Are you familiar with a well-disguised demon named "CJD" (Creutzfeldt-Jakob Disease)??
The horror of CJD is two-fold. First, most people have never heard of CJD. When someone begins having neurological problems involving balance/coordination, personality/behavioral changes, fearfulness, loss of memory, visual problems and insomnia, endless neurological tests are performed . The end results of these extensive tests are negative. However, something is seriously wrong and the neurological problems/symptoms increase and it is the beginning of the end. Secondly , when diagnosis of CJD is confirmed by either brain biopsy or cebrospinal fluid tests, there is nothing under God's heaven that can save the victim. Their complete central nervous system is shutting down and they are trapped inside their own body with their death being the only means of release. From that moment on, if God is merciful, their suffering is not prolonged.
As I took each step with my husband, JD, in his CJD illness, I watched my life also coming to an end because he was my life. And when there was no hope, I put it in God's hands. I gave our burden to Him and asked Him to do the best thing for JD. God took my husband home where he could walk, talk, smile, laugh, swallow, turn over and eat again.
I can't help my husband anymore but have committed myself to offer my support and help to others who are presently taking the walk through hell with a CJD victim ... or have a loved one with puzzling neurological symptoms the doctors cannot identify, so indicative of CJD, or simply other "survivors" who, like myself, are trying to put their lives back together. This is my story of an angel, named JD Campbell, sent to earth on July 28, 1932 to be a servant of God and to eventually meet, fall in love with and marry Dolly Byrd on May 9, 1984. The marriage was like a fantasy... wonderful in every way until CJD began to rear it's ugly head and began destroying JD and eventually took him from me on Tuesday, March 18, 1997 at 10:45 pm. Please walk with me through an encounter with the most horrifying disease known to mankind.
JD never met a stranger and was a very loving and outgoing individual, always kind and considerate of others. Raised on a farm, times were so hard that he was allowed only one pair of shoes each year. Dedicated to serving both God and his country, JD joined the US Army and became a telecommunications operator. Early in his life, his intelligence, personality and determination lead to his successful business which grew beyond his wildest dreams. He developed a formula for making sweeping compound and his business was eventually purchased by a large competitor.
With a strong belief in serving people, JD became a candidate for sheriff in our county and based his campaign on experience with people, honesty and integrity. He also possessed unusually strong mechanical skills and could build and repair anything.
He was a handsome man... gray hair with crystal clear blue eyes, 6' tall with a deep voice that roared like a lion. But inside this man was the heart of a teddy bear... gentle, kind, loving... always putting others first. He was my wonderful husband who gave many years of love and happiness to me. He was my best friend, my lover, my husband and soul mate and my love and devotion for him will never die. I know that God will reunite us one day.
I have used some curse words said by JD in this story and have been very explicit in detail to hopefully help researchers and medical personnel under stand how horrible CJD is and how drastically it can change a person. I hope I have not offended anyone by doing this.
To begin, I want to say that we all have our good and bad days. So, there may have been earlier times when we simply did not realize a change in our loved ones who were falling victim to CJD.
The beginning of my walk, down the CJD pathway with JD, was July 1995 when we drove to Yadkin County where some of JD's family was buried. Our van began making unusual sounds and ordinarily JD would have returned home. Instead, he kept driving till the van was smoking, overheating and finally stopped. In a strange area, we walked about 3 miles to a house in Yadkinville owned by a Mr. & Mrs. Royall and we called a friend to come get us. The van's transmission had fallen out and it was unusual for JD to continue driving the van with mechanical problems because he had spent many years working on cars.
On October 2 ,1995, JD had successful quintuple bypass surgery. He had no option to the surgery because his arteries were so terrible blocked. He was given no blood transfusions. When we returned home, our 13 year old cat, Squeaker, would only sit and stare at him. I would pick her up and put her on his lap... she would just smell him and jump down and stare again. Squeaker had always loved JD but she knew something was wrong with him.
In March 1996, JD complained of weakness in his legs from the knees down. I noticed slight tremors in his right arm/hand. Coordination/balance problems were beginning and he started swaying like he was drunk and began holding on to me for balance. He complained of flu-like symptoms. His eye surgeon had him scheduled for a cataract removal but that procedure was stopped because his eyeball was soft and was perforated.
