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 who is in denial of this rare disease that afflicts approximately 30,000 people in the U.S. alone according to
statistics on eMed.tv
This works out to be about 1 in 10,000 with another 150,000 at a 50 percent risk of having the gene that later develops into Huntington ’s disease.
According to
Wikipedia, “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 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 according to
WebMD.
The ways HD affects different individuals varies, even in the same family but it’s progression is similar with the exception of speed of progression.
Symptoms can begin at any age, but for most victims onset begins anywhere between the ages of 35 and 44.
As the disease progresses past some movement 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 according to
HD Lighthouse. Research is ongoing and there are promising treatments now in clinical trials.
In our family’s experience it has been 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 is a source for conflict that is often violent in nature so police had to be informed as well as professional caregivers.
Most nights are spent calming my wife down as dementia has been a constant occurrence. At times I spend nights pretending to toss incredibly large snakes out the door or put out fires and cure the odd sick child. I have learned that to argue would only mean more agitation on her part thus prolonging her agony.
Our family doctor is overworked but is sympathetic to our plight and has 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 calls it a “Shakespearean tragedy”. Here is a woman whom if she would face what she obviously has and accepted treatment for the symptoms could have a much better life but seems destined to misery for herself simply out of stubbornness and maybe even an inability to reason.
According to our family doctor, in Canada, it’s not easy to declare someone incompetent. The person must be able to answer three questions. What’s your name? What is the date? And, where are you? She can answer all three questions.
She still maintains a driver’s license but I have managed to convince her that the car has problems that could make her stranded so she doesn’t chance it.
She chokes most meals and drinks down, walks like a drunk and says inappropriate things during conversations with friends and family. All of these are hallmarks of the dreaded monster disease.
To describe the disease in terms that most can understand, I tell them this…imagine having someone in your house that has Alzheimer’s, Parkinson’s, and Tourette’s syndrome all at the same time.
In some South American countries victims of this disease are kept in
makeshift jails in their homes as there are no services to help families deal with the unpredictable nature of the symptoms.
Due to her inability to come to terms with the disease many things in our household have had to change. I have to work from home, pay exclusive attention to her as paranoia makes her think that she is not a priority.
My 9 year old son doesn’t remember when she was “normal”. He doesn’t remember that she ran her own restaurant, was a beautiful painter, designed her own clothing and could cook like she should own a 5 star restaurant. She was also, and still is one of the prettiest women that I ever laid eyes on.
As for me, I am probably one the biggest enablers of all time; I brag up her cooking, her cleaning abilities etc. I still take her to dances. She loves that as we used to dance up a storm and we even won a few dance contests in our day. We loved to Jive. I try to hang onto what once was but sometimes I realize that the only woman that I ever loved, the one I’ve been married to since I was 18, and had three children with is gone, never to return.
Most people aren’t aware of HD, including medical professionals. The Huntington’s Society does it’s best by sending professionals, including medical and even educators information packets on the disease to increase awareness and understanding. This does help but there’s not much you can do inside the home.
I remind myself daily of my marriage vow of “for better or worse and in sickness and in health”. I meant those vows and will continue to keep them “until death do us part”.
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