Living with Lewy body dementia is much like riding a roller coaster. Waking up in the morning, you never know what surprise might occur. Some days are like having six different brains in one day. Emotions run wild.
You might be happy or you might be sad, You might be laughing or you might be crying. You might be smiling or you might be frowning, You might be walking straight or you might be bouncing into walls. You might be wanting to walk forward, but find yourself walking backwards. You might be wanting to walk forward, but find yourself walking sideways. You might be fully alert and suddenly realize your dosing off.
You might be hallucinating and wonder if it the hallucination will ever end. You might be having a nightmare and wonder if you will survive it. You might be acting out a dream with emotions building high, wondering if it will ever stop. All of a sudden you come out of it only to realize that your nose is broken and your cheek and forehead needs stitching.
The possibility of experiencing all of these symptoms during our journey with LBD is real. It often brings on anxiety, agitation and depression. We have two choices, live life to the fullest possible extent or give up. Most of my first year was spent with no path forward. Physicians never gave me any insight to living my life to the fullest with the condition that I was diagnosed with.
Now that my train has jumped the track, how can I find a path forward. One year after my diagnosis, I decided that I wanted to LIVE and NOT give up. Reflecting on my life, I realized that I could take that GIANT step forward to propel myself into dementia advocacy.
Utilizing the foundation of my pharmacy practice, love, care, education, encouragement and hope, I found that I could use those same tenets to help families affected by dementia. This understanding and transformational experience gave me LIFE and HOPE.
For me, it's about taking the moments or days and enjoying them. It's about letting go and not letting my disease define who I am. It's about me getting outside of the disease and thinking about others and not myself. It's not easy, but it's worth the effort.
In my own life, I found this to enable me to recover more quickly from those nightmares, hallucinations and physically acting out dreams. There are mornings that I wake up from hallucinating, having a nightmare and physically acting out what is taking place. At times like this, I say, to Lewy,, "you must go on vacation. There is no room in the Inn."
Engaging my brain to play games with Lowy keeps me fighting. Those positive times of feeling those high's reminds me that I am fighting this disease with every ounce of energy that I have. I am refusing to let Lewy define who I am.
Saturday before Mother's Day, my two daughters and their family along with me and Judy went target practicing. It had been over 25+ years since I had fired a gun. My daughter drew me a "Lewy" target. When I finished firing, I found that I had taken left the left frontal area of the brain out, and the left and right carotid arteries. Lewy had bled to death. A surge of adrenalin engulfed me. I felt like I had defeated Lewy. My family was enjoying every minute of it.
Hopefully you felt humor as you read about Lewy's death.
One of my quotes is "Fight like a Tiger and be LBD strong. Stay strong and don't and let Lewy define who you are. Love you all!
I do not know what the future holds, but I do know who holds the future.
©Robert Bowles - May 30, 2017
Robert Bowles, Jr.