Global MND / ALS Day: 21 June 2014

Today is the middle of winter in the Southern Hemisphere – the middle of summer in the north!

All over the world, however, it is an awareness day for Motor Neurone Disease ( MND – also known as ALS, and in the USA as Lou Gehrigs Disease and in RSA as Joost’s Disease).

My illness, CBD ( corticalbasal degeneration), is not MND. However, it is also a degenerative brain disease with many similar symptoms. What our neurological diseases have in common is that no-one knows the cause of the diseases, there is NO healing treatment, nothing to slow it down or reverse it and NO cure.

Besides theses commonalities, we also share the ongoing problem of financing our ever-increasing medical costs. In South Africa, neurological illnesses ( other than Parkinson’s Disease and MS) are not recognized in law as a PMB – prescribed minimum benefit illness – and are, therefore not funded by medical aids!

Please remember all of us today, and our families and our carers.

So, whilst asking for you to stop and become aware of our affliction today, also be aware of the fragmentation of various groups that have been established to assist with awareness and fundraising. In our city alone, I am aware of some five different organizations (maybe more) all competing for your attention and, more importantly, for your funds!

Ensure that your funds are being utilized in the area that you wish. Ask questions and demand answers!

Thank you for caring for us today and every day, and for assisting to fund our unasked for challenging ride through what is left of our cut-short lives.

God bless us all!