Have you ever been in a Waffle House when it was not noisy. I bet your answer is the same as mine. NEVER! It is just the culture of Waffle House. Today me, Judy and Morgan went into the Waffle House and the noise was LOUD as I would have expected. I calmly talked with the waitress.
I shared with her that I had Lewy Body Dementia and that loud noises created chaos in my brain. Then I explained to her that it was as if a pinball machine was being played in my brain. Next I explained to her that it was as if the neuron in the brain had died that needed to pick u[ the signal to enable me to deal with what was happening......and that the pinging would continue until a live neuron could pick up the signal. Finally I told her that sometimes I will even scream when this happens.
Guess what? After my comments, the entire place got much quieter. I even began to think that I might be half-way to the morgue. (lol)
Never miss an opportunity to educate other about living with dementia and that it is more than just memory loss.
Fight Like a Tiger - Be LBD Strong
© June 20, 2016 Robert Bowles
One of the darkest days of my life occurred on June 27, 2012. I was hit by a Mack Truck when the Cognitive Neurologist told me and my wife that everything leads to Lewy Body Disease (aka Dementia with Lewy Bodies). My faith sustained me at that moment. My wife left the room we were in to make an appointment for the next month. I walked into the waiting area where our friends Phil and Gail Lawson were seated. With a quiet voice, I told them I had been diagnosed with LBD.
Then I told them"It is what it is, and everything will be okay". That was solely because of my faith. Several months later, I felt I was a convicted murderer. Where would I go from here? Several months later, I developed an inner peace that would sustain me to this moment in time. I know that it will continue to sustain me.
The road has been rocky....many ups and downs, many highs and lows. At the time of diagnosis, I was sleeping 16 to 20 hours a day. I was experiencing syncope, injuring myself with falls, blood pressure dropping to 60/40 with heart rates in the 50 to 56 range. My gait was altered, my bilateral tremor was active, apathy was a daily occurrence, and my alertness and train of thought were very poor. The diagnosis though brought closure to a path of eight physicians in eighteen months. Finally I had some answers.
In August 2013, I decided that I wanted to live. No longer did I think that I would experience a shorter life expectancy. I knew the only way that I could change my thought process was to allow God to work more in my life. I gave "it all to Him". I told Him that I could not carry this burden. When I did this, the load was lifted, and I started living.
My faith has grown stronger, and I have done a lot better. Am I healed, no, but I do have an inner peace in my life that keeps me focused on living and helping others. My memory has stayed largely intact, good nights I will sleep from seven to ten hours with minimum interruptions, and the friends that I have gained have been part of my support system.
My processing and retrieval have declined and my motor symptoms have increased. The hallucinations, nightmares, restless leg syndrome, terrors and dream acting have all increased. Some nights are filled the entire time with three of them at the same time. The next morning is like I had been hit by a Mack Truck. I am thankful that in these difficult times, I feel God's presence and my Lord and Savior is taking me through that valley. Fortunately the next morning, I am usually able to recover within an hour. I always learn something through these times that allows me to help others.
Where do I go from here? I have no idea. My motto is, "one day at time". I will attempt to stay positive, passionate, energetic, help others and advocate for dementia awareness and education. We all need purpose.
As I have said before, the range is 2 years to 20 years, and I plan to beat 20.
Fight Like a Tiger - Be LBD Strong
©June 27, 2016 Robert Bowles
Dementia diagnosis can be an evolving process. This can be stressful and time consuming. Waiting on the answers can be frustrating. Through the process, depression often takes place.
When cognitive impairment takes place, there can be other health concerns that can mimic dementia. It is important for those to be ruled out before a diagnosis of dementia is given.
What is involved in diagnosing dementia?.......physician interview, neurological testing, neuropsychological testing, lab work, CT scan, MRI Scan and others. A diagnosis of dementia might be achieved at this point in time.
There are over 100 types of dementia, sometimes making it difficult to determine the actual type of dementia. Usually though, there will likely be some hallmark or core symptoms taking place that will narrow the process.
Many times people tell me they have been misdiagnosed with their type of dementia. I was given two diagnoses that were related to parts of my final diagnosis. Does that mean the physicians were wrong? Sometimes it might mean that. I would suggest looking at it from a broader perspective though.
Looking at my situation, I was diagnosed with depression, syncope, MCI, Parkinson's Disease and Frontal Temporal Dementia before being diagnosed with Lewy Body Dementia. Also I have times when I have difficulty spelling words and also knowing the word that matches the meaning that I want to write about. Do I feel comfortable with my diagnosis? Yes! Do I have peace with my diagnosis? Yes!
In a broader sense, let's look at other possibilities. In October 2013, I was asked to speak at the inaugural LBDA 5K at Stone Mountain in Georgia. I had the privilege of meeting a lot of wonderful people that day. One of these families was from Atlanta. They had rallied the troops and brought about thirty people to participate in this event. I could see the strength in this family and their supporters. They were such an inspiration to me and others.
