Parkinson's, is debilitating and progressive. I notice the small changes as they silently creep up on me, making it painfully clear how this disease is unstable, unpredictable, and on occasion I'm knocked for six as yet another part of my life is taken away.
I have been sewing since I was five years old, and for many years made my own clothes, various things for the home and gifts for family and friends. Slowly, since being diagnosed with Parkinson's, sewing has become increasingly difficult. At one stage I realised the fine silk embroidery I used to do, was definitely a lost cause, and then quilting was added to the list. Using a sewing machine requires little dexterity for all I had to do was feed the material through under the metal foot of my trusty machine which does the work for me. But even this proved too much recently, unable to cut fabric or machine in a straight line.
I was with my husband and we were near a material shop, that beckoned me in. For someone who has always had a passion for sewing, the sight was almost like eye candy; shelves lined with beautiful brightly coloured cotton fabrics almost mesmerised me. Before I knew it, denial took over, as one particular pretty fabric caught my eye. Within a minute I had bought 2 meters of this gorgeous cotton material with the intent of making a simple garment for myself. Caught up in my enthusiasm, it wasn't till I began my sewing project the following day, that I quickly realised I can no longer even use the sewing machine, and that my abilities of sewing have now been completely stripped from me. I fought and struggled all day, refusing to give in to what was inevitable. I was so frustrated at being unable to complete, what for me should have been a simple project, that the more I fought it, the worse things became. By evening I was in such a state, I had literally made myself ill.Accepting one more thing I cannot do, is a hard pill to swallow, and it saddens me to have lost a hobby that gave me such enjoyment for so many years. It was with a heavy heart that I gave a dear friend who quilts the very last of my fabric and quilt batting. So the scores on the doors for today are Parkinson's = 1, Elaine = 0. But this wont keep me down for long. This ravenous disease might have stolen yet another piece of my life, but I won't let it break my spirit.
Due to October being Gaucher Awareness Month, my childhood story of growing up with a rare disease has been posted on a site "Stories from kids with rare conditions".