Talk at the hospital

You may not realise this, but it takes some preparation on my part when I have a public speaking engagement. I need to rest and take things easy for a day or two prior to the event. Due to Parkinson's my speech is sometimes soft, as if the volume has been turned down and it can sound kind of hoarse. There are special speech therapy exercises for Parkinson's patients, and a week ago I began to practice at home, to improve my voice. We have a high cathedral ceiling in the lounge, so you can imagine the acoustics, and how loud my voice echoed. Although I was alone in the house, (not counting the dog) I suddenly wondered if my next door neighbour could hear my speech therapy, which probably sounded like a screeching cat being strangled to death. Feeling embarrassed I asked my neighbour if she had heard anything strange that morning, but thankfully I found she had been out.

Showering, getting dressed, doing my hair and makeup all takes time and precious energy, however I think public speaking is extremely important. Talking as a patient from personal experience to an audience of either fellow sufferers offering support; educating and creating awareness to people who know nothing about Gaucher or Parkinson's, or addressing doctors giving a perspective they may have not heard before - to my mind makes this huge effort worthwhile.

I was asked to give a talk at a Gaucher Conference for a group of charming doctors who had come from around the world, so yesterday I travelled to the hospital, with my husband accompanying me, not only as my private chauffeur, but as always, he is by my side giving me endless support. Where I'd be without him - I do not know.

In an intimate conference room, I talked for 45 minutes and told my story of growing up with Gaucher disease and being diagnosed at age 44 with Parkinson's. Thankfully I had been asked to talk early in the day, at 09:30, which is when I am at my best. As the day progresses, by late afternoon and early evening, my condition starts to deteriorate. My voice was not at its best, despite having done some voice physiotherapy sessions to improve it, but I got my message across. I finished my talk by reading a portion of the poem that appears at the very end of my book which I think encapsulates my positive outlook and attitude in dealing with two chronic diseases.

From the feedback I believe the talk was a success and hope the doctors present heard something new, seeing things from a patient's viewpoint for there are not many people in the world with Gaucher who also suffer from Parkinson's.