VCP Disease and Me
by Lindsey Campbell
I remember, when I was very young, my grandmother would come pick me up from school and take me to her house. She would fix me a peanut butter and jelly sandwich with an RC Cola. We would play UNO for hours until my parents would pick me up. Fast forward a few years, Grandma Dot couldn’t pick me up anymore so my brother and I would ride the bus to her house. She walked with a walker but would still feed us a sandwich and an RC Cola. We still played UNO with her even though she was moving much slower. Through many trips to many doctors, including Emory in Atlanta, Grandma was diagnosed with Inclusion Body Myositis. There was no cure and no treatment. I remember helping my mom take care of my grandmother when I was 12 years old. I would go help feed my grandma, change her clothes, clean her house, etc.
In the late, 1990s my mother started to fall randomly. Her gait was off, her balance was failing, and she was getting weaker. My mother absolutely loved doing things outside. I remember she was trying to help me cut grass and she fell right in front of me. I felt helpless and I was only 13 or 14 at the time. Once again, we went through multiple tests, muscle biopsies, and blood draws, to find out that she too had Inclusion Body Myositis (1998). In 2000, my mom was medically disabled and could no longer work her full-time secretary job. My grandmother’s needs became too great and we had to transfer her care to a nursing home. My mother just could not do it anymore. Grandma was completely bedridden and needed assistance with everything.
My grandmother died in 2001, in the nursing home, due to complications from pneumonia. In the late days, Grandma could not even swallow. Somewhere between 1998 and 2001, my mom’s brother, Ricky, was also exhibiting signs and symptoms of the disease. He was diagnosed with Inclusion Body Myopathy. Not sure of the difference between the two diseases, but his symptoms were the same. Weakness, falling, trouble walking, etc.
Slowly, very slowly, my mom and my uncle got worse. In 2003, my parents decided to divorce, and I told my mom she would stay with me as long as I could take care of her. My mom and I moved to an apartment once I graduated from high school. She could still walk short distances at that time. She could still use the potty and take a shower by herself, although sometimes she needed assistance washing her hair because she couldn’t raise her arms up over her head. There were several times when I would come home from a day at college to find her lying in the floor because she had fallen and didn’t want to bother anyone to come pick her up. I would help her up or call some friends to come help. I would like to add that I too have a brother. At this point, he had moved away to Georgia to work, so he was of very little assistance.
Fast forward a few years, my husband and I had gotten married and moved Mom into our first house together. The last time my mom walked was at our wedding ceremony in February of 2007. Around this time, we decided that I needed a little bit of help with Mom’s care. She could still function mostly on her own, but she needed help getting into and out of bed, daily. Through some research, Mom found out about a program called Community Long Term Care. We used this program for approximately 12 years. Through this program, we would get aides that would come in for a few hours in the morning and night to help my mom with dressing, showering, transferring, and other daily needs. It proved to be a very helpful asset to our life, especially once I began having children.
In May of 2010, my uncle Ricky passed away from sepsis. He was not keen on people helping him out daily, so he did not have very good medical care once he couldn’t walk anymore. He had horrible swelling in his feet and legs but didn’t receive proper treatment for them. This led to infection and finally sepsis.
We were living life the best we could. Mom enjoyed living with us and watching her grandkids come into the world. My kids absolutely loved having their grandma with them all the time. My mom couldn’t do much with them, but they loved her anyway. They would play computer games with her and watch tv with her. By 2010, Mom lived in her wheelchair. She would spend all day in her chair, only going to bed at night to sleep. Her aides would put her on her side to sleep and usually she was comfortable in that position to sleep all night. She could not move to reposition herself. So, if her leg, or hip started to hurt, she would call me from across the house to come readjust her. Sometimes it was right after the aide would leave, sometimes it was 3 or 4 in the morning. I was “on-call” 24/7 for my mother.
Around 2012, we started having issues with our helpers. Sometimes they would call my mom and say, “I’m not coming to work today”, sometimes they would just not show up. At that point, I would have to step in and work with Mom. Being a Stay at home Mom, I was generally able to do this. But once I started working more in 2015, this became more of a problem. My mom would call me while I was at work to tell me that her aide didn’t show up and she needed me. I worked on an ambulance; I couldn’t just leave. This is when things started changing. We went through countless different aides and workers. We would find a good one and then they would quit. This went on for years.
