Robert Bowles gave the following speech at the inaugural Let-It-For-Lewy 5K race on October 11, 2014.
My name is Robert Bowles, and I am a retired pharmacist. I was diagnosed with LBD at age 64 — that was about 2 1/2 years ago. As many of you know, Parkinson’s symptoms are a component of LBD. Sometimes, I will talk low and soft and do not realize that I am doing it. If this occurs, please raise your hand and I will talk louder.
First, I want to thank the Lewy Body Dementia Association for inviting me to share with you today at this important event as we celebrate the kick-off of the inaugural Leg-It-For-Lewy 5K during LBD Awareness month. I want to express to LBDA a lot of gratitude for the great job they do in providing the best website for education, information and resources about LBD and advocacy. They invest money from these events to provide powerful information for physicians, allied health professionals, persons with LBD, caregivers and other interested parties. So Davida, on behalf of this group today, I say a very heartfelt THANK YOU AND THE ENTIRE STAFF AT LBDA.
All of you who follow college football know that Georgia is playing this afternoon. I came prepared to support my alma mater by wearing my red and black tennis shoes. Just as an act of encouragement to me before continuing my comments — would you repeat after me: GO DAWGS!
Many of my comments today are especially directed toward persons who receive and early diagnosis of LBD. By the time some are diagnosed, most likely it would be difficult for them to do some of the things that I have been able to.
My dad was diagnosed with vascular dementia; and my mom was diagnosed with Alzheimer’s. My path to diagnosis lasted approximately 15 months, and I saw 8 doctors. I was first diagnosed with depression in March 2011. Orthostatic hypotension (BP drops when stand up) in October 2011. April 2012, I was diagnosed with Parkinson’s on my first visit to a neurologist. May 2012, he informed me that I did not have Parkinson’s but most likely had frontal temporal dementia. He referred me to Emory in Atlanta to the cognitive and memory clinic. By the time of visiting this neurologist, I had or was experiencing every diagnostic symptom listed on the LBDA website and was given my diagnosis on at this visit after over 3 hours of physical exam and neuropsychological testing. Additional lab work followed to rule out other possible causes of my symptoms. At the time of my diagnosis, I was sleeping 14 to 20 hours per day.
LBD is the most misdiagnosed and under-diagnosed of all dementia; and, there are actually over 100 types of dementia. Potential medication sensitivities can be a huge part of LBD. Looking back, I first experienced medication sensitivities strong analgesics in 2005. Three months after my physician addressed medication issues in my drug regimen, I began slightly improving in September 2012. For the past 2 years, I have not passed out or fallen. My tremor and my gait are better; and, the only hallucinations that I have encountered were with strong analgesics and some other medications used during my 3 major surgeries this year. This issues resolved for me fairly quickly. LBD has so many potential symptoms. While these that I mentioned are not active at the present, many other symptoms are.
I am friends with someone whose son was diagnosed with LBD at 17. He is now 22 or 23 years old. The oldest person I know diagnosed with LBD was in their 80’s at the time of diagnosis. Most of the ones in support groups that I am in were between 50 and 65 at the time of diagnosis.
I want to share with you why I feel I have been able to live with LBD well for the past 2 1/2 years.
- I have the most incredible support that is with me every step of the way. I have my church family and I have friends that are always there with me. In fact, one friend came to my house every morning for almost 3 months and put waist high pantyhose on me to keep me from passing out with my BP dropping. Neither my wife nor I had the strength to do this.
- While I hate this disease, I am thankful for every opportunity that it has afforded me to advocate and educate about dementia and share my experience, strength and hope. I thank God for this every day.
- I have chosen to be involved in a program called Dementia Mentors. There website is dementiamentors.com; and, I am some flyers available today. This site was designed by persons with dementia. It is easily navigated. The site provides resources, brain games, and approximately 3 minutes videos done by persons with dementia sharing the experiences in their life with various situations. These videos are good for both caregivers and persons with dementia.
- Every Wednesday and Friday, I attend a Dementia Mentors Virtual Memory Café. Here persons with dementia come together virtually. They are able to see each other on the computer monitor. This affords us a safe opportunity to cry together, laugh together, and have fun together. All you have to do is ask to be part of this.
- I have chosen to be involved in a secret Facebook group called Forget Me Not. All you have to do is ask to join.
- I administer a closed Facebook group called Forget Me Not – Lewy Body Dementia. Even though we do not sugar coat LBD, we do focus on love, care and compassion in the sharing by others of their experience. Each day, I attempt to share some of my experiences and how I have adjusted to the challenge.
- I now have friends all across the world with dementia. Often, I get to visit with them at the Memory Café.
Yes, life with LBD is very challenging early in the disease because of the wide fluctuations that occur from hour to hour, day to day, week to week, month to month.
Think back where you would be today if you had not had a purpose in life. The same is true after a diagnosis of LBD. Finding your purpose in life is important. As I mentioned for me, it was advocate, educate and sharing my experience strength and hope. Yours might be different.
My challenge to you today is to live life to the fullest. There is life after a diagnosis of LBD. Personally, I refuse to let LBD rule me — I WILL rule LBD. Whether with LBD or not, everyone will die one day. DO NOT JUMP TO THE FINAL CHAPTER. Enjoy the good times and thrive on them.
I dream for a cure of dementia. I dream of persons with dementia being better educated about their disease. I dream of better education for caregivers. I dream for better education and understanding about dementia for friends. I dream there will no longer be a stigma attached to dementia. I dream of dementia friendly communities all across the United States much like what is already being doing in the UK. My friend, Harry Urban, shared with me his dream of having memory cafes open 24 hours a day and 7 days a week so everyone would always have someone to talk to. I have adopted that as one of my dreams.
My family and I are totally transparent about our journey with LBD; so we are making ourselves available to you for any questions you might have of us during the balance of this event. We would be delighted to chat with you.
Thanks to each of you for participating in this inaugural Leg-It-For-Lewy 5K. Enjoy the day and have lots of fun. Thanks for allowing me to be a part of today.
One last thing, I leave you with a quote by the famous New York Yankee Yogi Berra — “It ain’t over till it’s over”. Stay LBD STRONG.