Start Page | Caregivers Case Histories | Features and Glossary | Network Support Groups
This guide has been written for those sufferers, families, and anyone else involved with CBGD, CBD. I hope that it can be a possible starting point for those who, after having been diagnosed with this disease, have nowhere to turn. Nothing can be done and we dont know what to expect were the common responses from the medical community. Well, it is true that what one family goes through may not be the exact path another takes. However, through over 5+ years of correspondence with others diagnosed with this disease; common situations, events, symptoms, patterns begin to take place. This guide is not meant to be set in stone. It is simply that - a guide to help those about to embark on a journey. I write this in memory of my father, Joseph F. Harvey, and dedicate it to all those who have or will travel a similar path as he.
This is a story of the Harvey family. It is how 2 brothers, 2 sisters, and 2 parents lived through a horrible disease. A little background is necessary before we begin our journey of CBGD. While I was the one caring for my dad daily, it was each of my family members, including aunts, uncles, neighbors, and friends that also helped.
I realize this guide is to help others cope with this disease, and as I walk you through my experience, please keep in the back of your mind, my Dad through this entire process, was 100% fully capable of thinking, making decisions, and knowing what was going on. In other words, he was competent. The only things that were not were his hands, feet, and at times his wordshe knew what to say, but could not get the words out.
While my involvement came later in the disease, I can touch on a bit of the prior years events. It was in 1989 the signs of CBGD first came about. Dad had a hard time tying his tie before work. It would eventually become something my mother would do for him without any questions as to why he could not. He then had trouble writing, his print once perfect, now was shaky. He had a hard time remembering how to write his name. He couldnt remember how to swing his golf club, something he had enjoyed for 40+ years. He could not throw a ball anymore because he could not quite figure out how to let go. When mowing the lawn, he did not remember how to get the grass clippings out of the basket and into the trash. Things were not the same.
I have outlined some of the symptoms associated during this time. They are as follows:
(1989 - 1994)
Mom saw it. Mom watched. However, we kids, were busy with our lives, stopping in and out of the house, never really taking notice. We would think she was being overprotective, but later I learned she was just worried. I remember going shopping at Costco and she was scared he would get lost and I would jokingly say, Ah, Mom, the store has 4 walls, how can Dad get lost? It wasnt until I began to care for him did her words ring true. Dad tried putting the car into reverse and did so with the blinkers, thus breaking it. He gave up his work and the car keys. He went for long walks. Later, he began losing his balance. One weekend, he fell off a 4-foot ladder trying to trim the peach tree. When he fell, he fell straight back on his head. This is when my mother began to worry more. He had been seeing a neurologist for a stroke he suffered in the 80s but this time, Mom wanted to know more. The results were that he had some type of progressive brain disease that would worsen. Without more testing, they could not say exactly. Dad opted not to know.
My mother died on February 15, 1994 from emphysema. After my mothers death, my Dads symptoms worsened. We believe that this emotional trauma in his life helped to expedite the disease processes. I was at a point in my life where I could move back home and care for Dad. So, my husband, my 3-year-old daughter and I moved into the back part of the house. From this time forward, I was the primary caregiver for my father with my entire family as backup. Without them, I could not have done what I did. And without my Dads sense of humor, good nature, and just plain being easy going, none of us could have gotten through this. And, it is from here that my journey begins. 3 years, 10 days of caring for my father who had Corticobasal Ganglionic Degeneration a.k.a. CBGD/CBD.
Dad could still get around, only falling occasionally, and could still do most things for himself. New symptoms begin to appear. He would move his right hand sometimes when he spoke. Other times, he would pick up the TV changer or a Kleenex on the table beside him hundreds of times. He would pick it up, put it down, pick it up, put it down, etc. When asked why, he said he did not know Its like it has a mind of its own. Dad during this time began to get depressed and cry all the time. His neurologist suggested Dad take Prozac. This helped with his emotional problems. We still had no answers regarding his neurological problems.
However, seven months later, Dad got worse. I began having trouble-picking Dad up from the falls. I was 52 and my Dad was 6. He had a harder time helping me. Rather than pushing up, he would push back and we both would end up on the floor. It was at this time, we decided as a family to go ahead and do the additional tests. My sister was a nurse, and we thought it would be easier to face this if we knew what lay ahead.
So it was in November of 1994 we received the diagnosis. CBD, Corticobasal Degeneration. It was suggested we put Dad in a home because it would become too hard to care for him. But together, as a family, we decided this was not an option. We were fortunate to have resources available to keep Dad at home. And it is a decision every family must make and each decision is correct for each family situation. For us, we would take care of him.
Dad was in phase 2 of the disease; approximately 6 1/2 years into the disease. I have outlined it below.
Phase 2 - (1994
My sister suggested we get home health to come in and help Dad with possible occupational and physical therapy. We had a supportive neurologist who wrote the prescription for home health. However, the nature of the disease was that Dad was going to get worse, not better. After 8-12 weeks, they would release him from the program because they did not see any improvement. They did give us helpful hints, however, because of the rare disease, they did not know what they were dealing with. No one had ever heard of CBGD. I had downloaded abstracts regarding CBGD and would give this to them to read. However, this strange neuro disease baffled them.
Dad would still go for walks to the golf course and would go on small trips with my brother. He spent most of his days listening to books on tape. My sister had told us that if we get a doctors note indicating Dad could no longer read, that the Braille institute would loan a special tape recorder (one with big numbers) and books on tape at no charge. We could either rent the books at the local library or have them mailed to us free of charge. Dad must have listened to hundreds of tapes during this time.
