henry's condition is worsening and his abilitities are decreasing daily. speech is greatly impaired, he is unable to walk almost completely. he is not able to feed himself at all or sit up unsupported. I can not say there has been any improvemnt with either the EPA or the CoEnzymeQq10 any longer maybe it is only working in the early stages?
since the doc put him on the lorazapam he not choking as much anymore and he is not having as many movements, we had to make a choice of either all the movements and choking or relaxed and able to swallow but is more warbly and prone to falls more as he is very high and very happy lol on this new med schedule.
we took the high over horrible choking and cumbersome movemnents. as far as EPA is he still takes it every day and vitamin E too but i havent seen any change with either of them but he has been talking better so maybe the epa is responsible there and he keeps asking about getting a license and driving again lately oh boy here we go again lol....so thats all for now but oh yes we just heard his daughter may have HD and she has been tested only yesterday she is 28 and says she is showing symtoms and is convinced for sure she has it. maybe but we pray not but will hopefully find out in couple of weeks.
I too am going for the test monday 3/5/2001 so wish me luck too i am 47 but am worried and so are my sons so we are all hoping both of uswill be ok . god bless all of us.
P.S. Anna, and all as far as weight gaining and healthy ways are concerned, the theory is still up to five thousand calories per day for HD pts. and suposedly the new thoughts that more weight or extra weight is actually better becuse it aid with decreased movements and slows desease progression per harvard and Boston now a days. One solution is to use extra calorie ensure shakes as we do.
under the C.A.P program here NC. they pay for henry's ensure of 3 cans four times a day which comes to about 16 cases of ensure each month and they even deliver it. as henry hasn't been eating anything but the ensure since they statred to bring it he has consistently gained weight including extra weight he never had before and he is two sized larger than before lmost three and he loves the shakes in all flavors excpet the chocolate, but his favorites are starwberry and butter pecan hmmmmm, my kids will even drink one once in awhile if they have no time to eat as they run out of the house ...CAP is program that is federally funded for terminally ill pts to be able to maintain them in thier own homes as long as possible and when they have less than a year to live then hospice takes over, you all should check into your local social services offices and ask them about this program to aid you caost of ensure and diapers and chux and even in home aids to bath and feed your loved ones to give you a break each week .
they also will help to get beds and wheelchairs and other equipment to make life
eaisier as well so i hope this helps you all as well as it has our family see ya
nurse charlie here
Henry has been on coezyme q-10 for 4 yrs, now and he takes haladol,zyprexia,amatyptaline,for about three years now. when we began coenzyme q-10 he could not walk any longer with in a month he began to walk once more. as of jan 2001 he is on fish oil. 2000mg. (360mg/epa & 240/dha) 2 caps per day. spring valley co. but also have puritan pride's now on hand becuse we can buy 2 and get 3 free when we order 2 of most of thier products including coenzyme q-10 as well buy 2 get 3 free totals 5 bottles for the price of 2 not bad and can order on line or have catalog sent and they deliver to your door no chasing and if you need to return no problem they are fast and reliable have had to return a product i had alergic prob and they credited my card back quickly and never a question or refusual. have been dealing with them now for last two years for all supplements and vitmins. you all might want to consider them as an alternative to save funds too. same does of two caps equals same amount of epa and dha but i paid for one bottle at walmart and got none free so bought 2 got 3 free so had five but also can buy 1 get one free better deal in buys of 2 for the 3 free we think. anyways, henry has no improvemnt yet too soon and not sure but think maybe this is a good thing, he was able to have a bowel movement with out aid as in enima, and it was not as hard and so he was not in pain or distress. if its the epa we are happy as constipation form non movement or walking is a problem for the bowels to funtion correctly and it too needs to be addressed so maybe its an added benifit to have softer stools becuse he gets at least 5000 calories per day fronm ther plus ensure in three cans 4 times a day. it can be very hard on his bowels as he no longer can eat he also has to take 2 different over the counter softenrs and fiber capsules too for this problem and prescrition colace to aid but will let you know how it turns out if it continues to help this area as well as any improvements too. all the usual symptoms like choking lots and barely walking these days upright, to falling more than we want to see and injuries always from falls and bangs into and over things alot. barey is able to be understood by my his 9 year caregiver and we spend 24 hours aday together so its getting harder to talk with him but we keep trying. he also began to sleep alot more in the last month instead of just at night he now sleeps at night and most of the day as well staying up only about 5-7 hr. per day in his recliner says he is tired. well that his history and stage at this time will keep you posted and please lets all keep each other in our prayers and thoughts and good luck to you all as well .