In Your Words: Lessons to be Learned
As a caregiver, Larry Harris is preparing for his wife’s future with Huntington’s disease one day at a time
Huntington’s disease (HD) has been a big curveball for us. It’s such a slow, gradual disease and it really snuck up on us in many ways.
My wife, Mary Jo, had been having symptoms but it was kind of misdiagnosed as depression and anxiety. In 2007 she was having problems at her job. It was frustrating for her. So, she resigned and we thought we’d find something different for her. Little did we know this HD was in the background. Her cognitive symptoms were starting to kick in right around the same time and it became literally impossible for her to really manage her life and get another job.
We kept going for several years. Mary Jo was going to counselors, she was going to psychiatrists, she was taking medications, and finally in 2011 we started talking to the doctors about her early onset dementia-type problems. We went to a neuropsychologist, had tests performed, and he said she was definitely impaired. So we applied for disability, but without the HD factor, we were denied. It was so frustrating; I didn’t know what to do.
Of course hindsight is 20/20, but Mary Jo’s older brother was also having cognitive-type issues at the same time. My sister-in-law called right around Christmas of 2013 to tell us he had been diagnosed with Huntington’s disease. I had never heard of it. That night I started reading about the symptoms and I knew. It hit home. I said, “This is what Mary Jo has, too.”
I started making phone calls and we were put in contact with Rush University Medical Center; they’re a center of excellence for HD in the Chicago area. For the first time it seemed like we were finally getting some traction. We got an appointment at Rush, and sure enough, on March 14, 2014, the doctor confirmed the diagnosis of HD for Mary Jo.
From that point, we went ahead and reapplied for Social Security disability. We had years of documentation and information, but it’s difficult to know how to put that together to present it properly. That’s where Caring Voice Coalition (CVC) came in and hit a home run for us. I had all the pieces of the puzzle but CVC was able to really put it together. We received notice in August of last year that we were approved. That was a huge blessing. Missing that second income had really been hurting us for several years. I kept saying, this is a double-edged sword here, you’re fighting the financial piece and you’re fighting the disease, too.
I say it’s like we were in a dark room fighting an opponent and we didn’t know who it was. Now at least the light’s on in the room. We’re still fighting something, but we know what it is and we have a lot of support to help fight it, too.
Before Mary Jo’s diagnosis, I didn’t know what was going on, and honestly I had a lot of anger and resentment. I wondered why she couldn’t get a job, why she couldn’t do this, why she couldn’t do that; it was frustrating and it was depressing. Now that’s not even a part of the picture. There’s no time for self-pity or feeling bad about yourself, it’s time to just do what you need to do. So, in that effect it’s been really liberating for me. Now that I know exactly what we’re dealing with, we can’t be bitter or angry because it’s not her fault.
Apparently Mary Jo inherited the HD from her father, but we’ve checked with family members and there doesn’t seem to be any history, so it seems to be a first-generation diagnosis. That part has been really puzzling and baffling. I know it’s bothered Mary Jo. We’re trying to figure it out…where did this come from?
The legacy piece has been difficult. We have one son, he’s a senior in high school, and he’s at risk, too. He has a 50% chance of having it, so that’s been emotional, thinking that he might also have a problem at some point. And it’s not just him, but all the children. Her brother has five children at risk so you worry about them, as well.
Now that we can see our opponent it’s been a lot easier, but it’s hard to know what’s going to happen with Mary Jo. Everyone’s unique, of course, so we don’t know exactly what path her life will take, but at least we have support and we know somewhat what to expect. We go to a monthly support group meeting at a local hospital and we’ve met some good sources there that I can call at anytime if I have any questions. Just knowing that they’re there if I need them is comforting.
I don’t think Mary Jo will really need 24/7 care for another 5-10 years, so we’re dealing with today, and hoping for the best, and planning for tomorrow the best we can. I want to help Mary Jo all the way. I prefer not to put her into nursing care, or a nursing facility, if I don’t have to. I want to try to take care of her for the rest of her life.
I think it is important to remember yourself, too, especially with exercise and eating right. Try to do everything you can to not forget about your own health, both mentally and physically. Once I found out Mary Jo’s diagnosis, it kind of just clicked. I felt like I really needed to get myself as strong as possible because this is going to be a long, challenging fight and my family needs me more than ever. So, I need to give everything I can, and be around as long as I can to be there for them, and be as strong as I can to help them. It’s going to be one heck of a battle, but I’m not going to give in or let it beat us.
I try to find the time to walk and I’ve been trying to get her to go, too. Really, we just structure the day to try and make sure we get everything in. I try to read; we’re always going to the library. And in the middle of this we also adopted a puppy. It’s good for me, though, because I’ll take walks with the dog outside and that’s a way for me to clear my mind.
Right now there’s plenty of time to be together, and have fun with each other. She still enjoys going to shows and concerts, and gardening, and of course we’re trying to do more walking together. And we try to have a sense of humor about things. Since she has trouble remembering words, we call it our daily game of charades. We act out whatever she’s trying to say. So we keep a sense of humor. I think that’s huge.
This disease scares me when I see how debilitating it can be to those suffering through the end stages of HD but I’ve postponed thinking about that right now because I choose not to be afraid. There is so much work to do and things to get done, including getting myself healthy and strong, so I’m not going to worry about that right now. I know if I do all the things that I have chosen to do right now, at that point in the future when Mary Jo’s health starts to decline I will be ready for it and I’ll deal with it when that day comes.
I have the Serenity Prayer posted in the den near my work area and try to say that prayer every day. I find it helpful to focus on the areas of our lives that I can change and make a difference today.
Things that you think you never could have coped with before, once they’re presented to you it’s almost like you’re forced to take it to another level that you didn’t even know existed. Mary Jo’s diagnosis has been very difficult to deal with, but it’s taught me to try to be more understanding, more patient, have more compassion, and don’t sweat the little stuff. It’s reminded me of what’s really important in life, and not to get upset over life’s daily inconveniences.
I have to remind myself everyday still, but I think there are lessons to be learned from Mary Jo’s HD and I try to keep my eyes open for those moments. I think there is a greater meaning to all of this and I try to see that whenever I can.
Huntington’s disease is an inherited disease that causes the progressive breakdown (degeneration) of nerve cells in the brain. Huntington’s disease has a broad impact on a person’s functional abilities and usually results in movement, thinking (cognitive) and psychiatric disorders with a wide spectrum of signs and symptoms. Which symptoms appear first varies greatly among affected people. During the course of the disease, some disorders appear to be more dominant or have a greater effect on functional ability.
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Caring Voice Coalition is dedicated to improving the lives of patients with chronic illnesses. Our organization continues to accomplish its mission by offering outreach services that provide financial, emotional and educational support.
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