It was a strange feeling going to the JHD weekend this year. My son Michael and his friend Bobby had both passed away and it was a different venue; how could it be as good? Jamie (who had been one of Michael's carers), my daughter Kirsty and I, left Girvan at 1:30 pm for the the 150 mile journey. We had hoped to be at the Calvert Trust in England by 4:00 pm. We had the satellite navigation system so getting there should not have been a problem. Unfortunately, 'shouldn't' and 'wouldn't'
%TR% My Story with Huntington's disease began in 1979, when I met Rikki's father. I was 18. We didn't stay together very long because of his behaviours, which I learned later were often typical of HD. For years I just thought he wasn't a very nice person. During the time we were together he once told me his father had died of Huntington's disease, but he didn't explain much and I had no idea of it, so I didn't ask further & just accepted it. Never once did I consider HD or its consequences.
Dresden,Germany. September 2007. I was looking forward to the meeting in Germany this year as I had never been to Germany before. It was more exciting for me as JHD had a much bigger part in this years agenda. It was also the chance to meet up with old friends and make some new ones. The Friday and Saturday were the meetings of the European Huntington's Disease Network. On the Friday we had presentations on "Weight loss in HD", "RNA therapeutics-a cure for HD or a dream without a future?"
One of lives enormous tragedies is having a child diagnosed with JHD -- no cure,no hope,no chance. I consider that wrong. What the diagnosis produces is the ability to realise what life is all about, what we should be doing instead of mourning the inevitable is living it. I found it really tough for the 1st year. I cried over and over again; what could be worse than this? No warning is worse, no idea that your child could ba taken away through some kind of disaster. We never know what tomor
The topics that are covered in this article are only my experience and in no way a guide or a criticism of how others think. When caring for someone with JHD we encounter many problems; one of the biggest is trying to be understood. We try our hardest to explain our situations to doctors, nurses, social workers etc.... but often we are thought to be exaggerating or even bending the truth a bit. Sometimes its like banging our heads off a brick wall. Not only do we have to care for our loved on
It was early August 2000, a lovely Summers day in Scotland (rare). Michael and I were going to Yorkhill hospital. He had been having problems -- falling, deteriorating motor skills, bad muscle tone; something wasn't quite right, I didn't know what. We were to meet a neurologist, an expert of 'the brain.' I knew very little about all of this. I suppose I was a bit 'ignorant'. Little did I know that two hours later our lives would change forever. As we walked into the neuro's office, he watched
This is not so much as a difficult subject for me any more, as it is for someone who is going through this with their child as you are. First, you DO HAVE the most important thing to give.....LOVE. This does not come freely and not all people have it to give!!! My heart and soul died several times every day in the last few years of Kelly's care and especially the last 6 months of her life since she went downhill so very quickly. To have to tell your child that it is okay to let go, i