For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in

Topic Caution , caution is needed Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2014.12.09 10:29
I'm going to become a villain to some here again. I've tried not to comment about the thread on stem cells. Questions are being asked and I cannot in good conscience remain silent. Joe and Donna are good friends of mine. I even wrote a little about them in the commentary section on the site. "Joe, doors and Parkinson's disease. I hope things continue to go well with them. I pray that in 5 or 10 years We are all around and I'm writing again about Joe, something like Daniel Boone, Lewis and Clark, Davey Crockett and Joe, trailblazers all. This is my sincere hope.

Questions like why isn't this procedure available in the States? Why doesn't insurance pay for it? Back in the Bush administration (G.W's) when stem cells were conditionally released for study and research a University in Western N.Y. experimented with them in mice. The results were amazing! After introducing the cells all signs of the disease seemed to vanish quickly. People were shocked, then a few months later the project was aborted. Those same cells turned into tumors in the brains of the mice. I'm not an expert or even fluent in stem cells but I looked up online and found a question and answer from England talking about stem cells by a Dr. Rosemary Fricker, safety was cited as the stem cells showing the most potential are quite primitive cells whose main job is to make more cells. If these are put into the brain they form large tumors.

They use mice in labs because of the short life span so they can view generations in years instead of lifetimes then project this into human lifetimes and those months into years. Also they talked about dopamine producing cells transplanted 10 years ago into patients which now are showing hallmark signs of P.D. (lewy bodies in these now dying cells) So this isn't a cure the disease still progresses.

Caution cannot be stressed enough, I've talked about snake oil salesmen in the past and there are doctors that fit the category too. Red flags should be doctors changing, going from country to country to practice their craft. Reports or other negative stories online. Cash and carry operations. We need to be careful out there. Time needs to be used in these things they have to be followed over time to see if what looks like it works only in times falls apart or creates more and worse problems.

Again, I view Joe and Donna as my friends and pray for the best for them and you reading this. It was not easy to write this, heart wrenching in fact. MY sincere prayer is in 5 or 10 years all here can point at me and say Al your were wrong in this case. However I could not in good faith keep silent on this Joe and Donna I hope you understand. Take care, best of luck and hang in there

By jaxrock On 2014.12.10 07:43
Thank you for writing this!!!

By ResistanceFutil On 2014.12.10 17:39
Thanks, Al. While I'm happy to hear of a few successful antidotes, I hope the needed trials are pursued. Hopefully PD will be a thing of the past one day.

By VioletV On 2014.12.11 11:17
A single case study is just that.

It isn't science in that it doesn't predict others' experience.

A single case study includes all the many individual variables of one person--age, genetics, past treatments, social supports, diet, ethnicity, stress levels, toxic exposures or their lack--that together play a role in that individual person's experience.

But, we DO learn from the courage and commitment of those who try the unproven (in terms of scientific certainty) and unexplained. We learn new ways to think about these unsolved problems, and important signposts for systematic study.

I read the story of the stem cell treatment with excitement and interest, and recognized the joy that this couple must be feeling. I am personally glad the story was posted here, because along with the responses - both the enthusiastic inquiries and the sober cautions - we give each other the support to find our own individual paths through PD and all the other ills that accompany us on this one way journey.


© · Published by jAess Media · Privacy Policy & Terms of Use
Sponsorship Assistance for this website and Forum has been provided by
by people like you