During the latter part of this month, I experienced the most frightening thing ever... JD's personality began to be like Dr. Jekyll/Mr. Hyde with hallucinations. One night, he was totally out of control behaving like a wild man. He put pistol to my head, accused me of having an affair and said he was going to shoot me. Then he laughed and told me not to ever tell anyone about what he did to me. He had NEVER acted this way towards me. He also showed fearfulness and we would walk the house every night checking windows and doors to be sure they were locked.
During April - May, he constantly complained to cardiologist about his medicines blaming them for his problems. He blamed eye surgeon for vision problems and we began monthly visit to him. He would close one eye trying to focus on TV.
His balance/walking/coordination problems increased. When we walked, he would place one foot right directly in front of the other and I was expecting him to trip.
He didn't want Squeaker around him. He began cursing...a habit that he despised. When we went to bed, he was having trouble getting settled and then would constantly sleep and wake up all night.
Very erratic personality changes were occurring... one day he was my old JD... the next day a stranger filled with hate and aggressive behavior. On the bad days, he was forever harassing me. There was another frightening experience on April 28th... more accusations from him. When I contradicted him, he acted like nothing had ever been said. "Mr. Hyde" always appeared at sundown and near the latter part of month ...usually on a Sunday. There were "dark side" days and he was starting to frighten me...something I had never felt before. I kept trying to figure out what was happening to him.
He became obsessed with constantly watching me He took me to work and then rode by or came in the office several times each day. Sometimes I would simply look up from my desk and he would be at my window staring at me. He continued this off-and-on until the day I quit my job in August 1996.
In May - June, his walking, balance and tremors became worse. I was now helping him out of his chair and balancing him on his feet. He would not stand flat-footed but would roll back on his heels. When I asked him to come forward fully on his feet , he began to topple forwards. He also began stooping over at the waist and when I told him this he didn't realize it and wanted me to straighten him up. There was increasing dementia and declining mechanical skills. The cardiologist recommended an MRI but he refused because of claustrophobia and also refused to be referred to a neurologist.
He developed breathing problems and said this was from bypass surgery. He complained about his eyesight and asked eye surgeon to try cataract removal again. He also went to his gastroenterologist complaining of gastrointestinal problems.
I began to "chart" his aggressive behavior/ personality change/nervousness. Full moons were the worst. His handwriting ability was starting to decrease. He was becoming very tensed up, easily agitated and was losing interest in sex. He blamed me for not being able to function. He would honestly shake so badly that he could not keep any part of his body still.
In June - July, his breathing problems got increasingly worse. I would lay awake at night listening to him breathe and when he stopped; I would check for his pulse and then climb on him straddling his body, put my arms under his back ribs and lift him up off the bed. After doing this once or twice, he would "catch" his breath and begin breathing. He attributed this to his bypass surgery affects. I would stay awake all night listening to him breath... afraid that if I did not stay awake at night, he would stop breathing and die. As time went by, he resented me asking him to go to the doctor, insisted nothing was wrong with him and told me it was my imagination and there was something wrong with me.
He complained of being tired and started to lose interest in the things we enjoyed doing together. He was always quite talented mechanically but was losing this ability. When the motor burned out on my treadmill in 1994, he knew exactly what to do and replaced the whole motor with no directions. When it burned out again in 1996, he started taking the motor apart and he looked at me and said... " Babe, what do I do?"
He was having trouble with driving and would first slam on brakes and then floor the accelerator when he started off from a standstill. One evening, he was backing the car in the garage and floored the accelerator literally backing into the garage, itself. The garage was damaged but he didn't care and never got it repaired.
Eye surgeon set up another cataract surgery for June 19th that was successful. He still blamed me for sexual dysfunction while I was unsuccessfully trying to revive his interest. He would make accusations to me and go into a rage raising his hand to strike me.
