Whether this is your first time to my blog or if you are a regular reader, thank you for visiting and welcome to my world! Pull up and chair and make yourself comfortable. No doubt you are either a fellow sufferer, a caregiver or perhaps you are simply interested to learn the realities about living with Gaucher and Parkinson’s disease. I have been writing for some years now, and as time has passed, I’m in a very different situation today than when I began writing this blog in 2011.
As Parkinson’s slowly strips me of abilities that were once second nature, like a macabre strange rendition of “the dance of the seven veils”, as each one drops, a little more self-esteem vanishes into thin air. Many fellow sufferers, with more time on their hands, take delight in resuming old activities or finding new hobbies such as painting, writing or dancing which may not have presented themselves had Parkinson’s not been the cause of life changing circumstances. I think it’s fair to say that despite enjoying new hobbies and coming into contact with some pretty amazing people, which is one of the few positive things that occur as a result of living with chronic health issues, I can assure you, overall the disease takes far more than it gives.
There’s sadly not one aspect of my life that is not affected in some way and consequently, the lives of my husband and daughter are equally marked. Despite everything, we still retain a sense of humour which helps pull us through each day – for this is one thing Parkinson’s cannot steal! When you have a strong fighting spirit and a supportive network made up of caring family and friends – it really makes a huge difference.
This week I gave a talk to a group of thirty medical students about living with Gaucher and Parkinson’s disease. I hope apart from hearing a patient’s perspective about living with these two diseases, that they took with them my message of hope, and saw first-hand how one’s attitude can make all the difference in coping with chronic ill health. A positive outlook, sense of humour and good support system are essentials that I heavily rely on.