My husband and I decided that we wanted to build our new home in 2017. In 2018, we moved my mom back into my dad’s house because it was accessible to her. The plan was that she would live there while we built our house and then she would move back in with us. Well, obviously, the build has taken a lot longer than originally planned. She lived at my dad’s house for a year and a half. Our new home still isn’t finished. Instead of calling me from across the house to reposition her at night, she would call me from across town. One night she called me at midnight and then again at 4am. In 2018, Mom also started getting very confused by what we were saying, and not understanding people talking. She can read things fine, but understanding the spoken word was getting really difficult for her.
The past 6 months or so has been the hardest for us. Mom’s mental state has started to deteriorate very quickly. She doesn’t understand hardly anyone speaking, even me. My brother helped out with taking Mom to a few doctor’s appointments in the summer. One of which was too a new neurologist in Greer, SC. Through this doctor we found out that Mom has IBMPFD. She does not have the Paget’s Disease, but definitely the Inclusion Body Myopathy and Frontotemporal Dementia. While at those appointments, the doctors offered to test my brother and me for the disease. I was very adamant about not being tested. My brother decided that he wanted to be tested and he had the blood test done. While waiting on his results, the genetic counselor contacted me. We had a long discussion about why I should be tested, and I agreed to have the test done. My anxiety went through the roof as I went to have my blood drawn. While waiting for my results, my brother received his. His test came back positive. That meant that he has the VCP mutation. Once he starts showing symptoms, we will know more about how severe his disease will be. A few weeks later, the genetic counselor called to let me know that my results were in and he would like to set up an appointment to discuss them.
October 18th, 2019 was the day of the appointment. I don’t think I’ve ever prayed so hard for a test result in my life. I had stressed about this disease for years. I lived my life as if I would have the disease and my children would have to deal with that the same way that I had with my own mother. I took my best friend and my husband with me to the appointment. They both knew how much this disease had overtaken my life. As we sat there, hand in hand in hand, the genetic counselor said the word NEGATIVE. I have no idea what else he said. All I heard was negative, and my life instantly changed. Now I could see myself walking past the age 55. I could see myself playing with my grandchildren in the floor. I could see myself growing old with my husband and working out on our farm for years to come. The world was a new place for me. October 18th of 2019 will forever be one of the greatest days of my life. The best thing about the negative result was that my children are safe from the gene mutation as well!
My brother and I discussed amongst ourselves and our spouses and decided that we would not tell our mother about the tests or the results. We knew that my negative result would make her very happy, but my brother’s results would be devastating to her. My mother had a hospital stay in November and while she was there, we decided that she needed to be placed into a nursing facility. The doctors and nurses agreed with our decision, so we began the process of getting her placed. My mom was completely against going into a nursing home. She said that she was fine and didn’t need to be in a facility. Mom was to the point that she shouldn’t be left alone at all.
On December 11th, 2019, my brother, husband and I took her to the nursing home. She thought she was just there to visit, but we had to tell her that she was staying there. She hated it there. She didn’t like the people. But I think that had a lot to do with the behavior changes that are common with the Frontotemporal Dementia. She had never been a super emotional person, but she started crying all the time. There are many things that she remembered, but there were some random things that she would forget. Sometimes she acted like I never saw her, but I had just seen her the day before. She remembered getting together for Christmas, but she didn’t remember that she was being very rude the whole time. She was usually a very kind lady.
My beautiful mom fought a long, hard battle. She went to be in the arms of Jesus on Friday, February 28, 2020. She has a brand new body that is perfect in every way. There are no more wheelchairs or hospital beds. No more tears, no more pain, no more discomfort.
That’s the story of how IBM has impacted my family. I’m very interested in seeing what Cure VCP Disease can do for my brother and possibly his children. I’m hoping for the best and praying daily that my brother doesn’t have the disease as severely as our mother did.