Last Post

As Parkinson's disease progresses, my body feels tired, but I'm grateful to have clarity of mind. I have dedicated the last five years to blogging, writing endless articles, and expending great efforts with the sole purpose of helping create greater awareness and connect with others in similar situations. I never dreamt that my blog would be followed in over 70 countries around the world. However, after much thought, I have come to the decision to bring my tireless campaigning to an end for I feel that the time is right for me to prioritize how I use my energy.

Don't think for one moment I'm giving up or giving in, but hope you understand that I want to spend more quality time with my family and friends. With my “on” episodes being so erratic, I wish to spend more time in the warmth of their loving embrace when I can enjoy them. My typing has become extremely slow and it is difficult to do what I once did and so the need to conserve my energies to spend time with family and friends, enjoy being in the garden, and going on short outings has become my first priority. Being realistic, the sands of time continue to flow through the glass and no amount of wishing can magically make the grains slow down or stop.

It is therefore with a heavy heart, that today’s entry in this blog will be my last. Over the past few years I have taken you with on my journey, sharing with you along the way useful information, my thoughts and emotions, which hopefully have given you food for thought.

I would like to thank all who have been following me, for you have given me in return support and encouragement to carry on writing. I wish you the very best, success in all your endeavours, but most of all, good health.

This site will remain on-line should anyone wish to read back through the archive, or purchase any of my books.

I wish you good health and for now bid you a fond farewell.

Gaucher International Family

The world is becoming a small place, thanks to modern technology, and in particular the internet. The isolation felt by patients and their families living with rare disease, will hopefully become a thing of the past. I wrote a short series of poems about growing up with Gaucher disease, entitled “Let’s Shoot The Breeze AboutGaucher Disease” – corny title, I know, but it’s had the desired effect. Although possibly too small a collection of poems to legitimately call a book, I never the less had it uploaded on Amazon for I had other intentions in mind. I did not expect any sales, but rather had the idea, if anyone was searching to connect with another Gaucher patient, a quick search on Amazon would reveal my little book and provide a way of getting in touch.

Imagine my delight when a fellow Gaucher patient got in touch, all because of my little book. Thrilled that my idea had worked - don’t you love it when a plan comes together?!!! A young lady who has her own website called “Gaucher Stories” contacted me. The site is a platform, almost like a meeting place bringing the international Gaucher family together where one can share stories and experiences. Living with a rare disease such as Gaucher, being in contact with others who have similar stories to tell is of tremendous value and support.