On his good days, he told me how much he loved me and that I was the only thing that mattered to him. His balance and ability to stand were becoming worse and when I tried to get him up out of his chair, he would react with an opposite resistance. He pulled back with his hands on the chair arms... and did not understand that he needed to push down with his arms to raise himself up and stand on his own weight. I began to lift him from the chair with my arms behind him and try to maintain his balance (and mine) while I had him upright. That was not easy for me because he was 6' and weighed 200 pounds. Nevertheless, I would try until I got him up.
In July-August, the doctor visits increased and they could find nothing wrong but he asked them for medicine. One doctor gave him a thyroid test which was negative.
He was taking relaxers to help him keep calm. I learned to look at his eyes and tell when he was "changing." He would sit and talk with me for hours and then suddenly stop talking and stare into space. It was my "signal" and when I said something to him, he would snap my head off. Then he would say.. " better go get my medicine... I need it" . After he took it, his old self would return. But, this personality change became more frequent and I was afraid I would never get my old JD back.
He increased the harassment and in August 96, he walked into my office and told me I would have to make a choice... either him or my job. I was totally shocked and asked if we would discuss it later. His eyes filled with hate and he went into a rage. He refused to wait until I got off from work and repeated his statement again. I started crying and agreed to quit. I turned in my resignation on August 19th. He refused to let me work a 2-week notice.
When I quit work, he stopped driving and I drove. He began telling me that I drove too fast, followed too closely, waited too late to apply brakes and turned corners too sharply. To him, everything I did was wrong .
When I would put Squeaker on his lap... he would throw her on the floor saying that she scratched him. She just sat on the carpet and looked up at him with a tremendous hurt in her eyes. He had never treated her like that before. His handwriting was getting worse and he asked me to sign things for him so he would not have to.
He would not let me leave the house without him.. not even to go to the mailbox. When we would go out to eat, he would be jealous of any male friends of ours who spoke to me. While trying to get him up from his chair one night, we both fell on the floor. He became frustrated and grabbed for a pistol beside his chair before I realized it. He pointed at me and said "to hell with it" . I asked him to put the gun down and I pushed the gun to the floor. He cursed me and told me to give him the gun back. I told him that he was not going to shoot either himself or me. I believe he was going to shoot me and then himself that night.
In August-September, he continued seeing doctors... the cardiologist finally convinced him to see a neurologist... and that was Dr. Edward Hill. The first appointment was on 9/16 and he turned out to be a true Godsend. JD continued to progress downhill and Dr. Hill began seeing him every 2 weeks. When he asked JD questions, JD would not tell him what was wrong. So I began to try and tell Dr. Hill and JD said... "who is seeing the doctor, you or me?" From that time on, Dr. Hill began running every conceivable test on JD to find out what was going wrong with JD.
He had increasing insomnia, sexual dysfunction, and became lax about personal hygiene, and developed a strange faint body odor... almost oily like. Then, very suddenly, he became obsessed with sex and wanted to make love every night and was having increasing difficulty performing yet blamed me for his problem. He became extremely frustrated with himself and I would try to calm him down. Each night, I would almost dread going to bed because I knew he would try to make love to me and that he could not function. He would literally vibrate in bed and could not relax. We were both frustrated and I remember the last time, he became agitated and accused me of changing. I told him we would try again when we were both more relaxed. Prior to his sickness, he had always been very gentle and loving and would snuggle with me and hold me ever so tightly.
I tried to keep doing one of his favorites... eating out. One particular episode at a seafood place in Statesville was terrible. JD ordered his fish, ate it and then said it was not what he ordered. When we got up to leave, he asked to see the owner and really made a nasty scene. The fish was what he had ordered. He stood in the restaurant and argued with the owner for 30 minutes. I simply did not know what to do... I was afraid to say anything to him for fear I would anger him more. I simply waited and prayed.
He was becoming increasingly argumentative. I tried to keep peace with him as much as possible, but the slightest thing I said to him triggered the aggression. He was like a time bomb waiting to go off. When he did become aggressive with me he would lash out at me verbally. I would leave the room, go to our bathroom, sit on the commode lid and cry my eyes out while praying to God to help us and make things like they used to be.
I was beginning to believe that JD truly hated me and I could not understand why. I asked God if it was me... if I had changed and to help me understand what I was doing wrong. What I did not know until the latter part of January 1997, was that it was not JD who hated me.. it was Creutzfeldt-Jakob Disease.
