Why Did you Start a Blog?

People always say to write about something you love or something that you are passionate about. For me, there are 3 things I am truly passionate about: my children, scuba diving, and Huntington’s Disease. 

 
While I might not discuss Huntington’s Disease with everyone, I think about it every day. It affects many aspects of my life and how I view the world. Is it a fun topic to talk about? NO. Watching someone you love go through it or going through it yourself are probably among the least fun things to talk about, ever. But they are things that need to be discussed, whether the conversation is comfortable or not. 

Since I know that very few people have any kind of idea what I’m talking about when I say Huntington’s Disease (HD), I will give you an explanation of the disease by the Huntington’s Disease Society of America.
 

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. https://hdsa.org/what-is-hd/

So I’m sure what you’re thinking right now is “OK, that doesn’t seem too horrible,” so let me illuminate the situation further. Having Huntington’s is like having Parkinson’s disease,  mononucleosis (MS), Lou Gherigs Disease (ALS), and Alzheimer’s disease, all rolled into one fun bundle of joy. The affected person loses memory and logical thinking processes, develops violent and uncontrollable body movements, and eventually loses all ability to take care of important needs such as taking showers, using the toilet, walking, eating, dressing, or generally living life in any capacity. Many Huntington’s patients end up in nursing homes due to their total dependence on others. Huntington’s also can make an affected person’s mental processes change. Someone who was once frugal could suddenly go on daily shopping sprees; someone who was neat and organized will lose all of their ability to focus on something and organize it. It can make the afflicted person mean, cold, and uncaring (whether they intend to be or not, but each case of HD is unique), or, on the flip side, can make someone outgoing and chatty. The disease destroys the process in the brain that would normally hold a person back from doing or saying a thing they want to do or say, so the affect it has is unique to each individual. 

A person with HD has a 50/50 chance of passing it on to their children, and the chance for the children to develop it 50% for each child. This means that if you have 4 children, all four could end up with HD, none could develop it, half could, 3/4, or just one child could become afflicted with the disease. Since it is a mutation of a gene, it is like being in a casino; you just have to roll the die and see if the outcome is in your favor. 

  
One final and important note about HD, is that it currently has no cure. It will kill you in the end. A person, once diagnosed, can live anywhere between 10-20 years before the disease becomes fatal. However, you are much more likely to die of something else (like choking on food – among the top 5 causes of death in HD patients) before that actually happens. The bright side, is that there are a lot of new medications being developed for other diseases that work on HD patients as well, such as the medication initially developed to control movements in Parkinson’s disease patients, but now used for HD patients as well. Medications for Alzheimer’s patients are being used the same way. Every day doctors are searching for things that will make an HD person enjoy a better quality of life for a longer period of time, and every day doctors are searching for a cure. We will continue to hope for a cure. 

Until that happens, I am going to write about what HD is like, how it affects me and my family, how it affects my children, and how we all cope.