My father passed away on the 1 of January 2010 at the age of 58. He was an extremely successful Oil and Gas Projects Lawyer, and above all a great and humble human being.

 The loss of a loved one is never easy. But having someone suffer through Creutzfeldt-Jacob disease makes it all the harder. I remember seeing my father well and full of life in June only to see a man who had lost half his body weight and on a wheel chair without being able to speak two and a half months later. It is a memory that I will have to live with for the rest of my life and one in all honesty I have yet to come to terms with. CJD robs the sufferer of dignity and lays bare the harshness of life to those around him. The symptoms (at least in the case of my father) are many; first the memory begins to fade, followed by paranoia, listlessness, hallucinations, lack of focus and hand-eye co-ordination. This is just the beginning.

The symptoms creep up at first but then speed up until in an instant everything fades and your loved one fails to recognise who you are and loses the ability to talk. That is followed by being absolutely bed ridden, unable to communicate and seemingly in a lot of pain. Seizure after seizure racks the body, sending it into uncontrollable spasms. Food can not be ingested so a tube has to be inserted. The only emotion discernable is fear. While all other reactions seem to stop, the hallucinations seem to elicit a look of horror and fear every once in a while.  Then with being bed – ridden, comes the inevitable weight loss and infections. Bed sores are a constant threat and every cold inches your loved one further and further away from you.  And the worst part is all you can do is watch them waste away, emaciated, uncomfortable, hurting and scared.

There is no easy way out and definitely no cure. So if someone you know is suffering from this horrific disease then I have no consolation for you, just my heartfelt empathy. All we could do on those cold and rainy nights near St. Johns Wood was sit by our father’s side and pray. Read him stories and make him listen to music. Hoping that somewhere behind the disease he was still listening and finding comfort in the worst days of his life. It was important to spend every moment possible with him, for while the pain of watching him suffer was tremendous, it paled in comparison with the guilt of not having been there for him. If there was ever to be a poster boy for ‘lifes a bitch’, CJD would be it. But life moves on. Emptier, colder and harsher but take comfort in the fact you got to know your loved ones for as long  as you did. Because that is the only consolation to take away from the ordeal.

 There are so many different opinions about CJD and where it comes from, especially from the loved ones that have lost a family member to CJD. There are unanswered questions and horrible memories of the monster who took my father away. One hope is that their will be more research so we can truly know and understand what CJD is. Maybe one day we will truly know, but right now all we can do is spread awareness.

 As a family we were not prepared for the emotional trauma and upheaval that this disease was going to bring into our and our father's life .My mother crying every night and in constant distress was painful in it's own right. We however were lucky that we had the resources to cover my father's medical cost while he was in hospital before being transferred to St. Johns hospice. There are families on the other hand who will not be so lucky if you can call it that and will struggle to cope.

In roughly three months time it will be two years since my father passed away and I would like to raise as money by the beginning of January for The CJD Support Network in his memory and to provide a little help to someone else suffering from this horrific disease. The CJD Support Network provides both practical and emotional support to individuals effected by CJD and their families. It also supports families in financial need through caring grants.

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