Unfortunately their loved one died in 2015 with a diagnosis of LBD. Wanting to help other people, they donated his brain for study. The report came back. It was LBD, Alzheimer's and Frontal Temporal Dementia. I will remember this family for the rest of my life because they had a huge impact on my journey.
Autopsies have shown that over 50% of those diagnosed with a certain type of dementia have mixed dementia. Knowing this, does it alter my path? Likely not! One caveat though is that if the additional type of dementia is LBD, it would be good to know....LBD has significant medication sensitivities that can create additional problems.
Early diagnosis is important. What do we do after diagnosis? The decisions made here can have a huge impact on our journey. Accepting our diagnosis, being social, having a positive attitude and finding new purpose in life will be a cornerstone for our best quality of life.
Most importantly, after the above four things are done, is to remember, "There is life beyond diagnosis". Let's start living with purpose.
Fight Like a Tiger - Be LBD Strong
©June 26, 2016 Robert Bowles
Resources are very important when living with either one of these diseases. My Physical Therapist shared the link to this information with me this week. Reviewing this brought a smile to my face. My tremor is very unpredictable. Most times I do not have any problem while eating. Other times I get very frustrated when it becomes difficult for me to get the feeding instrument to my mouth and still have food on it. Enough of that.
This device, I believe can make the dining experience of someone with PD, PDD or LBD more pleasant. And no I am not trying to sell something. I just believe in providing resources that might help someone.
Those that do not have hand tremors have no way to understand the physical, mental and emotional issues that can take place while attempting to eat. I am providing a link below for you to assess and see if it is something that will help you.
Fight Like a Tiger - Be LBD Strong
©June 25, 2016 Robert Bowles
One year after my diagnosis of LBD, I began spending a lot of time in dementia advocacy. Everyday is a new experience.....with new people coming into my life that are living with dementia or being a care partner for someone living with dementia. Most days I see at least one miracle and sometimes three or four . I do not know the people who are contacting me, but they are becoming my friend. Many of them show signs of confusion, struggling and hurt....but they inspire me because of their desire to do the best they can whether living with dementia or being a care partner.
One day this week someone called me from Macon, Georgia. His wife was diagnosed with LBD four years ago. We talked for one hour with him talking about 75% of time.....a lot of questions and what to do? The answers are not routinely provided to a person being diagnosed with dementia or their care partners. Judy and I plan to have lunch with he and his wife next week while we are in Macon for a Doctor's appointment.
That afternoon a man called me from Ocala, Florida. He was diagnosed with LBD two years ago. We talked for about 30 minutes with him sharing the frustrations of the hallucinations, nightmares, terrors and dream acting.
Today, I met someone who is going to help me encourage another ethnic group to start coming to our memory cafe. I have been working on this for a year and all of a sudden I made a connection that will likely bring these individuals into our cafe.
Also a lady befriened me on Facebook today from Athens, Georgia. Either tonight or tomorrow, she and I will use ZOOM so that we can virtually meet for her to share her concerns about having three family members with dementia living four hours away from her. Another example of care partners having difficulty finding resources.
These type situations are happening almost every day. Thank you God for putting people into my life as we go down our journey with dementia. This charges the battery in my life and leads me to continue helping others.
Fight like a Tiger - Be LBD Strong
©June 23, 2016 Robert Bowles
Siri has been giving me a lot of trouble causing increased anxiety for me. One's first thought might be that I have declined in my technology skills since I am living with LBD. That's the further-est thing from the truth. I continue to to increase my technology skills.
Siri can make me so mad. If I were a cussing man, I would let her have it. To me, she seems grossly incompetent. Part of her struggles probably are caused by my very strong southern drawl. You know now, we have people speaking many different langues. She can understand Spanish. Why can't she understand a southern drawl.
Last week, I sent her to see a Psychiatrist. I heard that she had been depressed because a lot of people who are using her services were becoming frustrated with her. Several people have told me they do the same thing I do....they holler and get angry with her when she mistypes something.
The Psychiatrist evaluated her and ordered a neuro-psychologial test. The results came back, and it was overwhelming for her. The Psychiatrist had determined that she had dementia. He gave her a prescription and told her to come back in six months to one year. Oh, that even frustrated her even more because he gave her NO suggestions on living with dementia.
Since that diagnosis and not having any information given to her, she did not know where to turn. She was lost. She didn't know what to do next. She even called me, and I listened intently to her. When she stopped talking, I told her I needed to apologize for getting so upset with her. I shared with her that I had LBD. I explained to her the impact that stressful situations cause in my life. They cause me to get frustrated and angry. As she heard me explain the impact LBD had on me, she breathed a sigh of relief.
