After years of wondering just what my "problem" was, I do admit that I am relieved that my problem finally has a name. I have always been very different from others and had a really hard time fitting in with those people around me. And I knew many years ago that there was something wrong with me because of my very odd feelings and behaviors. My "quirks" if you will.

Imagine my surprise to see each one of my unexplained quirks listed under the emotional and cognitive symptoms of Huntington's when I was 28. It was a real eye opener.

The thing about the list of emotional and cognitive symptoms is that many different life experiences can give you all the same emotional problems on the list. I think the difference is that people with HD feel all of those things to a much greater degree. I know for myself that my emotions were always very intense and right at the surface. It has magnified as the years have passed.

I know that people with HD lose the abilities to regulate their emotions. I am famous for both over reacting and under reacting. Perhaps my greatest fear in going out in public is that someone will be short with me and I will burst into tears. Which has happened a few times. Or clutz out, or say something inappropriate or out of the context of the conversation.

I find the outside world is very loud. I noticed quite some time ago that some of my senses seem to have increased. My sense of smell is so acute that smells can really bother me. My hearing can no longer block out the background noises. I have also become very ticklish. A light touch can set off the twitches, or cause an involuntary movement of my leg. I also have increased skin sensitivity and have found that even a crease in the sheets can be quite uncomfortable. I feel like the girl in the story the Princess and the pea. I bet you I could feel that pea through several mattress.I have found that sitting on soft cushy surfaces absorbs some of the tremors, and hard surfaces seem to amplify it.

I have not choked on solid food yet, but do mis-swallow liquids quite often. The muscles in my throat also seem to be out of sync. I also have had a few close calls where I actually forgot to chew, and unfortunately it was meat. I now cut my meat very tiny so if it happens again then it is swallow size.

I use to have a problem brushing my teeth, I kept choking on the toothpaste because it was sliding down the hatch on its own without my swallowing. Now I tilt my head down when I brush my teeth. It makes me drool toothpaste but I am no longer choking on it. I find my gag reflex is very sensitive these days and a prolonged coughing fit can make me gag. Brushing the back of my back teeth has become a challenge too becuase of this.

My arms tire very easily without support, and can ache within 60 seconds of having to support the weight of my arms. My elbows are always dry and cracked because I use them almost everytime I use my arms. I have mastered the pivot. My elbows are always on the table when I eat and I use my hands instead of cutlery whenever I can. I have to eat on a kitchen table, TV trays are a nightmare because I can not put the weight of my arms on it.

Emotionally I have my good days and my bad days. I am lucky that I have little to no stress in my life, but the damnedest things can set me off. My husband has learned not to offer to help me do something if I am struggling, unless I ask. I know he is trying to help but it makes me feel disabled when he offers to take over. At first he could not understand why I would get angry at him for "helping" but he soon realized that if he waited until I ASKED for help that my attitude was a lot more appreciative. Asking for help does not hurt my pride, but being offered help prematurely sure does. I prefer "If you need any help, please let me know". This suggests that the person believes I can do it, but is standing by in the event I can not.

I try hard to be patient with my symptoms but sometimes they can really grind me. I find I can go from dead calm to over the top anger wise in mere moments. It is a little scary. If I am down, I like to be comforted - but if I am mad I need lots and lots of space. I take a self-imposed time out when I feel it building. But unfortunately I do not always have the chance to feel it build, sometimes it is instantaneous and I find myself apologizing to loved ones for the outburst - and feeling bad about it. Being overheated is one thing that makes me instantly irritable.

My family likes the fact that I have a high level of awareness about my symptoms. It makes it alot easier to deal with me, well at this point anyways. I often wonder though how many symptoms I miss, for all the ones I notice. I always ask for feedback from those around me regarding what they notice. Things like talking too loud, or fast, or trailing off at the end of the sentence and not finishing it. This is very useful feedback and because of it I make a concious effort to talk quieter, slower and to take a deep breath in before I start the sentence. I had never noticed before that my words had bursts of high volume.