It was in December of 1994 when things would drastically change. A hard fall on the sidewalk, straight back on his head. Dad said he was okay. We took him to doctors, who said he was okay. He ended up in the hospital with prostate problems. We urged them to do a catscan. They did and found he had a subdural hematoma caused by the fall. They had to operate and put tubes in his head to drain the blood and relieve the pressure. He was in rehab for 6 weeks. When he got out, he was not able to walk well anymore. This is when Dads world slowly started to shrink.
He was now in phase 3 as outlined below.
Phase 3 - (1995
- middle of 1996)
Because of Dads size and strength, I needed help. We called some agencies and found a woman, Margaret, who was 61 tall. She came and lived with us 5 days a week. Margaret was with us until Dad died. She was an invaluable person in this story. She was always there, always wanted to learn, and above all, respected Mr. Harvey. The other 2 days I was on my own. Thanks for my brother and husband, because there were days I could not move Dad. My fathers muscles for almost 2 years straight were rock hard.
During this phase, we tried various medications. Symettrel and Sinemet the Parkinsons drugs, Flexerill for stiffness, Neurontin and Permax for movement, Klonipin for his restless feet at night, Tofranill for relaxing, Ambien for sleep. If we thought it could help, Dad was willing to try. Life was like this for approximately 1-½ years. He would have periods we called lean to when he would lean to his right side (bad side) for approximately 1 week. After this he would have lost something, meaning, his speech would be worse, his alien hand would act up, he would get stiffer, etc. These would come every once in a while, but later would happen increasingly often.
We used a gait belt to transfer Dad. A gait belt is a cloth belt that goes around the upper body that allows you to have control when transferring the person. Dad could not move his hands or feet the way he wanted to. During this time, we would take Dad for long walks on his wheelchair, go get ice cream, etc. My fathers attitude through this disease was unbelievable. When I would comment on how positive he was, he would say, What else can I do?
Near September of 1996, Dad began withdrawing increasingly. We thought it was because he had such a hard time talking. He would get as frustrated as would I. He slept more often. He began having problems with his bowels; either constipation or diarrhea. He had a hard time eating, at times taking almost 45 minutes to feed him. But Dad loved to eat, and he wasnt going to give this up very easily. He pushed on.
We are now entering the final phase. I have outlined it below.
Phase 4 - (middle
1996 - 2/25/97)
Phase 4 obviously was the hardest. It lasted for 6 months, but the last 2 months were the hardest. However, what did make it easier was the fact that both my parents made it known their wishes for dying. I can not stress enough the importance of a Living Will, Durable Power of Attorney and Do Not Resucitate orders. This made the process easier as I was not the one making the decision.
In January of 1997 he seemed to be getting less interested in having us wheel him around the neighborhood in his wheelchair. He was more quiet than usual - hindsight being 20/20. In addition, one night in particular, he choked badly on some food. Oh, we had other choking problems, but this night his face was purple and it was not until the last moment he remembered HOW to cough... see his stomach muscles were so tight that doing a Heimlich was almost impossible. He seemed to be okay but was having more and more problems taking meds and he was either constipated or had diarrhea. We had that problem in the past but nothing like this. He also began complaining about pain in his left shoulder. My father had never complained of pain before this. When we would transfer him, he would shout Ow,ow,ow,ow... from the pain.
We had recently gotten hospice in and they felt that Dad was doing okay...(although no one had ever dealt with CBGD). I would urge everyone to call hospice and have him or her evaluate your situation. They were only with us 6 weeks, however, they were a great source of emotional help, medical help, and spiritual help. Because of Dads shoulder pain, we left him in his hospital bed and he began sleeping most of the day. Eight days prior to his death, he had to have an enema due to a possible compaction of the stool. What I saw in his eyes was when I knew he was giving up...He realized this was what lies ahead and I feel it was then he decided to call it quits. Dad was complaining so much about pain they began morphine; which of course makes one constipated! He began to sleep continuously. He started filling up with mucus and it went from clear to dark green in a day. No antibiotics were given, as that was my fathers wishes. Even when I tried to suction him, he would bite the tube and look up at me as if to say, NO MORE I AM READY....
He died in his sleep after 5 days of not getting out of bed on 2/25/1997. The cause of death was aspiration pneumonia. He had all of his kids around him during the day/night. He passed at 5:00 am (about the time he used to get up to go golfing) and UCI -University Irvine came and took his body in order to remove his brain for donation. He then went to the mortuary where he was cremated and his ashes were spread on the ocean like my moms.
It was confirmed approximately 8 months later from the brain autopsy that dad did have Corticobasal Ganglionic Degeneration. My dad felt strongly that he donate his brain to help others. By donating his brain, he has helped researchers in all areas of neuro studies. I also feel that Dad did not die in vain.
My mom used to say, Things happen for a reason. And I try to find reasons my Dad went through this horrible disease that robbed him of his movement but not his mind. And I have come to the conclusion, that while this disease is awful, there are others out there just as terrible if not worse. But we turned it around. CBGD brought our family together in ways I never thought possible. My siblings and I learned so much about my Dad that we never would have talked about. My dad and daughter were able to know each other because we all lived together. And finally, because of the CBGD Support Network and cbgd-support listserv, I have met hundreds of people in similar situations and hopefully have touched their lives with my experiences with CBGD.
Life goes on. Nevertheless, a day doesnt go by when I dont think about my Dad and remember a fond moment in our lives or a funny antidote and laugh. He was such a good sport through this disease. I hope this has helped and urge everyone to talk with others. You are not alone.
(1989 - 1994)
Phase 2 - (1994
Phase 3 - (1995
- middle of 1996)
Phase 4 - (middle
1996 - 2/25/97)