Misconceptions of People with Huntingtons Disease

The thing my mother regretted the most was that no one understood what she suffered from. Either they had never heard of it, or they had their own misinformed view, or they didn’t believe it existed. Some people she met when she would go out would speak to her as if she was a child. Huntington’s does not damage your intelligence per se, but indirectly. The part of your brain that we would consider having the IQ, the frontal lobe, isn’t damaged itself but affected by damage to other parts, mainly the basal ganglia.

The best way to explain the behavioral and cognitive changes is to picture a company. The boss is the frontal lobe, part of the brain that controls high intellect. Part of the basal ganglia called the caudate, which suffers the most damage, is the secretary because it delivers messages from the senses and the rest of the basal ganglia and organizes them The rest of the basal ganglia is like a foreman for a work crew, as it controls a lot of the muscle movements and receives some signals from the senses, muscles and nerves. The muscles, nerves, and the rest of the body can be considered your work crew.

With the basal ganglia, especially the caudate within it, being the most affected, you have a company with a damaged foreman and secretary. The work crew is sending messages about depth perception, sight and sound, and things like the expression on a person’s face when they are teasing you. The secretary is either not sending these signals the way they were received or is disorganizing them. The boss cannot decide on an appropriate response to the person talking to you that is teasing if the secretary merely sends the exact words, but not the joking tone or the smile it was said with. The boss might have no other way to see it but that this person is verbally attacking them and then decide to become angry. And in cases the boss decides to stay angry for awhile because the secretary does not give the message that the responses have worked and it is okay to stop being angry. The boss assumes that the person they are angry with hasn’t got the message yet, so it is not time to stop being angry.

Also, people with Huntington’s do not have exactly the same memory problems as those with Alzheimer’s. With Alzheimer’s , both recognition and recall can be damaged. Not so with Huntington’s. Recognition is still there, recall is what is damaged. This means that the information is still in the filing cabinet, but the boss has a hard time finding it because the secretary has no organization system. But as soon as you hand the boss the information, in this case jog a person’s memory by giving cues, the boss immediately recognizes it, knows what it is and understands it. It was just hard to pull up. This is why if you ask a person with Huntington’s what they had for breakfast they may not be able to tell you, but give them choices and they will. Without choices, the boss can’t rely on the secretary’s filing cabinet to help find the right answer. The boss has to run down the entire list of everything possible to have for breakfast to find the right one. With choices, many of the possibilities have been eliminated. This is also why it is hard to make decisions when you have Huntington’s. The boss isn’t getting enough information to make an informed choice quickly.

People with Huntington’s are characterized as being stubborn or mean. The problems discussed in the previous paragraphs can shed some light on this stigma. One, it is hard enough to make a decision without giving up or being distracted. This is why it seems a Huntington’s patient has a one track mind. They have to stick to one subject, decision, problem, etc at a time, otherwise nothing will get done. As for being mean, that can be explained by the example given above that relates the person staying angry because they could not tell if the intended target had noticed they were angry.

So, to sum it up, if someone asks me if Huntington’s damages a person’s intelligence, the answer is yes and no. It doesn’t damage your IQ, or the frontal lobe, so no. But it makes it to where you cannot make the full use of your intellect, so yes.

If you wish to donate to help work toward’s a cure, contact the Huntington’s Disease Society of America. This explanation was inspired by much research, a great deal of which came from the HOPES group at Stanford University. They came up with the frontal lobe=boss and caudate=secretary metaphor, and I ran with it, added a bit to the metaphor and added my own experiences and examples. If you wish to contact me, reach me through my father’s store at, [http://www.bargainbedding4u.com].