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Bill, July 22, 2007
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GLYCONUTRITION AND LBD
 
We arrived in Fort Myers, Florida April 28, 2007.  At that time Bil was walking with very short shuffle steps.  He was able to navigate our daughter, Karen's, house and go up and down the stairs without assistance.  Within two weeks, he had deteriorated to the point he could no longer walk any distance.  We were using a scooter to take him outside to Doctor visits and other appointments.  He could only walk four or five short steps before he would stutter step and lose control of walking.
 
On May 11, I signed him up for Hope Hospice care as he was deteriorating so rapidly.   May 14, 2007 equipment was delivered by Hope Hospice.  A wheelchair was included.  That was the last time Bill used the scooter.
 
On May 14,  Karen and I took him to the Neurologist and he had difficulty managing the scooter.  The wheelchair was delivered after we returned from the Neurologist.
 
By May 19, Bill was unable to walk even with assistance.  I was still able to transfer him to the wheelchair.  We went to a Health Fair in Naples where we were introduced to a new concept in nutrition therapy called GLYCONUTRITION.
 
GLYCONUTRITION is the replacement of the 8 essential sugars to restore health.   The eight essential sugars are: 
1.  Glucose,  2.  Galactose,  3.  Fucose,  4.  Mannose,  5.  Xylose,  6.  N-Acetyl-neuraminic acid,  7.  N-Acetyl-glucosamine,   8.   N-Acetyl-galactosamine.    These eight sugars form monosaccharide chains that are attached to protein molecules on the surface of the cells of the body.   The monosaccharides attached to the proteins are called glycoproteins.  These glycoproteins are the communication links between the cells of the body.  When there is a lack of the essential sugars, the communication between the cells is compromised and disease begins.
 
By replacing the sugars, the body is able to repair the cells and restore the body to health.   For more information on GLYCONUTRITION,  go to  www.glycoscience.org. 
 
 I started Bill on Glyconutrition May 22, 2007.   Within the first two weeks, he was walking with assistance, and picking up his feet.  He got to where he would take 3-4 running steps when he used the walker.   He was able to use the walker, where before, he could not figure out the process of using the walker.
 
Bill was eating and drinking better after starting glyconutrients.
 
We were able to take Bill to the beach, to church, and to physical therapy.  He was doing very well.  He tired easily.
We had him in the swimming pool for a few minutes one day.
 
 Almost immediately after starting Glyconutrition, Bill began having spontaneous BM.  Prior to this for several months he has had severe constipation.
 
We had a family reunion June 6-13.. From June 3 to June 20, at least one of our daughters and her family were here with us.  After that, there was at least one of the girls here to help me out.  Bill did very well during the time of the family reunion.  He was able to walk using the walker.  He went outside with the family to eat.  He went on outings in the car.  With two assistants he was able to get up and down the stairs and into the car. 
 
June 30, 2007,  Bill was able to walk most of the day.
 
July 1, we took Bill to church, then went out to lunch with Mike and Karen and kids and Kris.  Bill was tired and rested when we got home.  On Monday, Bill had Physical Therapy and was too, tired to do very much.  PT again on Thursday and he did fair.  We went home after PT.
 
With Lewy Body Dementia, there is a lot of drooling which can also cause coughing during sleep when the head may be tilted back more than forward.  Bill had severe drooling at times and would many times tend to cough at night.  July 6th, he began coughing spasms and I gave him cough medicine and  very small doses of Ativan, an antianxiety medication.  These did help some, but the coughing spasms continued even with repeated doses of  Ativan and Robitussin.  Sunday evening, July 8, I called Hospice and the nurse came by and started Atropine drops, which controlled the cough. 
 
Bill was totally exhausted by this time, and eating very little.  About all he ate some days was the Glyconutrients and small amounts of water.  He got to where he could no longer stand, even with assistance. 
 
Monday July 9, we were able to stand him up after he had rested throughout the night.  He was unable to walk and would try to scissors walk, crossing his feet at the ankles.  He started talking and chattering.  Many many small hallucinations.  "Oh, look at the pheasants and deer.  Aren't they beautiful."  "You almost ran over my disc!"  "Did you turn off the gas?"   I have to go check the ranch."
 
Hallucinations are frequently part of the Lewy Body Dementia experience.   They can be mild and insignificant; they can be frightening, or they can cause the person to act out the hallucinations by going outside inth middle of the night.  Many times they may relate to a person's prior experiences at a younger age.  They may see people they know, or they may see strangers.  It may be enemies or friends.
 
By Wednesday he was not talking as much, remained very weak and was jittery.   He continued to walk ,with 2 assistants, a very small distance with the scissor walk again crossing his lgs at the ankles,making it difficult for him to take a step.
 
By Friday July 13, he could no longer stand, even with asstance.  At that time I increased the dose of Glyconutrients.  by 2/3.   After the second dose, we could stand him to transfer to the chair.  This morning, Saturday, we were able to walk him to the bathroom.  He walked with feet straight ahead of him, not crossing at the ankles.  He ate fair today.  Speech was minimal and very weak.
 
Bill remains very weak and very Ill.  When I helped him to transfer the the chair, he felt very light.  He had weighed about 205# when we were in Texas, but had lost weight down to about 168# when I took him to the doctor here in Fort Myers.   We are in the process of taking just one day at a time and working with Bill to the extent of his ability.
 
We will continue the Glyconutrients as long as Bill will take them.   Glyconutrition is not an overnight cure.  It is a very slow process of  repairing the cells, so that the cells can repair the body.  Glyconutrion is non-toxic.  There is no toxic dose.  At this time I feel that  we have to keep Bill going for six months to a year before we really know how well it is going to work, because he is in such a deteriorated condition.