Any activity was becoming increasingly more difficult. Trips to the bathroom were becoming a major effort. I helped him to the bathroom and eased him down on the commode because he could not stand by himself. Bowel movements were becoming more difficult because of constipation.
One night while we were getting for bed and he was sitting on the left side. I crawled across from my side to his, reached my arms around him from behind and hugged him. He flew into a rage jerked around and yelled at me "what the hell do you think you are doing?" I said... " JD, I was just hugging you the way I have so many times before." He just glared at me and said... "don't you ever do that again... ever." I got off the bed, went in the bathroom and cried. I simply could not understand what was going on because JD had always loved for me to hug and touch him.
In October - November, he started falling more often... I would stay right with him in case he started to fall. If I had to go to the bathroom, I would put him one place and ask him to stay there until I returned from using the bathroom. I would hear a sound and rush back to find him on the floor. He just did not realize he could not do these things anymore.
One day, we went out to rake leaves from the ditch in front of our house. I was going to get in the ditch and rake the leaves up on the yard so we could pick them up. He insisted on getting in the ditch and fell and I tried to get him up. I reached out to pull him up but my shoes slipped from slick soles and wet leaves. I fell and asked him if he was OK and he just laughed and said "yes." He said " I wonder who saw us making out in the ditch!!"
After we had gone to bed one night, I told him that I had to get up to use the bathroom. When I returned to enter our bedroom, I heard "FREEZE!!!" and glanced around to see the barrel of the pistol reflected by a nightlight. He had the gun pointed at me and I immediately hit the floor and told him it was me and to put the gun down. He said... " I SAID FREEZE, DAMN-IT!!" I told him again that it was me and to put the gun down. I finally convinced him and he said that he didn't know who I was at the time.
One day, we were working on the leaf vacuum and JD could not even remove a screw without shaking very badly. I held his hand and we removed the screw together. He wanted to bolt a new piece on the vacuum and could not hold a drill still and could not put in screws. I crawled inside the leaf vacuum trailer to do the work while he watched from outside.
I would stay awake at nights listening to him breath and wonder what was going wrong with him and our world. I had the feeling I was losing him and kept praying to God to help us. Most nights he would not sleep unless I gave him medicine to relax him. One night the lamp was on and I noticed he had this smile on his face. I said... " JD, what is it?" He said... "don't you see them?" I said, "see who." He said "the angels all around us" ...and he was just smiling. I cried all night.
His speech was starting to become slurred and sloppy. On October 22nd, he fell on our porch and on October 31st, he fell in our garage. On October 28th, Dr. Hill had an MRI done on JD... I went in the room to be with him while it was done so that I could comfort him and he would not feel alone and be afraid. He did fine and I was so proud of him. The results were negative for a stroke or tumor. On November 3rd, we had a flu shot and I noticed his voice was fading.
He was getting progressively worse and developed problems chewing his favorite Red Man tobacco. He was also having trouble sitting a cup down flat on a table. His eating habits which were always meticulous, were becoming increasingly sloppy. My heart was breaking. I watched him struggle to eat his favorite chicken stew and he would tremble while trying to hold the spoon. It finally became a monumental task for us to move around the house. It would take us 20 minutes to get to the bathroom. To help him to the car and get in, to get into a restaurant and eat and then get back into the car and into our home became an exhausting ordeal for JD. He was physically exhausted by the time we got into the restaurant but he still would not give up going. By the time we got back into our home, he was totally exhausted and would often take a nap. By this time, his mobility decreased to using a cane with me helping him balance. Before long, it progressed to using a walker with me helping him.. and the final days of his mobility were by wheelchair.
I would cry while watching him struggle to do things that were once so easy for him. Chewing tobacco, putting on his clothes, going to the bathroom, shaving, taking a shower, combing his hair, and our favorite... making love. Our days were spent to get her working hand-in-hand to make things easier for him. I tried to do everything I could for him and stick right with him. He fell in the house several times in November. Once I heard him rustling around in the bed and he tried to get up. I asked him what was wrong and he said he was going to the bathroom . I tried to help but he refused and when he got to our bedroom door, he fell backwards into a basket of flowers on the carpeted floor. I jumped up to help him and he blamed me for making him fall.
