An Update from Hex about his Wife

Hi Car been a long time since Klink days. Looks like your mag is doing very well. I wrote for one of your early issues but that seems to be another life ago.

I am Hex which is short for Hexaquad® and I started Ms chat in Klink's chat room in 1999. When Klinks went down I started my own chat room.

I am a caregiver and my wife has Ms for over 40 years. She is in an advanced state being mostly confined to bed with SPMs. We are fortunate that she can still spend some time in reclining wheelchair (one to two hours, twice a day). She has been relatively pain free which is a blessing. She was hospitalized twice this last year with hyperosmolar non ketotic, aspiration pneumonia and confusion. She left the hospital with inability to take in fluids as they ended up in lungs. It is noteworthy that folks don't normally die from Ms but rather from pneumonia. Therefore to fight Ms, we must try to avoid pneumonia.

My wife Jan had two Ms symptoms, in November 2003, that were most troubling. First she had advanced cognitive impairment and could not remember who she was, where she was and didn't recognize her own children. Second she could hardly talk and swallow as muscles in throat just not working correctly. An early sign of fluid in lungs is a light gurgling sound in throat. Ms'ers have trouble clearing fluids from lungs and this leads to pneumonia. I was sure her days were numbered and it was just a matter of waiting.

I was researching cholesterol under the assumption that the problem was not consumption but disposal when I happened upon some associated Ms research. It was noted that the autopsies on older Ms women showed a shortage of lecithin in their brain. Lecithin obtained from soya beans easily bypasses the blood brain barrier and acts to emulsify cholesterol, trans-fats etc. for disposal by the body. I decided to try it on Jan. We decided to try soy lecithin at 1,200 mg per day. Within days her cognitive impairment improved, she knew who she was, where she was and could carry on intelligent conservations. Everyone who knows her says they can't believe the change. In my opinion lecithin has pushed the the cognitive impairment to 1999 levels. It seemed to clear up swallowing troubles and she can take fluids. Both times she was hospitalized we stopped the lecithin as there is no research as to the interaction with other drugs. As a result the cognitive impairment returned but not as severe, and disappeared when lecithin was again administered. It is now over a year later and I still have my wife back and can't stop her from talking. I have noticed recently that some minor confusion has returned and I am not sure if this is Ms advancing or just old age.

In conclusion I don't know if lecithin has just given us more time or if it cured the cognitive impairment. My understanding is research is directed towards this drug which may answer what is the most beneficial dosage.

All the best

R. D. (Dick) Garneau the Hexaquad®

Reach Hex by email to comment: dgarneau@telusplanet.net

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