Anosognosia: A Personal View
Life with someone who has Huntington’s disease is difficult to say the least, but what if the victim of this disease is in denial? How does this affect the person afflicted, and how does it affect the family and friends who are closest to them? Realistically, I can only speak from personal experience as my wife is one of those patients who are in denial of this rare disease that afflicts approximately 30,000 people in the U.S. alone. This works out to be about 1 in 10,000 with another 200,000 at a 50 percent risk of having the gene that later develops into Huntington’s disease. Huntington’s Disease, also known as Huntington’s chorea, sometimes abbreviated as HD, is a neurodegenerative genetic disorder that is the most common genetic cause of repetitive abnormal movements called chorea.
It was named after American physician George Huntington, who published one of the earliest descriptions of the disorder in 1872. "Since it is inherited, an affected parent has a 50 percent chance of passing it to each child, and it runs strongly in families, often affecting several generations."
The ways HD affects different individuals vary, even in the same family, but its progression is similar except for the speed of progression. Symptoms can begin at any age, but for most victims onset starts anywhere between the ages of 35 and 44. As the disease progresses past some movement (not everyone experiences chorea) and a gait that resembles someone who may have drank too much alcohol leading onlookers to believe that they are drunk, the most alarming symptom is that of choking. HD affects the ability to swallow and eating becomes a horror rather than what is a pleasure for most of us. Presently there is no cure, nor are there any treatments for the disease. There are drugs available to ease the movements that afflict patients with HD, and research is ongoing with the possibility of treatments now in clinical trials.
According to MentalMeds.org, denial can serve a useful purpose in helping people deal with sudden changes and doesn't really inflict harm as long as the denial is not maintained over an extended period. However, as debilitating as mental illnesses such as depression, anxiety, etc. are, there is one that is worse than all others which is referred to as Anosognosia which is different than the denial of a simple problem. It's deeper than that and is instead the inability to recognize that the problem even exists. In our family’s experience, it was a nightmare. Denial is the rule of the day. It is not talked about or referred to in any way. Since it is very easy for a person with HD to become agitated and unreasonable, it was always a source for conflict that was often violent in nature, so police had to be informed as well as professional caregivers.
When my wife was home with us, most nights were spent calming her down as dementia has been a constant occurrence. At times I spent nights pretending to toss incredibly large snakes out the door or put out fires and cure the odd sick child. I learned that to argue would only have meant more agitation on her part thus prolonging her agony. Our family doctor is overworked but has always been sympathetic to our plight and had tried to make some headway only to have her shatter everything he tries by refusing tests or medications to calm down her mood swings. He referred to her denial as a “Shakespearean tragedy.” Here is a woman whom if she would have faced what she apparently has, and accepted treatment for the symptoms, could have had a much better life, but was destined to misery for herself simply out of stubbornness and maybe even an inability to reason.
Extended family strengthened her denial as well. In her agitation, she would confide in them about my concerns and be very indignant so that they would agree with her rather than being honest. They would tell her that nothing was wrong with her and that they couldn't see why I would be concerned. Due to her inability to come to terms with the disease many things in our household had to change.
I had to change my employment and began to work from home, and pay exclusive attention to her as paranoia made her think that she was not a priority. As for me, I was probably one of the biggest enablers of all time; I bragged up her cooking (she was a beautiful cook) but as the disease progressed she required more and more help from me, She had always kept our home immaculate but she became apathetic, so I took over most of the household chores but pretended that she was still the one who made it all happen.
She loved to go out dancing, which we did every week, but she was no longer able to maintain the beat or follow my lead. I still took her to dances, but I quickly learned to compensate for her so that she could still enjoy her night out. The denial put a heavy burden on the family unit. She didn't appear to notice. Now, as she is in the final stages of HD, she lay there unable to speak clearly, walk or eat she still maintains her denial of the disease.
Watch the video below:
According to the Huntington's Outreach Project for Education, at Stanford, or HOPES, "Such denial is not under the individual’s control, so “unawareness” may be a more accurate term for people with HD. It is also important to note that "unawareness" is a cognitive as well as a behavioral symptom of HD and is currently considered an untreatable component of the disease."