Parkinson's Misery

Misery is a major Parkinson’s symptom not usually mentioned in PD medical literature. PD misery is not an early symptom often taking a few years too show. When present it can be worse than the main physical symptoms of tremors, slow movement (bradykinesia), muscle rigidity, impaired posture, and poor balance. They are physical symptoms that make the activities of daily living difficult but Parkinson’s misery makes your life … well really miserable. There is no better word for it. What  exactly is it? 

People who do not have the disease ask me to describe PD misery but no matter how hard I try they don’t get it. They understand the words but the only way to fully comprehend it is to have the disease and endure the suffering and distress knowing there is no cure and that it is only going to get worse. Let’s be clear there is nothing noble or redeeming about “the turbid ebb and flow of Parkinson’s misery.” It has neither hope nor “joy, nor love, nor light, nor certitude, nor peace, nor help for pain.” You have to experience it to know it and each PWP experiences it a little differently.

PD misery is both physical and mental. Physically the misery feels like being imprisoned in your own body, trapped in your symptoms without possibility of relief or escape. It is an uneasy feeling that something is wrong with you and there is nothing you can do to correct it. The emotional reaction adds to and intensifies the physical symptoms. Misery comes and goes with varying intensity. Basic misery is when your body feels out of sorts and every part of you feels bad. Full blown misery is when anxiety kicks in as well and the misery level moves up several notches and the discomfort, unease, distress, and suffering increase to a torment. It is not always present but when both the physical and mental are in full bloom it is the worst of the worst and completely defeats all my good intentions and resolutions to fight Parkinson’s and not give in to the disease. It is stronger than I am.

Misery has a mind of its own and like all PD symptoms affects each of us differently. I can’t predict when or why it comes and don’t understand why it lessens and leaves. I was having a decent week. My symptoms were manageable and no misery. I had a good nights sleep followed by an enjoyable day when for no discernible reason the full blown misery settled in, laid me low and took over. It tormented me for hours and then mercifully left only to return again and make the rest of the day hell.

What helps? Not much once misery sets in but I think you can help prevent it to a degree by being socially, intellectually, mentally, and physically engaged. My PD seems to lessen when I am with people and I sometimes forget that I have the disease. The same is true when my mind is occupied so feed your brain. Accept that you are miserable so it doesn’t turn into anxiety. Meditate and breath. Take slow deep breaths to relax. Light exercise sometimes helps if I am able to do it. Exercise is my friend. It makes me feel healthy. PD affects me less when I feel physically okay and exercise is the one thing you can do to slow the progression of the disease. Showers, breathing slowly and deeply, walking, old peaceful black and white movies. The understanding and support of family and friends and sleep, wonderful refreshing sleep, if I can.