We decided to work on the lawn tractor and change the blades and he put them on upside down. I noticed the blades were gapping the yard and showed him. I told him that I believed the blades were on upside down. At first, he said no... but then decided we would look and see. I took the deck off the mower myself because he no longer had the strength to do it and saw the blades were on upside down. He asked me to put them on correctly.
I put up a card table in the living room for us to eat on and would cut up his food in very small bites and hand feed him. He would stop and ask me to go get my food so we could eat together.
I can remember during one visit to Dr. Hill, he gave JD three words to remember... he could not recall them about 5 minutes later.
At this point, he had developed the majority of CJD symptoms... personality/behavioral changes, hallucinations, fearfulness, myoclonus (muscle twitching/jerking), nervous/jumpy feelings, visual problems, changes in walking, ataxia (loss of coordination/s tumbling/falling), sleeplessness, anxiety, tension, memory loss, and hoarseness...the beginning of speech loss.
He was sitting on our deck one sunny afternoon and I asked him if he wanted a glass of ginger ale. I gave it to him (in a plastic cup) and he looked in it and said... "there are bugs in it." I told him there were no bugs... he said, "you put bugs in here." I repeated myself and drank some of the ginger ale to prove it.
We were invited to a friend's home for Thanksgiving dinner. It was wonderful of our friends to ask and I thought the visit would be good for JD. They were shocked when they saw me helping him get out of the car and walk. Once we sat down, he never moved the entire time. When we left, our friend's son helped me get JD to the car... we had to totally support him. They told me later on how shocked they were at his condition.
When I gave him medicine on schedule, he would usually keep fairly calm but most nights were hellacious. One night after getting him in bed, I leaned over him to kiss him goodnight. He flew into a rage and pulled back his hand making a fist and threatened to hit me in the face. Instead he grabbed my gold heart necklace and broke it. I just sat on the floor beside the bed and cried. I told him that he broke the necklace he had given me. He didn't say anything.
Dr. Hill kept checking him for every possible neurological disease and initially diagnosed peripheral neuropathy. There were so many blood tests done as well as other tests.. but nothing showed anything to be wrong. On November 29th, JD fell again. On his "good days" he would hug me and tell that I was the only thing important in his life - and that I was his life. Those were wonderful days!!
During December, he would fall asleep in the recliner and I would have to awaken him so he could take his medicine and go to bed. One particular night, I woke him, lifted him up out of the chair and, helped him to bed. I was now dressing and undressing him. He fell asleep while I went to get his medicine. I had on his blue sweat pants and a blue sweatshirt that I constantly wore. I stood at the bedside side and told him I had his medicines ready. When he opened his eyes he had that "look" and asked me who I was. At first, I thought he was joking and reminded him that I went to get his medicine. He refused to take it and again asked me who I was. I said, "don't you know who I am?" He said, "no, who are you?" I said, "JD - its Dolly, your wife." He said, " no you're Dolly... what did you do with Dolly... I love her and I want her." I kept telling him it was me... Dolly. Still not realizing the seriousness of this, I said, "oh we took her to the garage". He went into a rage. He reached for the pistol he always kept on the nightstand and raised it towards my head. I grabbed it and pushed his hand down and managed to get the pistol away from him and hid it. I said, "JD... this is Dolly... look... here's my rings, my watch, and my bracelet". I even smiled and showed him my teeth because he always said what pretty teeth I had. He still did not know who I was. He said, " you're not my Dolly... where is she... what did you do with her... I want her back.. she is all I have and I love her." I finally asked him to watch me... I would show him that I was Dolly. I stood before him and removed every piece of clothing until I was stark naked in front of him. He looked me up and down... and had a smile on his face. I said, "do you know who I am now???" He said... "yes, you are my Dolly and I love you. Give me a hug!!"
He always loved to sit outside and we would enjoy that time together. The days were getting cool and we would sit inside the garage doorway . One day I was trying to think of some way to put a smile on his face. I put on a tape of "Do You Love Me" and danced in front of him. He started laughing and told me how much he enjoyed my dancing.
