My name is Margaret and it’s the day after what would’ve been my 60th wedding anniversary; January 21, 2021. I remember the priest saying to us “because you do not know what life is going to bring you, we ask you to take each other for better or worse, richer or poorer, in sickness and in health until death do you part.” We had no idea what kind of challenges were in store for us. We were bright eyed innocents, madly in love and anxious to begin our life together. I grew up in a family that was reasonably healthy with both parents; He was living with an Aunt and Uncle who took him in when his father died and his mother was deemed by the courts to be an unfit mother. She was an alcoholic. I didn’t think too much about it, I felt bad for him but he was a really nice person, held a full time job while attending college classes, charming, witty, intelligent, went to church every Sunday and he was really handsome. So, what could go wrong?
Due to fertility problems, we were married four years before our first child was born, a perfectly healthy boy, we named Ronald. Soon, after Len changed careers and started training at the California Highway Patrol Academy. But, due to an overactive thyroid, he had to have thyroid surgery before he could pass the physical. He graduated and was sworn in as a Traffic Officer. Shortly after he graduated, we learned we were going to be parents again.
Our daughter April was born and had serious problems from day one. We spent years trying to find out what was wrong with her and finally got the diagnosis: Prader Willi syndrome, a very rare disease. She went through years of therapy, special ed classes and serious weight gain and emotional problems. April died from a pulmonary embolism when she was 15 years old. We were devastated. In the meantime we had become parents of two more children, Timothy was born and he was perfect, he looked like his Dad and was a charmer from day one. Then a couple of years later we became parents again to a baby girl, we named her Melinda (whom we call Mindy). She was very verbal (that means she cried a lot) but she was bright and healthy. We decided that our family was complete and got on with the task of taking care of them.
We had the usual ups and downs that any couple has but we were busy, he with his job and me taking care of our home and kids. When our oldest son graduated high school, I got a part time job at a church as an organist/pianist. I worked mostly on the weekends with a couple of choir rehearsals during the week and also played for most of the weddings and funerals that were held at the church. I had that job for 22 years and I loved it.
Around the time that our youngest was graduating from high school, Len started going through a personality change. He was a great tease, but couldn’t take a joke. He was always easy going but little things started to irritate him. He started getting anxious about things that in past years, never would’ve bothered him at all. He started hanging out after work in bars, something that he had only done occasionally in past years and I feared he was becoming an alcoholic like his mother. I finally addressed the drinking and he apologized and stopped doing that. Things got better for a while. Our kids were mostly grown now. Mindy was leaving for college and we were becoming empty nesters. We had time to take a few trips together and have the house all to ourselves. Mindy graduated from college and a week later Len retired, he was 57 years old.
Len had begun seeing an Internist a couple of years before he retired and he was being treated for an underactive thyroid and a couple of other minor problems. He complained about side effects of the medicine he was taking he said he couldn’t sit still. He was having trouble sleeping too. The doctor told him that he had to take the medicine because the little piece of thyroid that they left had quit working. He kept changing the dose but it didn’t help much. His doctor started referring him to specialists, one of which was a Neurologist, this doctor ordered a few tests and didn’t find anything wrong with him. The strange movements continued and his temper was getting out of control, though he was never physically violent. One night, he had a major panic attack and I took him to the ER. The following morning his Internist referred him to a Psychiatrist. He worked with her for the rest of his life, she prescribed antianxiety medicine for him and an antidepressant. He was finally able to sleep well but the strange movements continued and got worse. He blamed his medicine for this. Trying different antidepressants finally got his emotional problems under control, but the strange movements continued and got worse.
Every time Mindy came home to visit, she could see the changes and decided to take matters into her own hands. She was working at the MDA clinic in Santa Monica and ask someone there to refer her to a Neurologist in San Diego. We called the doctor’s office and made an appointment. This doctor gave him a thorough workup and discovered that he had major arthritis problems in his neck that needed surgery, he told us that he was not an expert in movement disorders but he would help us find a doctor that could help him. He wrote a referral letter back to the neurology practice where Len was first seen and asked the director to get him a movement disorder specialist and a Neurosurgeon. At the first appointment with the new doctor, he told us that he had just hired a movement disorder doctor and with our permission he would like to call her into the room. She asked him to do a few simple tests and said have you ever heard of Huntington’s Disease? It turns out, this was the answer to our mystery. He took the test and the results were positive, 41 CAG repeats. We were actually glad to finally have a positive diagnosis. Mindy was devastated, her brother Tim said he thought he had it too and Ron decided he wasn’t going to worry about it unless he got symptoms. Mindy got tested, she was negative. Later on, Tim and Ron started going to the San Diego HDSA support group and participating in clinical research. Tim and Ron were eventually tested and got positive results; both have 43 CAG repeats.
We were able to keep Len at home for the entire duration of the disease, he passed away at home. I just didn’t have it in my heart to do it any other way. We were fortunate that he had a “mild” case, he was a very gentle man. He never tried to hurt me, he felt bad that I had to take care of him and thanked me every day. Was it easy? No. It was one of the most difficult things I ever had to do. I was fortunate that two of my children were living with me that last year and giving me a hand when I needed it. It is physically and emotionally tiring to be a caregiver.
If someone asked me if they should take the risk and marry someone with HD, I would say no. Not only will you be tasked with watching your loved one suffer and die, your children will be at risk and most HD patients don’t make good parents. The fact is, we didn’t know it was in his family. I was so young and so in love that no one could’ve convinced me not to marry him. In hindsight, I have never regretted being his wife. What I do regret is two of my children have to suffer the indignity of this horrible disease, they all had to watch their father suffer and die and my two grandchildren are at risk.
My husband was 71 years old when he died so we had many good years before he became symptomatic. I would estimate that he was symptomatic for 14 to 16 years. He was fortunate to have a retirement income, and health insurance that couldn’t be taken away from him. Most are not so fortunate.
We believe that Len’s mother was the carrier of the HD Gene, although she never knew she had it. There are several children, now adults, in this picture that are at risk although none of them have shown any symptoms. His brother tested and his CAG was in the mutable range but he will never get it himself. I pray that no one else will get it and also pray for a cure.