Thursday, December 3, 2015

What I learned from Robin Williams

I wrote before that I read the article in People about Robin Williams' death as described by his wife.  She said he was having great difficulty  dealing with his perspective that he was loosing his mind!

I can identify with Mr. Williams on that point.  So many things have happened to me since I was first diagnosed with Lewy Body Dementia.   For instance, the incident when I was dreaming I was in a fight and I hit the fellow I needed too.  It turned out I hit my Wife, and drove her across the bed!!  Thankfully, she had her back turned to me, so I hit the back of her head!  It could have been much work.  That was caused by REM Sleep disorder caused by the Lewy Bodies messing with that portion of my brain that paralyzed me when I sleep.

Hallucinations are another symptom that are difficult to deal with.   I tell people I use my miniature poodles as my Hallucination Checkers.  If they do not bark, I do not worry.  But, truly, each hallucination bothers me because it reinforces my belief that I am loosing control or my mental functions.

Nothing in my life is as it was before LBD!  For instance, I do not drive any more.  We finally gave in and applied for a Handicapped Parking Permit.  I have difficulty finding words and conveying my thoughts.  I have stability issues.  The fun things of life are gone because either I cannot do them, or I do not want to do them.

I used to be a self assured professional who had the answer to most things.  I was in charge during very dangerous times with live ordnance on Navy Ships.  Now, the most dangerous thing I do is pass gas!!  Trust me, that is a brave thing to do for me.

Another issues in the thoughts that permeate my mind.  My thoughts move from Navy, to survivalist, to Assisted Living.  I can never keep a single thought in my mind, especially in the evening.  I truly do not have control of my thought process.

I have written before about the anxiety, anger, depression issues.  They also illustrate how LBD has taken over my mind and my life.

Mr. Williams decided to end his life because he could not deal with the loos of mental control.  I do not believe I will take that course.  Instead, I want to see this disease to the end, just because I am still interested in how this turns out.

Just the same, the loss of everything in my life that represented what and who I was has shook me to my core.  So, it appears Robin Williams and I were impacted by the same issues.   We just decided to take different paths to deal with them.  Sad but interesting.


  1. I stumbled across your blog while doing some research on LBD and PD. I watched my mother suffer through this for about 10 years before she lost her battle at the age of 67. I can see a lot of her struggles in your writings. I really appreciate seeing things as she did through you. Thank you for allowing readers on your journey. I will pray for peace for you and your family.

  2. Your story on this blog helps me see more how my dad felt after his career as a military and then civilian aeronautical engineer was cut short with young-onset PD. He loved his job and missed it greatly. Your writing is clear and so honest. I now care for my mum who has Alzheimers - the symptoms are different but she shares some of your frustrations. By seeing things from the perspective of reading your story I'll be more understanding. My father in-law was in the Royal Navy on destroyers overlapping your time in the Navy, working as a scribe and also operating the guns - he shares your enthusiasm with that life and has no end of stories. Thank you for sharing.