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Brian's Video - Ataxia Patient Experience Print E-mail
Ataxia
Thursday, 04 December 2008 09:21


Brian MacNeill, 38, United Kingdom

Cerebellar Hereditary Ataxia (SCA1)

Check out Brian's video on Vimeo here or by playing the video below.

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Reason for Coming for Treatment

Brian and his family are very familiar with Ataxia having watched it claim over 30 lives in the past 150 years. Brian’s immediate family has been particularly hard hit with all four siblings and their mother carrying the hereditary condition. Ataxia is an “orphaned” condition, to use the pharmaceutical industry term for any condition not meriting research. There is no medication for it. But for Brian and his family, Ataxia is a real disease with significant quality-of-life impairments.

With two children of his own—and a 50% chance of passing the condition to them—Brian saw it as his responsibility to do everything he could for them and for future generations with the condition. Brian came to China for adult stem cell transplants in 2006 and again in 2007.

Treatment During First Visit

One IV and three spinal umbilical cord stem cell transplants with nerve growth factor. Acupuncture, wave and physical therapy.


Condition After First Treatment

Brian states that his speech improved considerably the day after his second stem cell transplant and first spinal transplant. His “nervousness and shakiness had completely gone and [his] energy levels had increased dramatically.” He credits the significant improvement in his balance to the “intense therapy everyday.”

He can now “kick a ball” around with his son again and enjoys the stability to ride a bicycle again.

Ten months after coming to China Brian noticed his voice beginning to slur again—and not due to time spent in the pub. He decided to return to China for another round of transplants hoping that he would see the improvements he had seen the first time around.

Treatment During Second Visit

Two IVs and four spinal umbilical cord stem cell transplants with nerve growth factor. No physical therapy.

Condition After Second Treatment

Brian tells us that he chose to fore-go physical therapy, against doctors’ recommendations, during his second visit because he was already living an active lifestyle and hoped he would see improvement regardless. Brian quickly saw his voice improve and “the little bit of nervousness and shaking had gone again. My energy levels had got a little better, although not as much as the 1st time when I had the therapy.”

Brian wishes the therapy did not have to involve a trip around the world. For his family’s sake we hope it will be available closer to home soon. He feels confident in his own condition today saying “I know what to do.”

Last Updated on Monday, 10 October 2011 10:46
 

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