My big shock began in June 2016. Two years prior to my diagnosis I noticed strange things happening with my right hand.
I began to drop things, cutting vegetables became a problem, putting on jewellery and certain clothes was difficult.
My GP referred me to a Neurologist and after a nerve conduction test, I was operated on for carpal tunnel. There was no improvement and I developed pain in my shoulder and I was referred to an Orthopaedic Specialist who operated. This was followed with weeks of physiotherapy. With no improvement, I was referred for more nerve conduction tests and a brain scan.
When I returned to see the Neurologist my husband was working in Africa so I asked a friend to take me and, fortunately, to come in with me. Intuition told me I was about to get some not so good news, I was right.
The diagnosis was CBD. I needed to Google to understand the disease and the implications. I Skyped my husband in Kenya to relay the dreadful news, not an easy task as he had lost his brother to cancer. Tears were shed. We had another hurdle to jump but together with our wonderful son who is partially deaf we can, and do, cope every day with the awful affects this disease.
My saving grace came when I was contacted by Sue Ryder in Wokingham, the staff there showed me that there is a life after being diagnosed terminally ill.
Barbara, a volunteer, suggested I try painting watercolours. I laughed, how could I paint? I am right handed and that is the arm that no longer works, and my art teacher at school suggested I gave up art and take history as she felt I was no good at art.
I am now painting watercolours and loving every minute of it. I think my paintings are pretty good (excuse me if I blow my own trumpet) and I am incredibly happy it has given me a new lease on life. A huge thank you to Sue Ryder and the wonderful staff and volunteers who gave me the courage to re-find my life which has meaning and purpose again. Barbara’s encouragement has meant a lot especially as I am painting left-handed – perhaps I should have tried that when I was at school!
Living with CBD is awful. It is a degrading, lonely disease that robs you of everything. It takes away your dignity, confidence and most of your will to carry on. You begin to feel you are a burden on your family and friends and try to hide away. I have wanted to end it all but the hurt I know would devastate my loved ones and this outweighs the pain and fear.
Most days are happy and carefree. My art brings me the freedom and to lose myself in each picture. I can be happy and a whole person minus the ailments. I will fight to the bitter end enjoy happy times with family and friends.
I have many a ‘pity party’. I am the only one invited and the tears roll off my cheeks but it’s my time to wash the pain away and make the most of the time God is granting me. I feel blessed to have time to make amends where necessary and pour out love to my precious family and friends.
I want each day to count towards a day closer to finding a cure eventually for PSP, CBD, Parkinson’s and MND. To all the sufferers, be strong don’t let your disease rule you. Fill each moment with positive thoughts let the tomorrows take care of themselves.
I am going to be positive and fill my days with painting, laughter and fun family times. I have a lot of living to do, so beware the ‘Tasmanian Devil’ (nickname for my alien arm) and ‘Dammit’ (my leg with a will of its own) I am fighting back!
