One thing I knew for sure this new year will be filled with gigantic changes. Merv will go into permanent care. I'll begin looking for a job as I'm too young to retire at 60. Just lots of changes which I anticipated before that clock struck midnight.
Then there are people with plans of inspiration and joy awaiting them before their worlds are turned upside down in despair.
A family I know who lost their father in the last few years suddenly lost their son only a few days ago. He had a heart attack. He was just a young man, not old at all. Whatever their family expectations of the coming year; they are now dashed, splintered and unrepairable. Such grief for a family still grieving. It is unexplainable. Though I don't know them well, I felt the rawness of their pain and grief.
"So unfair", I shouted out loud to myself.
Huntington's Disease is unfair but we do have time to accept and to fight. We can put plans into action, we can start the 'Bucket List' earlier is desired. We prepare ourselves, we prepare others and we wait for symptoms, we wait and hope there is more waiting time available before the dreaded symptoms appear. Recently there is news of a lumbar injection trial which is showing positive results in reducing HD symptoms. The trial is still in it's infancy but everyone with a link to HD is excited and awaits further research results with much hope.
Merv's father wasn't so lucky. He went into hospital at the age of 65 thinking he had suffered a stroke. "Huntington's Disease," we all said. "No, never heard of that!" we chorused. We choked when we learnt it is inherited from the affected parent. Each child has 50% chance. From Merv's father, Merv received the gene and thus it continues to the next generation.
A family, any family can be devastated by illness or loss. It takes the strength of all to continue on to offer hope and support to each other.
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| New Year's Eve celebrations |
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