One of the toughest things about knowing that you or someone you love has a disease that will eventually claim their life is to wonder if this symptom is the onset of the disease. Is this the thing that will begin the downward spiral to the end?
Because Huntington's Disease affects each person in a different way and has such a wide range of symptoms, it is so hard to tell if that one particular thing is is the beginning or if it is just a one off type of thing that happens to everybody.
For example, all of sudden, you are having a hard time thinking of the right word to use in a situation. It's like you know the word and it is circling around in you brain just waiting for you to reach out and grab it, but you can't catch it. So, you start to panic. That is it! You are now in the thick of it and your life could end at any moment.
Slow down for a minute! Take a breather! Remember that everybody has that issue once in awhile. I know I do. There are so many times when I am sitting here typing away, the thoughts flowing freely and all of sudden, I completely forget the word that I need to convey what I am trying to say - like just now when trying to think of the word convey. Or, you want to say something to someone or ask them a question but the person is busy at the moment so you have to wait. In the time you wait, you forget what it was that you wanted to say. And you finally remember it hours later. I have no family history of Huntington's Disease, so that couldn't be what my problem it is. Instead, it is a simple need to pause for a minute and let the communicating part of your brain catch up with the thinking part of your brain. I am sure there is probably some technical and scientific explanation to it, but I don't know what it is, so I just say it in a way that I can understand. I just take a second to think about it and I can remember what that word is.
The key is to look at the big picture. If something like this begins happening more and more frequently, it very will could be that you are starting to suffer from some of the symptoms of the disease. What is the "frequency" that indicates on-set? I don't know. I am no expert on that. I can say that these two scenarios play out in my mind 3 - 4 times a week. At minimum. If I am having a high stress week, it happens a lot more. However, I recognize that each person is different so the frequency may be different for each person. You have to determine what your normal is.
I am not an expert on Huntington's Disease. I do know a bit from my research on this disease and my experience with Robert's family but I don't have an advanced degree or years of advanced study. What I can tell you from my experience is that if you live your life thinking every little thing is the on-set of the disease, it will only stress you and your family out. I have seen first hand in Robert's sister how extra stress can make the symptoms of the disease worsen very quickly. Stressing yourself you and putting the onset of the disease on you can stress you out and make the symptoms worse.
My best advice to anybody who thinks they are really beginning to exhibit the symptoms of the disease is to find a good neurologist that specializes in Huntington's Disease. It is important that you see someone that accurately understands the disease and the symptoms associated with it to properly treat you for Huntington's Disease. I shared in a previous blog about a neurologist we went to that didn't understand HD and prescribed Robert medication to treat the chorea part of Huntington's when what he really had was Restless Leg Syndrome (RLS). RLS is not a symptom of Huntington's Disease and the meds to treat it are totally different than the ones that are used to treat RLS. Which is why it is important to find a doctor that understands HD.
Once you have found the doctor you like, talk to him or her about your concerns. A doctor that specializes in Huntington's Disease will be able to talk with frankly about the disease and let you know if this is the beginning of on set or just a bad spell that everybody goes through. A doctor can do wonders in calming your mind. If you are having trouble finding a doctor that specializes in HD, visit Local Resources on the HDSA website to find one in your area.
Knowledge and Education are key in helping us all understand and live with this disease and the affects it has on our family and friends.
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