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Astounding Lewy

This past Saturday, I gave Lewy Body Disease (LBD) and especially dementia with Lewy bodies (DLB) a new alias. For the new alias I chose ASTOUNDING because of the events that took place in my body.  Previously I have referred to DLB as a disease of many faces, peaks and valleys and the highest and lowest roller coaster anyone can ride.  While I continue to do well on my neuropsychological testing, my physical symptoms continue to erode.

Friday night yielded very little sleep.  I sleep in a recliner in the den because of my elevated blood pressure (supine hypertension) when I lie down.  On this night, I woke up about every hour.  My wife was sleeping in a bedroom close by but I would not wake her up.  She needs her rest because she has Lupus and Rheumatoid Arthritis.  During the night my gait was mildly altered as I would walk to the bathroom.  Through all of this time my cognition was good. I had no feeling of being in a fog.  Really, the gait and balance issues were no worse than they usually are during the night when I go to the bathroom multiple times.  Exhausted but not able to sleep, I decided to get dressed.

About 2 hours later, Judy and I went to the grocery store.  Enter Lewy!!!  ((graphic for physical characteristics available here >>  https://truthfulkindness.files.wordpress.com/2016/01/8f96f-parkinsons.png ))

As I walked into the grocery store, I immediately grabbed the first buggy that I could find.  As I held onto the buggy and followed Judy, I began taking baby steps without being able to lift my feet off the ground.  It was as if my feet were glued to the floor.  My mind was clear throughout the entire time.  As I continued to shuffle and struggle to keep up with her, I thought of a possible explanation as to what was taking place.  It was as if the neuron(s) that were responsible for me walking were not functioning.  No matter how hard I tried to pick up my feet, I was not able to do it.

The question entered my mind, “How can this be?”  “How can the pendulum swing so far?”  “How can my mind be clear and I can barely walk?”  Every person with DLB has a different journey.  When one of my symptoms of DLB increase, usually many of my symptoms increase.  This experience was totally different.

Ten hours later, I got up out of my recliner and started walking to the back of the house where Judy was quilting.  As I started walking, I immediately noticed that I was once again swinging my arms, picking up my feet and having a near normal gait.  Still the unanswered question is,  “How can this be?”  “How can my mind be clear, but my ability to walk change so quickly?”

 Be LBD Strong!

©2015 Robert Bowles

  .COMMENTS:

Debbie Kobit on 04/27/2015 8:59am
It is like this for my dad. One or more things always seem to be working against him. How can he not be able to move his feet and lean so far over? How can he sleep for 15 or more hours? How is it that one day he is up dressed, ready for breakfast and out for a walk by himself with his walking stick and the next day or even the same day he doesn’t seem to know what a fork is?? God Bless all who continue to fight against this battle and share the journey.

Robert C Bowles Jr on 04/27/2015 3:44pm
My faith sustains me through it all. I will be praying for you, your Dad and your family

Joy. Baket on 04/27/2015 9:06am
Very well written. My husband died on April 8th. I always wished I knew how he felt as he rarely mentioned anything about it. He was diagnosed with LBD almost 5 years before he died. I don’t think he could have ever written down what you have written. I am so grateful you are able to discuss this with everyone. What a wonder person you must be. God bless you.

Robert C Bowles Jr on 04/27/2015 3:46pm
Thank you for your kind remarks. My thoughts and prayers are with you and your family.

Joy Baker on 04/27/2015 8:51pm
My last name is actually Baker not Baket like I entered earlier. I also meant you are a wonderful person not a wonder person. As you can see, this disease has had an affect on me too. Love and best wishes. Joy Baker

Joy M. Baker on 04/27/2015 8:56pm
I want to make just one more comment. My faith sustained me too. It always does. I always feel thy will be done. Blessings to you and your family. Joy

Robert C Bowles Jr on 04/28/2015 10:25am
Joy, you are absolutely right. Dementia and dementia care has an impact on so many people. With Mom and Dad both having dementia and now me, I understand the dynamics of both. I have a deep abiding passion for helping care partners have a better understanding of what their love one might be experiencing. God is given me the gift of being able to articulate what takes place. As long as I have my mind and strength, I will focus on helping both the person with dementia and their care partners. Thank you for being a part of my life. I will be praying for you and your family. May God richly bless you. Phillipians 4:19

Truthful Kindness on 06/03/2015 7:49pm
Robert, Thank you for sharing your life. This entry was chosen to be included in our May Newsletter “Symptom Perspectives” at https://paper.li/f-1408973778 . — Tru

Robert Bowles on 06/26/2015 8:40am
Thanks Tru. You are doing an awesome job with all of your advocacy. I am so fortunate to have you as a friend.