I Hate this Disease, but I Love Him

Today is our 46th wedding anniversary. As I sit here, I remember a special young man, cute, warm hearted, with a sense of humor that wouldn’t quit. He was smart, articulate and sexy, not like any other guy I had ever met before. I was madly in love and felt like the smartest girl in the world because he loved me back and we were getting married.

We bought a house a few months later and settled down in the suburbs. He was still finishing college and I was working full time. We discovered somewhere along the way that he had hyperthyroidism and he started treatment. It took five years to become parents; there was a miscarriage and then finally a full term pregnancy that produced our first son. Three more children followed another boy and two girls. Our oldest daughter suffered from Prader Willi syndrome and died when she was 15.

He wanted to make a career change in his late twenties and after a long period of interviews, testing and a comprehensive background check he was appointed to the Highway Patrol Academy. He completed his studies and was sworn in as a peace officer, a career he enjoyed for 28 years. He was an honest cop, respected by both the community and his peers.

While he worked, I stayed home and raised the children. He enjoyed working the afternoon shift which meant he went to work around 2:00 in the afternoon and his shift ended at 10:30pm.

His health was pretty level for many years; he caught colds, flu, and the usual stuff. There was nothing remarkable about any of his illnesses. He had to pass a physical performance test every year and a health screening given by his employer. I’ll have to admit we weren’t very good about getting to the doctor every year. Shortly before he became eligible for retirement, he started to notice that something just wasn’t right. He was dizzy, shaky and suffering chills for no apparent reason. He made an appointment for a physical and discovered that he was anemic, and now needed thyroid hormone replacement. But that didn’t fix much. The anemia went away within a month after taking iron pills. He found that he couldn’t sit still. Hmm, well it was probably his thyroid medicine and he and his doctor worked together to get the dose adjusted just right. He worked for two more years and then he retired.

We started to notice a personality change. As a man with a great sense of humor it was the normal thing for him to be a big tease. But, now it wasn’t okay for us to tease back. Things that never bothered him were making him angry. I told the kids to walk a wide circle around Dad! At some point, the doctor suggested he see a Neurologist. He went to the appointment got the exam and it was suggested that he might want to get a test for some genetic disease. (It wasn’t Huntington’s) He decided not to do it as this neurologist didn’t stress that it was very important. He continued seeing his primary doctor though and he still couldn’t sit still.

Things went along for several more years; he developed an odd way of using his hands when he talked. He started every sentence with the word yes even when the context of the sentence was negative. He got clumsy, he started to lose his stamina and he became anxious and depressed. After a trip to the ER for a panic attack he was referred to a psychiatrist who worked with him to find the right antidepressant and tranquilizer. He was treated by her for two years before we could finally help him make the decision to see another Neurologist for a possible diagnosis. At this point, he developed “The Walk”.

We had to see three more Neurologists before the diagnosis was made. Huntington’s disease. We had never heard of it until we found out that’s what he had. There was no family history, although his Mom was an alcoholic and had a nasty temper. He was removed from her home and given to relatives to raise when he was 11 years old so he never really knew her. We called his brother, he tested and was negative. At this point his sister was already dead so she was never tested.

Fast forward to today. My husband is like a toddler now. He can barely walk, he feeds himself but he’s very messy. On a good day he gets himself to the toilet on time but sometimes he doesn’t. He’s taken to wearing male incontinence pads in his briefs but they don’t help much when he soils himself. His speech is slurred and he has trouble putting a complete sentence together so he doesn’t talk much. It requires too much effort. He mostly dresses himself but I have to help him with a few things, he lets me know when he needs help. He doesn’t like to take showers but he washes himself and enjoys the shower once he gets in there.

I remember, 46 years ago today saying, “I will love you for better or for worse, for richer or poorer, in sickness and health, and forsaking all others keep only unto you for so long as we both shall live."

I was a church organist for 22 years and remember sitting "on the bench" at many weddings thinking to myself, "You two have no idea what you're promising". I know I didn't.

Why am I writing this? Certainly not to get sympathy, you people know all too well what HD families go through. I guess it just helped to get it all down on paper and off my chest. I love this man and hope I have the strength to be here for him until the end.

Marg