Having HD can and does make my life extremely complicated. Everyday things that can come easily to other people can become a huge struggle for us. Sometimes I feel like I am somewhat of a ticking time bomb because I have done incredibly well to make it as many years as I have with this disease. I know without a doubt that I am on borrowed time right now. The need to make every single day count before I progress too far is ever present.
The fact that I am very easily confused add a lot of stress to my daily life. My short term memory is a big void a lot of the time. It is like I can not file short-term information into my long term memory files anymore. Sometimes there can be a problem and a solution is talked out and the problem is resolved. Next thing you know my mind forgets that that problem has been resolved. My mind loses the memory of the solution and is focused on the problem again. Sometimes multiple times on the same problem.
I leave myself a lot of notes, and tie plastic bags to my purse to remember to bring what ever is inside with me when I go somewhere. As soon as there is something I need to remember to do I feel under immediate pressure. The more things I have to remember, the more pressure there is. Writing it down in multiple places is always a good idea too.
My energy can be taxed quite easily too, Standing in place for ten minutes or more at a time is one of the hardest things for me to do physically. I can walk for hours and it does not bother my body but trying to stand in one place makes muscles tired. If I can pace then its fine but standing is a big energy drain. My muscles relax and let go of stuff a lot too. This week's casualty was my big tin of instant coffee...I was refilling my daily use bag when my hand let go of the tin. What a mess! I was so glad there was no one around me then to hear the cursing.
Objects without a handle, especially spilly ones are an accident waiting to happen. The next morning it was a one litre thing of creamo that my hand suddenly let go of. Much bigger mess then the instant coffee. So this weeks lesson is for me to try to retrain myself to try to remember to grab spillable containers with both hands. Logically my mind says that if I trained myself to lift these things with two hands then when one hand suddenly lets go without warning again the other hand is still on it.
My muscles take awhile to wake up in the morning too. I usually lay in bed for at least 20 minutes, because my muscles feel kind of weak when I first open my eyes. I enjoy long soaks in the tub but sitting in that hot water for even a short amount of time liquifies my muscles. I think it is because heat relaxes my muscles way too far. My muscles on a good day are tightening and making my hands jump open, or relaxing and letting my head or knees drop. Chorea is often associated with the muscles tightening and jumping but the other opposite side of chorea is the muscles suddenly and involuntarily relaxing. That will be when I feel my knees threatening to buckle if I do not sit or lean on something. Leaning is almost as good as sitting because you are sharing your some of your body weight with a solid object, it literally gives you support.
One good thing about my having HD is that after all those years of counting calories I now am counting them the opposite way. I make sure I eat a lot of protein to give my body energy. Most people with chorea need to eat between 3000-5000 calories a day depending on how strong their movements are from occasional movements to constant chorea. Chorea burns a lot of calories because your muscles are moving all the time. Regular chorea can cost you a lot of your daily energy too.
Having extra weight on you helps to slow your metabolism down. Otherwise as the chorea steadily increases throughout the course of the HD the metabolism gets faster and faster. So fueling the machine becomes one of our few ways to help keep the HD at bay. High calorie healthy foods are not that easy to find, so sometime empty calories might have to come to the rescue. It all boils down to keeping a higher calorie intake verses slowing the metabolism to stop weight loss.
Having a calm and quiet living environment is essential for someone with HD. Our minds are maxed out on their own, so it does not take too much to confuse of overwhelm us. My minds wanders somewhat with negatively effects my ability to lock onto alot of things and slows my processing time down to a crawl. I do not like having to make decisions either, especially high pressure, time sensitive or on-the-spot-ones. I can feel easily frustrated sometimes when I do not understand something that I should be able to easily get, because other people get it. I can not keep track of facts or memories either so that makes making and "informed decision" very difficult because you do not have the necessary background data. This can make me look and feel like a confused child around some people.
I read somewhere that "when the caudate nucleus has deteriorated, emotions are improperly regulated, causing an increase in feelings of frustration and irritability. Several factors may contribute to the feelings of intense frustration: Hunger, pain, an inability to communicate, changes in routine, loss of ability to perform certain tasks As well as trouble learning new things, remembering a fact, making a decision, moodswings, and depression. As the disease progresses, concentration on intellectual tasks becomes increasingly difficult." These words help me to interpret what is happening to me and to understand why I am struggling with these various HD symptoms.
My chorea had dropped off quite a bit after I left my marriage 2 years ago, But since then because two years have now passed my chorea has still done two years worth of progression. My hands open wide lots of times a day on their own. Having less stress in my life is still going to buy me a bunch more time, however there is no way to stop or slow the natural progression of this disease.
Time is not on my side as it once was. But I still have faith that a cure will come in time for us and our children...
Thought for the day- "A psychologically mature person looks for the positive in every situation, for no experience is entirely negative."