Living With Parkinson's Post #8..My Daily Fear and the Remedy

Each morning of my unusual, tempestuous, adventurous, wacky, bumpy, lovely and exciting life, I have the same thought; "What will today bring?" Then my second thought is always, "How much time will I have to function as a 'normal' woman today?" Most days I know the answer right away. Either, I can't wake up for the life of me because I took my nerve pain medicine too late the night before or I have no movement ability in my left hand or I haven't slept more than 2 hours because of, again, medicines that help pain but keep me awake. A small % of the population react to narcotic medicines this way. I happen to be one.

Some mornings my 10 year old daughter comes in and turns off my alarm that has been beeping for 5 minutes and we fall asleep together for another 5 minutes. She then becomes the mom and tells me to get up. She goes back to her own room to start her morning routine. Always there is a second visit to my room to say 'get up mom', which finally does the trick. I groan and roll to my side before sitting up to prevent any further back pain, a constant for me, and somehow manage to get out of bed. After the initial vertical position I am good to go. We took this picture one morning before school just before dashing out the door.


My fear here is the unknown and how I will handle it this time. I have many choices of activities to keep my mind and hands busy. It rarely involves housework though eventually I give in to the mess. I always have a sewing project in the works, I can start another drawing, I can practice my out of tune piano, I can try to dance, record a ballroom choreography idea (one of my favorite past times), take some pictures, get on the computer, read my scriptures (another favorite), call a friend or on really good days even visit a friend. I passionately love all of these things. But.... my body, such as it is, can handle only one of these activities in a days time, or within just a few hours. Then it's rest, relax, recharge. Until very recently, I have been the kind of person that never stops until I physically fall apart. I have learned a slow, hard lesson. Anyone know what I'm talking about?



So, if I get through one hour of sewing and my back is hurting too much and/or my hands 'leave me' , how will I handle it? If I have agreed to accompany a close friend for a vocal performance at church and my back hurts too bad and/or my hands 'leave me', how will I handle it? If I've been looking forward to our ballroom dance night all week and the very hour before we are to leave I'm hurting or not moving, how will I handle it? Will I have a 'down' day or a 'functioning' day? Will I be alone all day with my thoughts and my suffering body? Will I be able to do anything for my 5th grader today? Or will she be taking care of me? Will I have to go out in public looking like a stiff, zombie? Will I fall asleep driving my daughter to school or home from school? Will I have an appetite today (not usually)? This is my husband's biggest worry for me.

My fear here is again, the unknown. I have not been given psychic powers concerning the future of each day so I do what the rest of humanity does. I wing it. I get help when I need it. I sleep when I need it. I cry when I need it. I eat when I can. I keep taking my meds. I talk with God anytime. I talk with my husband before and after work; with my kids when they are present. I am lucky enough to be able to still have my parents to talk to on a weekly basis. And last but not least, I talk with my good friends who are not afraid of my disease.



I have recently started daily listening to 'guided imagery' and 'affirmations' to heal and help pain. I would highly recommend it. I have a link on this site to a site full of wonderful 'guided imagery' recordings you can download. It has relieved a lot of 'inner turmoil' type thoughts for me, bringing a better day because my body feels better.

Even with all of these positive tools, some days I just feel completely devastated, alone and hopeless. It's the stuff of life, it happens. Then luckily....I have a new day to try again. Really, my one true consolation is that I am not the only one who suffers in this world. Others have it much worse. With or without Parkinson's, I have a lot to offer and I will keep trying to offer it to any takers. Who wants what I have to offer? Interesting question.

I love finding the answer....love it, love it, love it.