Musings

     He walked up the long driveway along the edge of a forest that runs along a rippling stream.  He wonders what awaits him as he returns home from school.  His heart and stomach feels the dread as his brain tells him of what he may find.  He really has no idea.  It could be a fall, or a mess to clean up that he won't know where to begin with.  And it could always be, well, he didn't want to think about that.  He wonders why he has this burden at such a young age, at a time when his friends were all out enjoying themselves. Why couldn't he?       It all was just so unfair and it didn't have to be this way.  His sisters could have taken up a bit of slack but that was not going to happen.  He knew it and his father knew it.  He was tired, almost as tired as his father who was gone 14 hours per day to work.  His mother wouldn't accept outside help and didn't want anyone in the house.  She no...

      I miss her.  Yes, I see her everyday with the exception of a couple of days while I was ill with a virus.  I stayed away to protect her, but I miss her, the essence of her, her presence. I miss what once was but I also miss caring for her. I miss her scent, and even all the troublesome things she would do. The last three months have been horrific and up until a few weeks ago when we began treating her with CBD oil I really felt I was fighting a losing battle, but with those improvements have come decisions as to where do we go from here?      For those of us in the HD community, and those of us as humans in general it is something that we all struggle with when a loved one becomes ill and that illness is terminal.  Most of us though, tend to think of nursing homes as a place that we may end up in when we grow old, especially if we don't have a family that is able to care for us.  For most of us even the thought of dealing wi...

     It was 1977, nearing one of the most fun decades I would ever know. My girlfriend was 17 and she came to my house with the latest edition of Seventeen so that she could look at it page by page and ask if I liked this dress or those shoes. I honestly don't know if other boyfriends did that, or if girlfriends did that with their boyfriends.  You see, as a teenager, she was the only girlfriend I had.      She however, being stunning to the eyes had many boyfriends and I knew about them. I encouraged her to have them because I was young. I was too young and I would be there with her as she got ready to go out with some boy who had a car. I was too young for that as well. I was never jealous. I just needed for her to not miss out on her teenage years, which for many are the best years.      So why would a young attractive girl want to be with a nerdy but nice boy who couldn't take her for a ride in his shiny car?  I know w...

                 I have watched her fade for eighteen years.  Once vibrant, talented, intelligent and glamorous, now only a shell of her former self.  It was like she no longer had HD;  that the demon that was this disease had now left.  It had taken everything from her and now tossed her aside to die.  It had used her up and taken most of what the essence of her used to be.  A part of her had hidden away from the demon far inside herself;  the part that loved and felt passion, and I could see it in her eyes that still had that famous twinkle.  Her eyes were her best feature, no one could deny it, although I have to admit it was the second thing I noticed about her.  The first was her exquisite behind.  It was something I often joked with her about and she knew it was no joke but she found it charming regardless.      I often sit with her now in the hospital just the two ...

           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 ...

     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 ...

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...