We took showers together and I supported him from behind while we stood on a rubber mat. He loved me washing him and I reminded him to hold on to the rails. I did not know it at the time, but one of the showers would be our last together forever.
We were sitting in the living room one evening and JD asked me what I wanted for Christmas. I sat down on the floor in front of his chair and said "the best Christmas gift you could ever give me is for us to get you well again." He smiled and said, "we can do that together, Babe."
He began putting on too much after-shave and was losing his sense of smell. He finally lost interest in taking a shower so I would bathe him myself using soapy water to wash him. He lost complete interest in personal hygiene. He tried to smoke his pipe and could not keep it lit. I would light it and smoke it and then put it in his mouth. One day, he said... " just keep it, Babe." He finally gave up chewing tobacco because he was so frustrated about making a mess and I told him not to worry about the mess. He was developing slight swallowing problems and I was really afraid he would accidentally swallow the juice and get strangled.
On December 3rd, Dr. Hill admitted him to the hospital for plasmaphoresis treatments and I stayed with him. We came home on Saturday, the 7th. Dr. Hill gave us a prescription for a walker with rollers. Initially, this seemed to help.... but he kept getting worse. Results from a spinal tap revealed a minimal elevation in protein.
One night in bed, I heard him making sounds like he was blowing air through his mouth. He was also swatting in the air with his arms and hands. I asked him what he was doing and he said, "I am swatting and blowing at the flies." There were no flies.
I called Dr. Hill and updated him on JD. During this time, JD would periodically have an elevated temperature. On December 16th, Dr. Hill admitted him again for treatment. I stayed with him again and we returned home on the 20th. Diagnosis this time was rapidly progressive peripheral neuropathy. There was no improvement. During a December office visit to Dr. Hill, I finally gave Dr. Hill some notes I had written about the changes in JD and symptoms he had. When I was writing these notes down at home, JD kept asking me why I was writing notes down for his "psychiatrist" . For the very first time, I told Dr. Hill about the gun episodes. Prior to this, I was very afraid that if JD knew I told Dr. Hill about his symptoms and the guns, JD would go into a rage and shoot me. He had a pistol in his pocket at the time of this visit to Dr. Hill. I asked the nurse to let me talk with Dr. Hill alone. She took JD in a room and came back to get me so that I could talk with Dr. Hill. When Dr. Hill read my notes, he could not believe what all had happened to us. He told me that I was fortunate to still be alive and asked me why I stayed with JD after he tried to shoot me those times. I told hi m that it was simple... that I loved JD with all of my heart and would never leave him.
When we went into the room where JD was waiting, he was in a rage.. and shouted... "I bet she told you that I made her quit her job.. that's a lie." He also told Dr. Hill that he was going to burn our Explorer. Dr. Hill wrote down some notes on a prescription pad and pushed it over for me to read. He had written "he is committable." I almost fainted. He told JD that he wanted to do another test on him and JD agreed. Dr. Hill and I went outside and he told me that he was afraid for me to go back home with JD because he might shoot me. I told him I was going to stay with JD regardless. He asked me if I was JD's power of attorney and would agree to admitting JD to a psychiatric ward. I told him that if I did that to JD, he would kill me when he got out, and if he did not kill me, his family surely would hang me.
On the way home from Dr. Hill's, I stopped at a medical services company and purchased "Depends" for him because he had loss of bladder control. That night, when JD had to go to the bathroom, it took us 20 minutes to get from the living room to the bathroom. After we came back out of the bathroom, he stopped me and told me he was sorry that had put me through so much hell. He told he loved me with all of his heart and did not know what he would do if he lost me. He said that I was all he cared about and that I meant the world to him. He also apologized for saying I had been unfaithful to him and said he truly knew I had never been unfaithful to him and said I could leave if I wanted to, I told him that I would never leave him and asked him if he remembered our wedding vows... he softly replied "yes." I said, "for better or worse... in sickness and in health, we would always be here for each other until the day that one of us died." I also said I was like an old flea on a dog's back...he couldn't ever get rid of me... he laughed and hugged me and told me that he would always love me. I cried.
