Today I was able to get copies of William's neurologist's comments from 4/01 to compare with her comments from 10/99. Most were about the same.
Some changes were:
10/99: On the retropulsion pull test, the patient would fall if not caught.
4/01: Retropulsion pull test is normal.
10/99: There is mild to moderate rigidity in both arms.
4/01: There is no rigidity on exam today.
10/99: He cannot fully protrude his tongue.
4/01: He cannot keep his tongue fully protruded for 5 sec.
William is taking part in an HD-neuropsychological research project for the Huntington's Study Group at a Medical Center. And has been for 3 1/2 years. It had actually been 1 1/2 years since he had his last testing (3 hours worth). We recently got the analysis. Of the five areas analyzed, william has NO deficit in 2: Vocabulary/Language and Visual/Spacial. In the area of "Attention", he has Moderate impairment and NO CHANGE in a year and a half. (!) In the area of "Abstraction/Problem Solving" Steve has Moderate impairment with NO CHANGE in a year and a half. In the area of "Memory", Steve has Mild impairment with "slight decline in a year and a half.!
It's been almost 8 months since William started taking OmegaBrite. The improved walking gait and motor control are stable and strong. William has NOT FALLEN in 5 months. He WAS falling about once a week. His neurologist was very surprised last week at the change in his walking. William feels better about himself. He had not taken a bath in fourteen (!) months and in April he started bathing again (w/my help). He feels better about himself and said recently: "I am so proud..." and "I am so happy..." (that I am not falling). So our quality of life has definitly improved!
Changes noted on March 30 keep accelerating. Walking sometimes near "normal" with well over 100 smooth steps before a little "stutter". William went through a stage of denial about getting better but now has accepted and seems incredulous over the positive changes: he can write, walk, and do stairs better, and he drops things less. He is more mentally alert. The black cloud has disappeared -- we are high on life!!
It has been about 2 weeks shy of 4 months that William has been taking 6 OmegaBrite capsules/day. He also added 2.1 grams of Creatine 4 weeks ago. Over the last few weeks, I have noticed a few changes: (1) I date and file the notes William writes to me. His writing is more clear, smaller, less messy. (2) His walking has been awkward and jerky; he is now able to walk 14 or so steps in a smooth, normal gait, then a bit jerky and then smooth again. I don't remember him walking with a smooth gait at all for a long time. (3) he is choking less frequently.