Friday, June 24, 2016

Unable to control thoughts

I am loosing control of my thought process.  I obsess on negative thoughts that probably are not true, but may be.  This is a new issue, so my mind vacillates between the thought being true and the thought being false.  I am unable to change the thought process and defer to something less stressful that I like and have no personal capital in.  I am reticent to give you the topic of my consternation, but it is personally upsetting.   I realize I am progressing into unknown mental territory.  But, I am also unequipped to deal with this alone.   I have done some Internet searching with little help.

I the past, before LBD, I could change my thoughts to different topics and relieve the frustration.  Or, I could use facts to defeat the negative thoughts.  Neither of these processes seem to work now.  It is curious how my mind confuses itself and me.  It is frustrating to loose the life coping tools that served me so well all my life.

I have done some more research and I will not tell anyone what my issue is because they will use it against me.  It seems this is a larger issue with LBD patients and therefore, I will try harder to deal wit it only own.  I need to be strong and stay in control of my thought process.


  1. So very sorry you are experiencing this. Praying for you , Silver Fox. May the Lord give you peace and comfort minute by minute. He is holding you, even when your thoughts are most distressing. .

  2. I read your blog and I find that we have so much in common. I am an elected official in Massachusetts and went public with my diagnosis of Lewy Body and Parkinson's. Keep on fighting my friend

  3. I just want to start by saying your SilverFox reporting on LBD is up there with CNN's Silver Fox reporter, Anderson Cooper. Smile. You are thoughtful, detail-driven and clear, concise and caring in your depiction of this horrible disease. My Mother was diagnosed two years ago and after top-tier hospitals and world-renown doctors, your Blog is the best portal into the mind of Lewy Body Dementia. I have learned far more from you then anyone from Johns Hopkins or Harvard. Because my Mom can no longer "communicate" effectively, I am left wondering why she no longer enjoys the TV, movies, the car, the mall, loud places, favorite restaurants etc. That is, until I stumbled upon your Blog. Now I can "somewhat" know what my Mom is feeling, like the movie Being John Malkovich. I try to see the world through her brain, her eyes, her thought-processes.

    What is your medication history? For example you wrote about decreasing Nortriptyline but I'm curious as to what other current medications you are on and what medications have you been on the past and what side effects you experienced or reason for stopping each.

    That would be a very helpful Blog post for me ..... and others dealing with a Lewy Body person who can no longer accurately articulate side effects with any drug they are given or how they feel, how their body reacts. We are all lost and confused with this disease, moving forward blindly each day, feeling our way.

    Thanks so much for taking us with you on the LBD road ..... your words give testament to your life.

  4. i have read all of his blogs and have learned so much. I am 64 and had no idea what this disease was all about. I was experiencing things that deeply troubled me. His journey with this awful disease has opened my eyes and given me an insight of what is happening to me. He is a hero .