I am in the early stages and you would have to look hard to see the Huntington’s Disease. My HD is on the inside working its way out. I have often wondered which is worse. Having chorea and an obvious disability or looking "normal" but having many invisible symptoms?

I am not alone. There are others in the early stages who are living with the "invisible symptoms" of HD every single day, those who can not show or tell those around them all the different changes they can feel on the inside and feel isolated because of it. So today I will tell you about the HD that no one sees.

I must say that I miss my memory the most. I can not remember directions, some past events, conversations, or which teeth I just brushed. I hesitate to make time commitments because I am automatically under the pressure to remember. I am often in the middle of a conversation when I forget what was just said. Or I manage to follow the whole conversation and the moment someone asks me what I think, my mind goes blank. I am sometimes accused of not listening.

Sensory overload is an on going problem for me. I have become a hermit because I find the outside world too much. I know that we lose the ability to block out background noise, and at times it can be a big problem. I find that having HD is like trying to watch/listen to 6 different TV shows at the same time and catching enough of each to make sense of things. My mind wanders easily to whatever background noise is happening. I find my attention drifts in and out. Sometimes the harder I try to concentrate on what someone is saying, the harder it is to stay focused.

I have become incredibly self conscious around people who do not know I have HD. I tend to swagger, slur or klutz out. I am always afraid of making a fool of myself by saying or doing the wrong thing. It stresses me out to the point that it becomes a self-fulfilling prophecy because stress accentuates all my symptoms.

It seems like I have a certain allotment of energy each and every day. Once that’s gone, that’s it. I find that I am the best in the morning and afternoon, but come evening my mind is foggier and my body clumsier.

The panic and anxiety attacks can be a real pain too. The urge to run and hide can be all consuming at times. I never know when it is going to happen. That makes it tough to commit to things too. Panic attacks have kept me out of the dentist chair for a few years now. Sharp metal instruments and involuntary jerks can be a lethal combination. I had my first involuntary movement in a dentists chair about 5 years ago.

I seem to have the same muscle strength that I have always had, but I have absolutely no muscle endurance anymore. My arms tremble and pulse under strain. If I can rest my arms against myself or pivit on my elbows I can do alright. But having to hold the weight of my arms makes my upper arms ache. I have found that I can do chores where my arms are in the down position, but can not last if my arms are away from my body. I tire easily.

I found a trick for showing my "invisible" movements. If I press my hands together and apply pressure, then start raising my arms up until they are way up there, while still pushing my palms together as hard as possible, I can make my arms jump like crazy from the physical strain. If someone puts their hand between mine when I do this, they can feel it, bigtime.

My body-in-space is totally out of whack, and I have the bruises to prove it. I had no idea just how many things my body did for me automatically, until I had to stop and concentrate on them. Steps are dangerous. If I am not paying attention I half-step. Rather then step fully on the step, half my foot is unsupported.

I seem to have a magnetic strip that runs on either side of me. I feel myself being pulled into doorways, or people standing close to me. It is embarrassing to bump into someone because it looks so deliberate. It seem like I am not pulled forwards or backwards, just sideways.

If I try to look straight up above me I fall backwards every time. Looking up throws off my balance. Balancing my weight on one leg makes me very unstable. It makes sense that walking and stepping is effected.

I transpose my letters all the time. My spelling has become awful. I have to spell my name inside my head when I am signing something. (You know your memory is bad when you have to think about how to spell your own name.)

So I have a bad memory, bad balance, panic and anxiety attacks, sensory overload, no body-in-space skills, and my muscles tire easily. It started out as internal tremors about 5 years ago and has been gradually getting worse. I am jumping and jerking a lot now. I know it is the chorea on the inside finally working its way out. My right leg kicks quite often now. My shoulders and head drops sometimes.

I feel a kind of relief with my symptoms finally becoming visible. I guess because it proves that the HD is real. I think having the invisible symptoms is just as hard if not harder then having the obvious HD symptoms, because people expect more of you. Or people think that you don't have Huntington’s because you "look" normal to them. They would never know that you were disabled, unless you told them...

When family and friends ask me how things are going with the HD, I always wonder how honest they want me to be. Seeing as many of my symptoms are only visible on "bad" days, and on bad days I stay home, what they know of my symptoms is based on how much I care to share with them. So how much do I say? How much is too much, and how much is not enough? There is such a fine line between informing them, and breaking their hearts. I am very fortunate to have a good relationship and a strong support network of family and friends. A lot of people do not. I am one of the lucky ones.

I know I should be freaking right out with all the changes that are happening, but I am not. I accept it for what it is and realize that worrying about tomorrow will not change tomorrow, but only take away the joy from today. I have been at peace with my Huntington’s for several years now. I just take it one day at a time. Just like anyone else dealing with anything else.

For a long while I was stuck somewhere between anger and depression, but I realized that being mad or sad about the HD only wasted both my energy and the precious time I have left. While I do not have a choice in having HD, I still have a choice in how I chose to live my life and whether I see myself as blessed or cursed. It truly is a matter of perception. You can let the things that happen in life make you bitter, or make you better. That is sometimes the only choice we always have...