When we talk about HD, we talk a lot about good days and bad days, however most people don’t really understand what that means. When I tell people my mom has HD, their immediate conclusion probably looks something like this:
But that is far from the truth – for now. The reality is that Huntington’s is a slow progressing disease for most patients. So if you see a patient several days in a row, you might not notice a significant difference from one day to the next, but months or years in between visits can be like seeing a totally different person.
What good days and bad days really means, though, is that some days it is almost like nothing is wrong. A person can be organized, efficient, productive, remember things well, and hold conversations well. What happens on bad days is basically the opposite of all of that. On a bad day, there is a very apparent disconnect between thoughts, actions, and reactions. On a good day, you could have a conversation like this:
“Hello. How are you?”
“I’m fine, how are you?”
Without any problem. On bad days, that conversation could be more like:
“Hello. How are you?”
Long pause…..
“Hey.”
Long pause…..
“How are you doing?”
“I’m ok, how are you?”
Long pause…..
“I’m ok. How are you doing?”
It takes longer for an HD person to process the information given to them. Bad days affect everything that they touch. It could make them clumsier, they could drop more things or stumble more frequently, or they could not be able to remember very well. It manifests itself in numerous ways.
One of the primary factors in dictating good days or bad days is sleep, much like it would be for anyone. Another factor, however, is whether they are following their typical routine or not. Having a set routine is very good for someone with HD because it allows the processes to become ingrained so they are less easily lost over the course of the disease. It also helps the person retain their ability to do whatever things they are doing within their routine.
My great uncle was not diagnosed with HD until very late in his life. He had a farm, and so he would have his daily routine of breakfast and work and he continued to do that even after he was diagnosed with HD. It helped him retain those skills, so he was further along when the movements stopped him from being physically able to do those things. Every day for an HD person is truly unique, and every person with HD has a unique experience of the disease. The hard part is to be thankful and happy with the time that you have while there are more good days than bad.
Sometimes I find myself pausing to take in a moment; a conversation with my mom where we are both laughing, going to the park or the beach together, talking about books we have read and crafts we enjoy. In those times I will take a moment and really take in the scene. How my moms face looks when she laughs, the way it sounds, how good it feels to be talking and joking with her. I want to remember it all, to soak it in, so that one day when we can’t do all of these things anymore, I will have the memories. One day, the bad days are going to outnumber the good and be much worse than they are now, so I try to be grateful for having those moments with her in the first place.
The thing with Huntington’s disease is that it is a one way street right now with no u turns. Once you are diagnosed, you know where it is going to go. In a way, that can actually be liberating. You no longer have time for tomorrow or someday. You have to live your life right now as though you won’t get any second chances, because you might not.
Photos:
sleepdeprivedmommyoftwo 