This weekend we learned a new section of choreography in the medicine dance. Many of you know this dance. Where the doctors try all different kinds of medicines that are supposed to solve this or that problem, only to find they don’t work, cause more problems than good, and then they give you another medication, and another, all causing their own problems, on top of the problems you already have.
We had a rough time this weekend because Mom started a new medication which is supposed to help her sleep. Mom’s excessive fatigue during the day limits her activity to, on average, three hours a day, and the rest of the time she spends sleeping. Her doctor suggested that while extreme fatigue is common in Parkinson’s Disease, maybe we could lessen it by helping her sleep better.
Mom has REM sleep behavior disorder (RBD). REM sleep is dream sleep, and during this time your body is paralyzed except for eye movement and breathing. This is good because physically acting out your dreams would be a problem. However, many people with Parkinson’s have this RBD which means they are not paralyzed during their dreams and they act them out. Also, the content of the dreams are very similar for all patients. In these dreams a loved one is being attacked and the patient is trying to fight off the attacker. Some people while acting out these dreams hit their partner in bed and so this can cause a lot of problems. For Mom though, she mostly just talks a lot, screams out in her sleep, and spends most of the night in a state of barely conscious extreme anxiety. I remember she told me of one dream where an animal was attacking our son Jeffrey and she was trying to fight the animal off.
This means that Mom does not get a good deep sleep because of this sleep disorder. There is a medicine that can counteract RBD and the doctor thought if she gets some more restful sleep, that she might be less tired during the day. So, we tried it for a few days.
This medicine Mom took is supposed to be fast acting, supposed to be short lasting, supposed to make her less tired during the day, supposed to have her wake up well rested, and supposed to get rid of the nighttime hallucinations and dreams.
Well, it is fast acting, got rid of the hallucinations and dreams, but made Mom unstable, less able to walk, and so tired all day that she could barely get out of bed. If she did wake up she would stare off into space and barely move. She would say she was going to go get dressed, and then just sit there and stare at her coffee cup. The medication really immobilized her and made a person who is already unstable and who falls easily, unable to walk without assistance.
So, we will call the doctors again and see what they say. What the will probably say is the medicine was not supposed to do those things but medicine interacts differently with everyone. “We will try something else,” they will say. However, often this trying something else all the time just makes life more difficult and scary for us all. The whole thing is just frustrating, and very impersonal.
The dance will continue and I just hope no one falls and gets hurt.