He lost complete control of his bladder and when I asked him about controlling his bladder he said I spilled water on him. He totally denied wetting himself. From that time on, he would wet his clothes 3-4 times a day, I would take off all his wet clothes, clean him and put on new dry clothes. I asked again if he knew when he had to go to the bathroom and he said yes.. but he could not control himself. His problems with bowel movements were getting difficult. I would insert suppositories and give him enemas to help.
In January 1997, he lost more of his voice and it became very hoarse. He was almost totally bedridden 2 days early in January. I called Dr. Hill, explained how bad JD was and he said he was going to put JD in Whitaker Rehabilitation Center. On January 6th, we drove to Whitaker and talked with the doctor who Dr. Hill referred JD to. He did not have a room but asked JD to return on the 7th. On the way home, I asked JD if he was hungry and he said yes so we stopped in Clemmons to get his favorite peanut butter crackers and milk. I called Dr. Hill from a pay phone and told him the doctor would have a room the 7th. I opened the crackers and put one in JD's mouth. I started driving home and looked over at JD and he had this strange look on his face. I asked him what was wrong and he did not say anything at all. I pulled over and stopped the car. His mouth opened and his upper dentures had become loose and were falling out. I had never seen this happen to him before. I grabbed his dentures, reached in his mouth and got the pieces of cracker out. I said, were you choking?? He nodded his head yes. After this, I gave him liquids and prepared for the trip back to Whitaker the next morning. On Tuesday, after we got a room, the nurses requested I go home to spend the night. I felt very uneasy about leaving him but I honored their request and would leave late at night and return early the next morning. On Wednesday night, he became choked on his medicines and they had to insert a nasal tube .
I cried when I saw him Thursday morning. Dr. Hill told me he was going to ask another neurologist in for consultation on JD. After a lengthy consultation, the neurologist reported JD knew his last name and later on told him his first name. He did not know the year, the day of the week, his date of birth, his present location, the city where he lived or the President of the US. He was also very startled and jittery. He would jerk when the doctor touched him. This neurologist suggested a differential diagnosis of CJD and suggested various tests. I asked Dr. Hill what Creutzfeldt-Jakob Disease was. His explanation shattered my world.
On January 15,1997, Dr. Hill transferred JD to the hospital on a special care unit. I rented a cot to put in his room so I could stay with him. JD was never able to get out of bed again. The nurses and doctors were excellent in giving him the best of care. An "isolation" sign was placed on his door and visitors had to check in at the nurses station. This was fine with me because I was afraid if the word got out about the possibility of him having CJD, he would become a spectacle for anyone to see. JD was always a very private person and I respected this. So, I requested that no one be permitted to enter his room without prior authorization and that nothing concerning his condition or diagnosis be discussed in his room.
Dr. Hill talked with me about a brain biopsy being done on JD to confirm CJD. I asked details and finally decided to permit this. I decided to do this because if JD had a treatable disease, I did not want to waste any time in getting help for him. During this week, the neurosurgeon, performing the biopsy procedure, met and discussed it with me. When he left, I felt JD would be in good hands. The procedure was set for January 21st, but on that day, we kept waiting and no one showed up at the appointed time. The neurosurgeon called the room and said he would be up to meet with me. When he arrived, we met outside the room and he told me that those who planned to assist him were unwilling when they heard the patient had probable CJD. He promised he would arrange to have assistants the next day. On January 22nd, JD and I went down to the operating room where the procedure was performed. He was on a hospital gurney and was afraid every time the orderlies turned a corner with him. I held on to his hand and reassured him. I left him in the operating room and went to the waiting room. The biopsy was successfully performed and I met with the neurosurgeon who said JD did excellent and was back in his room. I asked him how the brain tissue looked... he let his head drop and replied the tissue was very spongy and soft. I asked him if that was a bad indicator... he softly said "yes" with tears in his eyes.
Dr. Hill had several tissue samples sent to different testing facilities and all of them came back positive for CJD.
Please excuse me, I must continue my story later.
Copyright © 1997 - 2014, CJD Voice. All rights reserved.
You are visitor number since February 18, 1998