was $26,000, she said.

"It's something that has helped me tremendously," she said, "and hopefully it will help other people, too."

Anyone got a spare $26 000 ?

What Peg had done, a retinal cell transplant, not a "stem cell transplant"! And what's this about mucuna pruriens "making dopamine naturally? Mucuna IS a crude mixture of L-dopa and it's transformation to dopamine is no more "natural" than the transformation of L-dopa in sinemet into dopamine. The dopa decarboxylase enzyme works on both substrates because they are the same molecule ! And I've said it before, mucuna is not as good as sinemet because it does not contain the ingredient that inhibits the transformation of dopa to dopamine outside of the brain. Before there were such "peripheral decarboxylase enzyme inhibitors", the drug was marketed as "Laradopa", which is just sinemet without the carbidopa PDE inhibitor. THis gave lots more side effects because dopamine is, like the closely related tyramine, a heart stimulant, and not to be present in high concentrations outside the brain.
I'm sure that most of us have heard about the "cheese effect", that is , when a person is given a monoamine-A oxidase inhibitor (the first kind of effective antidepressants) if they eat food high in tyrosine (an amino acid), peripheral decarboxylase enzymes produce too much tyramine, and a very unpleasant syndrome ensues. This is also why they warn us not to take more than 10mg of Selegiline or 2mg of Azilect/ day, because these drugs which are selective monoamine-B inhibitors (allow more dopamine from being broken down in the brain synapses where it is needed) into a monoamine -A inhibitor which can cause a "cheese effect" like result.
Getting off topic here, but my point is that retinal cells have been shown to become dopamine producers when transplanted to the substantia nigral area of the brainstem. Somehow these cells obey an "order" to morph into dopamine producers, but at this point we don't know how efficient they are at doing this. Real "stem cells" which can be bioengineered to be even closer to real nigral neurons, which are what we need. THis CAN BE DONE! This is what we are all waiting for. WHY DON"T THE LITTLE DOGGIES JUST GIT ALONG AND DO IT.
PLEASE, give us PWP a break and get on with the right surgical intervention experiments. cs

Actually $26,000 sounds inexpensive by American standards. A family can spend half of that to come to Disney World and go on the accompanying cruise.

This is what we can expect I'm afraid, for quite some time. Treatments for the rich...and left behind will be treatments that could have saved people for lack of profit.

paula

Interview with Penny:

http://www.stemcellschina.com/content/view/205/15/

It would've been good if we had footage of her beforehand in an off state eg a sinemet challenge test, twelve hrs without meds then filmed.
I have reservations about her degree of wellness post implantation.
Personally I couldn't really see much difference afterwards.
The tremor and akinesia were both present pre and post implant.
Perhaps the improvement was the lesioning effect like pallidotomy pts used to get for a while post operativey?
Anyway I sincerely hope it is a breakthrough despite my scepticism.
Thanks Carolyn for posting that and Olc's and Zucchiniflower, your info too.
Cheers,
Lee

All the claims of surgical help for PWP have amounted to a handful of dimes. I judge stories of PWP helped tremendously by a certain procedure with a grain of salt. Just think of it like this; when penicillin was first discovered, it showed to do the job of killing a certain ytpe of bacteria, which thousands upon thousands of people were very quickly "cured" of their infections. The pharmaceutical industry was born, and a huge effort was made to produce enough of this wonder drug, this "magic bullet", to save lives. And vaccines; look at their history, as soon as the principal was dicovered, great effort went into application of the theory to produce many vacines that save countless lives.
Whenever the research community comes up with something big, something that REALLY works, time is not wasted in implementation of the results. I am so sceptical of ANY stories that we hear about "great leaps in the treatment of PD", simply because there have been only a few drugs developed in the last century that are mere palliatives, and no "cure" for PD is in sight. It just isn't. Just ask our resident super searcher (Zuccini flower) what all the millions of words that she has read about PD point to in the direction of a real cure. The reason that there is no cure is partly that we are mired in a silly battle to use certain human derived cells for experimentation, and partly because everything that rsearchers have done so far just plain doesn't work. If one researcher came up with a drug or surgical protocol that actually significantly "healed" the condition of PD, it would catch on fire and be repeated by thousands of researchers to prove the science and effectively produce a population of PWP from all walks of life, that had been "effectively cured" by the procedures.
There are MILLIONS of people worlwide with brain conditions that could very well yield to the transplant of bioengineered cells into their brains. That we don't see anything that works well, is totally reproducable, and is as simple and cheap as possible is not the fault of researchers, it is the fault of a disease that has not given up it's secrets easily. When the day comes when a forward thinking, well financed, research body comes up with the "magic bullets" that we need to stop our symptoms, we'll hear about it, el pronto.
Me, I'm tired of waiting, but there is nothing else to do but wait. There is an answer to everything that is physical and dysfunctional, all we need is to seriously look for it. I wish that my brain were at a capacity to design and implement many experiments, based totally on the tenets of modern neuroscience, without interference from anyone. Therin lies "our" cure.
WE are moving much too slowly, and not anywhere near agressively enough to see the cure for PD in our lifetime. BUt one fine day, peopel with parkinsons everywhere will be able to say in hindsight "that's all it needed to cure PD", I wonder why they didn't come up with that sooner.
And one last thought, the people of the world are quick to offer up their beautiful sons and daughters to the slaughter of war and the tryanny of despots with armies that only bolster the idea that human life is cheap, so, with that as a background to the noble idea of lessening human suffering, we see that maybe , just maybe, nobody wants to invest in a "cure for us", that in fact PD is a first world money making proposition, and that's all it is. I'm sorry if I'm so pessimistic, but that's what I see in my crystal ball. cs

I read about all the new "miracle cures" and I have to smile....(it beats crying). We do not know what causes PD, nor the sequence of events that our brain goes through with PD.
We do not even know why DBS works.
A genetic cure is years away according to the researchers I have talked to, and their are no drugs on the horizon that promise anything but symptom relief. Nothing has been proven to be neuro-protective, much less a possiblity of a cure. The only thing Ihave seen that MIGHT hold promise is GDNF and we know all about that debacle.
So I keep my fingers crossed, but do not see anything happening in a 10-20 year time frame, at least.

Sorry but thats the situation as I See it.

Charlie

however I am not so pessimistic and we are moving forwards.

Gene therapy in the form of Ceregene and Neurologix are each at Phase two with Oxford Biomedica kicking off another gene therapy trial shortly. GDNF lives on through Ceregene's MJFF part sponsored trial.

Cell replacement therapy in the form of Spheramine is at IIb and has been fast tracked by the FDA.

We are getting closer to understanding the role of the alpha-synuclein protein in PD.

None of the above includes any work regarding stem cell research, (see http://news.bbc.co.uk/1/hi/health/6517645.stm "Heart valve grown from stem cells" where the surgeon said "doctors could be using artificially grown heart components in transplants within three years"). Once we get the economic and commercial might of the US behind this technology (which already seems to be happening in California and the New York state) who knows what will happen.

All the time new approaches to existing treatments, (e.g. Duodopa and improvements in DBS) will keep us going until something larger comes along.

I don't live in some drug induced fantasy world where all is great but surely if we have no hope then what is the point of anything.

Neil.