By Allan Gardiner, PhotoMed Technologies, Founder
Huntington's disease (Link to Wikipedia) is a neurodegenerative genetic disorder that affects muscle coordination, mental faculties, and behavioral symptoms. About 30,000 have the disease.
I was pleased to read the descriptions by Norman Doidge, MD about using electrical stimulation of the tongue to improve coordination lost to stroke and injury. Insights from his stories prompted me to re-examine data from two volunteers with effects from Huntington's disease.
Vaguely similar to his stories for stroke, we observed a reduction in choreic movements, improved coordination of swallowing and gait. Our observations challenged the notion that Huntington's decay trajectory cannot be significantly delayed or improved. A second case, less dramatic than the first, found that gait could be improved and maintained with therapy for over a year.
The first volunteer, a middle-aged male, presented with bursts of choreic mouth excursions, swallowing and speech difficulties, and gait problems. He lived in a group care home for assistance including eating due to shaking and poor coordination. During family interviews, I learned that he was not aware of the choreic motions at the time they occurred - similar to the non-awareness of a person who has a limp.
The man achieved truly unexpected success within minutes of receiving PhotoMed Technologies experimental therapy. His rate of choreic bursts declined during the treatment session along with improved swallowing coordination and gait. Before and after video interviews, and anniversary interviews, were taken with his family in a relaxed setting to learn about his experiences through a family perspective.
The results after his first session were memorable because he was able to smoke and talk at the same time in an outdoors interview, drop and catch a lit cigarette, and speak more clearly. Reduced choreic mouth movements were maintained until his participation ended more than 3 years later. By the end of his participation, other functions deteriorated in spite of an increased frequency of treatment visits.
Figure 1 - spontaneous mouth motion identified from representative 12 minute sections of family interviews. (Click image to enlarge.)
At the first anniversary interview, a family member recalled going out to dinner to a buffet restaurant after the first visit. He was able to carry his tray and feed himself small cut portions. His family recalled how his abilities improved sufficiently for him to move out of the group home to live independently and to interact more with his children and grandchildren. His general health declined over the period but he continued to live independently with assistance. His mental faculties declined, but was still able to tell jokes at his final interview.
These dry facts do not convey the joy shared during his family interviews or narratives taken during sessions.
This case exemplifies the need for additional patient-centered studies that record many facets of recovery as the body struggles to maintain balance and wellness.
Please contact Allan Gardiner for additional information.
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Updted: April 2, 2017
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