Saturday, May 14, 2011

Good and Bad Days

I usually say that I don't live one day at a time ~ I live one hour at a time. My symptoms change from one hour to the next, as I described in my last post (ups and downs), but lately I have definitely had some days that were much worse than others. I will have a couple of days with just my "base level" pain, and no major times of dystonia or dyskinesia. But the last few days I have had several bouts of each. Last night I had about an hour of full body muscle cramps so severe I could hardly breathe. I had to wake up my husband and he helped me to calm down and breathe.

My husband is taking on more of the cooking and cleaning. This hasn't been easy for him ~ I sometimes wonder which of us has a more difficult life, me with the pain and disability or him with having to take up the slack. My daughters both think that they have way more chores to do than any other kids. They are especially disgruntled at having to wash dishes. Apparently we are the only family in the western world without a dishwasher. They will concede to the fact that there might be a few families in Africa who also wash dishes by hand, but we are definitely the only holdouts here.

Basically, Parkinson's disease affects the whole family. 

Sunday, May 8, 2011

The Ups and Downs of On and Off

The Honeymoon stage is over and I am now in the stage of Parkinson's that is called "On and Off" - I know, the technical terms are tough to keep up with. On and Off means that my medications don't work smoothly any more, so everyday I ride a roller coaster of symptoms, usually with a few hours of "on" time where I am almost pain and symptom free.

In the morning, I go through a dystonic stage. This means that my muscles and tendons cramp up - my fingers and toes curl up, my feet turn inward so that it is impossible for me to walk (I used to try to walk, until I broke a bone in my foot), and my whole torso and my neck get twisted. This human pretzel routine can last anywhere from a few minutes to several hours. It is more painful than giving birth without medication, and I know because I did that twice. This is worse.

The thing that keeps me going is knowing that it will end. If I had to experience that kind of pain all day I would be begging my doctor to put me out of my misery. After the dystonia wears off, I get my good hours. Even then, I have to be careful to not overdo it, or the next stage will start too soon. Yesterday and today I had the extremely embarrassing problem of not being able to get to the bathroom on time. Fortunately, I just have to wait a couple of hours,, and then I can clean up after myself. I'm not looking forward to the days when I will have to rely on my daughters or a nurse or home care worker or someone to take care of me.

In the evening, I usually go through a phase that is difficult to explain. I can't stop moving, which is called dyskinesia, but I am too exhausted to do anything. It's emotionally draining, although the pain is not quite as intense as dystonia. Usually the pain gets worse as the evening goes on. With medication, I am able to fall asleep, and then it starts all over again.

I am not saying this to complain about my life, and I don't think that I deserve any praise just because I have a nasty disease and I am still alive. This is just my life right now. It is what it is.