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Showing posts from January, 2017

Quality of Life...A Huntington's Disease Story

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           In general,  quality of life  ( QoL  or  QOL ) is the perceived  quality  of an individuals daily life, that is, an assessment of their  well-being  or lack thereof. This includes all  emotional ,  social , and physical aspects of the individuals life. In  health care ,  health-related quality of life  (HRQoL) is an assessment of how the individuals well-being may be affected over time by a  disease ,  disability , or  disorder .      The reason that I am writing about this is due to the fact that my wife is now approaching end of life.  It is something she is well aware of and is a subject she expresses apprehension, anxiety and dread of.      Huntington's Disease is something she is not a stranger to.  She watched her mother waste away from this dreaded disease as well as her aunt and uncle and it has also been a part ...

Sweet Honesty: A Huntington's Disease Story

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     It's an anxiety filled night.  As my wife lingers on in hospital after being told twice it was only a matter of hours until she would pass, I sit and wait for an unknown time when she will be gone. She can still communicate with me and we reminisce of good times and even bad times. It's funny how dark times can be something to look back at fondly, highlighting the strength of character we needed to get through it. I wondered if I ever gave credit to this woman that stayed by my side no matter what.  She would surprise me at times with solutions to problems that I couldn't see.  I made sure as each event came up that I gave her the recognition she deserved. She was a true, perfect partner, the only really great decision I had made in my life.      We laughed today of how I proposed.  I actually never did.  I had made up my mind long before that she was the one and then one day I asked her to meet me.  She was ...

When the light goes on and off. A Huntington's Disease story

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The holidays are over, with the exception of the odd Facebook post of people posting some pics that they now have time for, now that all the hub bub has died down and normality starts to creep in. I'm not one of those people. I don't celebrate the holidays, for religious reasons, although that is not what I'm writing about. I've watched from afar so to speak as people celebrated, feasted, drank to excess, professed love for one another, wished each other well for Christmas Day and expressed hopes for prosperity in the New Year. I say I watched from afar but social media brings it right into your home. Try as I might to scroll on by each colorful post along with Messenger delivering messages of peace on Earth and so on, it's almost impossible to avoid unless you simply shut down your computer. So the merry making continued. I just sat here for days waiting for the worst to happen. It was going to be a wonderful time for me due to having a couple of weeks of...