QUALITY OF LIFE

Over the past months, I’ve written about the loss of bodily functions caused by neurodegenerative diseases such as Parkinson’s.  Yesterday, I wrote about the stigma of suicide or a more dignified end to a life ravished by neurodegenerative diseases.  So, how does a person decide when to call it quits?

From my point of view, it all boils down to how you describe “quality of life.”   As everybody assesses quality differently, the answer to “when to call it quits” is different for everyone.  Quality of life should be high on the list of items discussed with your family and your physician.  As it stands right now, my “quality of life” ranges in the “it sucks” range.  It’s about to get better.  The movement disorder doc I see referred me to a specialist in adaptive devices. 

In a 2 ¾ hour session, she assessed my need to be mobile and measured me for a customized motorized chair.  I’m currently using a loaner and the quality of my life has already improved.  It has made functioning in the house a less exhausting and less painful experience.  I’ve sold my BMW and I’m outfitting a van so that I can take my chair with me.  It will be great to get out of the house.

The word, disease, breaks down to “dis” and “ease”.  In other words, it stands for lack of ease.  Anything you can do to make life easier is worth it.  If you have a progressive neurologic disorder, talk to your doc about ways to make your life better.  If you’re at the end of your rope, discuss that with your doc and family as well.

End of life conversations were among the hardest things I had to do as a doctor.  Patients were always surprised when I found them a longer rope.  When no additional rope was available, prepping the family and my patient often made a big difference.  Most people think Hospice is for cancer patients.  Hospice is for all end-of-life situations and can be a great asset in helping people die with dignity.

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