I am also fortunate to have an understanding husband who expects nothing of me on a day to day basis. A good day means production, a bad day means perhaps cereal for supper. But he never complains. He understands that my energy levels are constantly changing and does not hold me to any level of expectation. Some days I have it in me to be a wife and helper and some days I just don't. That is what can make planning something ahead of time very stressful. I can never guarantee a good day on a certain day. I can give my body what it needs (sleep, food, and not too much physical exertion), but that only betters the odds of a good day, it does not guarantee it.

My internal tremors are constant but often when I stress my body or emotions then the tremors are so strong they become muscular jumps and jerks. These days it seems I do not have to stress my body to get the jumps and jerks. I notice many in the run of a day, but they are usually small movements.

It is my right leg that has been effected the longest. It went from jumping once a week( years ago), to too many times to count--daily. Especially at the end of the day when I am tired. My head drops a lot these days as well, and according to the HD clinic I see it is my muscles relaxing at the same time. Same as my muscles can tighten suddenly and pop something out of my hands, they can also relax at the same time. I am amazed that HD has not effected my reflexes at this point. I manage to catch about 80% of the things that pop out of my hands, in mid-air. All in all I have made some incredible saves.

My movements have become alot more visable in the last while. When you know what you are looking for then you will see them regularly. But if not, you would assume by looking that it was a purposeful movement, until it happened over and over again. I am aware of what is purposeful, and what just "happened" for no apparent reason. I am always amazed at how many of my movements are undetected by those around me. I can not miss them.

My leg is the strong movement item, sitting on the same sofa you would feel the jolt of the jerk/kick. I have kicked a few hard things that just happened to be there when my leg kicked - like the woodstove. I mashed my toes on the one time.

The restless movement is something else too. I am constantly changing positions or switching around, my body is restless. Sometimes I try to sit completely still for 5 minutes and not move anything. I really have to concentrate and sometime the urge to move is too much. I play this same game in the mirror with trying to keep my tongue still, no such luck. I notice I bite the inside of my cheeks when I sleep. I always seem to be nursing a new one and when it goes away I do it again. I also have the occasional involuntary jaw clench/bite. My teeth with suddenly slam together without warning, I have not bit my tongue yet but the writing is on the wall, I'd say.

I have had a few close calls with falling, and finally about a month ago I did fall. I got up from the kitchen chair and turned around too fast towards the sink. I tried to catch myself with the chair but we both tipped over and I landed on it. I have done a simular thing once before on cement steps, I whirled around and landed on my butt at the top of the stairs.

I find narrow hallways affect my balance - as does looking up, or closing my eyes. If I transfer my weight to one leg the rest of me trembles hard from the strain, so I can understand where with walking I can lose my balance on stepping. I find I really have to pay attention going up or down steps as my body no longer automatically lines my feet up. Half stepping on stairs has not cost me an injury yet, but once again the writing is on the wall. I only have to be distracted for a moment for my feet to fail me.

I have a lot of little systems set up to help me with the day to day challenges of living with HD. Some things take me longer, but ultimately I still make it to the finish line. I think sometimes that the reason it takes people with HD longer to do things is because they have to be able to really think about it while they are doing it. And trying to concentrate with any kind of back ground noise sometmes makes it even harder.

I cannot seem to organise my thoughts in my head anymore so writing it out on paper helps a great deal. To-do lists and memos to myself are ongoing, I should have bought stock in those little memo pads! I write down anything I must remember. And I set the egg timer for many things. It has taken awhile to learn to redo things, but now years later I automatically do things the new way, so I do not notice it as much.

I still feel thankful for the symptoms that I do not have, and for all the years I still have left ahead of me. And the chance to be cured by RNAi or cell implants. There is every reason to believe that my HD will be stopped before it is too much more advanced. My faith in this belief is complete.

Meanwhile I will continue on living life and laughing at every possible opportunity. Life is precious. And writing about what it feels like to be me and have HD is soul food to me. Trying to put these things into words can be a real challenge sometimes, but being able to put my feelings into words is very theraputic.