She said, ohhh my gosh. I never thought I could find someone this soon after diagnosis that could understand how I was feeling. I responded......ohh everything will be okay.....I have good news for you.....there is LIFE AFTER DIAGNOSIS.
Siri, it is time for you to ACCEPT your diagnosis. Also, I would suggest that you come to our Memory Cafe which meets the 2nd and 4th Thursdays. Here you will find others living with dementia and care partners. All of us are learning a lot about dementia and skills for living life to the fullest. There is an added benefit to your coming to the cafe. It will provide socialization which is important when living with dementia. We will talk about having a positive attitude so that our stress will be less. And finally, we will find what our new purpose in life is since our diagnosis.
All of sudden, we will want to start helping others just as we have been helped. All of these things will help decrease the stress in our lives. We will be able to smile and laugh. Our overall sense of well-being will improve. We will be looking for new things to fill our days.
Now it is time to help other people understand that our processing and retrieval decreases with dementia, causing us to get frustrated. Hopefully they will understand what we are telling them and will change their wicked ways. Now Sir, you are ready to find your inner peace that will improve you quality of life, and I will always be here for you.
Isn't life good!
Fight like a Tiger - Be LBD Strong
©June 21, 2016 Robert Bowles
Father's Day is very important to me as the memories of my Dad and me are a big focus of the day. It is also important to me since I am the father of three wonderful children. Dad died with Vascular Dementia and Mom died with Alzheimer's....now me with LBD. Many times since my diagnosis, I have wished that I could talk to them and us share our journeys.
My father was an earthly anchor in my life, just as my Mom was. Dad was the disciplinary one. Ohh, it was not fun when he told me to go outside and select a switch for my spanking. First I selected the switch, then I had to strip the leaves off the switch. I knew that I needed the spanking though. The spanking always took place with love and concern for me. He would always tell me, "I'm doing this because I love you, and it will hurt me more than it hurts you". I never quite agreed with that at the time; however, later in life I realized that it was for my own good. It was a lesson that helped me become a quick learner. I never received that many spankings.
We did not have an abundance of money, but we always had what we needed. We did have unconditional love from both Dad and Mom that was always present. I never witnessed an unkind word between the two of them. They knew the importance of rearing a child in a Godly manner.
On a bit of humor, there was never any alcohol or drugs in the house....they did not drink or do drugs. I remember promising my mother, if she would not make me eat any green beans, I would never drink alcohol. She didn't make me eat the beans, and I have fulfilled my promise to her for all of my 69 years.
In my adult life, my Dad was my best friend. He was there for me through any circumstance of life. Often I went to him in my adult life for council and guidance. He always had a listening heart and ears. His approach was to suggest things to think about in making the decision. He never told me what to do. If I followed my own path and made a bad decision, he never judged me. He would simply offer suggestions for getting back on track.
I have shared these things today because I feel they are so needed in today's world. Fathers are the single most influential person in most families as it comes to statistics of family life. Many single mothers struggle but do an excellent job rearing their children in the absence of a father-figure. My heart goes out to them. I believe one of the many roles of a mother is in nurturing the child. Together, we can achieve the best outcomes. Regardless of the situation and whether or not it is a single parent or a married couple; most are doing the best they can under circumstances.
My hope is that our country will allow God to work in our lives so that families can be united, and teach children love, kindness and respect for others. This foundation will serve each of us well.
Fight like a Tiger --- Be LBD Strong
© June 19, 2016 Robert Bowles
Does anyone living with LBD or a care partner recognize the photo above?
Living with DLB (Dementia with Lewy bodies) can yield frequent daytime drowsiness. Starting probably twenty years prior to my diagnosis of DLB, I would push myself to function beyond what my body was telling me.
The number of projects that I had going within my pharmacy practice
was very demanding. There was no way for me to accomplish the work
that needed to be done without pushing myself. My Dad told me
many times I could accomplish what ever I set my mind to do.
He never pushed me, but his kind advice drove me be
successful, hence I became an over-achiever. I am thankful for his
love for me in doing this.
Recently, I read an article about daytime drowsiness in DLB and Alzheimer's.
This study was done by Mayo Clinic. They found that during four
daytime nap opportunities, over 80% of those with DLB fell asleep
in 10 minutes. Those with Alzheimer's fell asleep
40% of the time in 10 minutes.
Pathological sleepiness is defined as falling asleep in less than 5 minutes.
In the case of DLB, the participants fell asleep 60% of the time, while those
with Alzheimer's fell asleep 20% of the time within 5 minutes.
Those with Alzheimer's in the study group were in the more
Interestingly, the study revealed that the presence of hallucinations,
parkinsonism or REM sleep behavior disorder was not related.
Also the study revealed that the daytime sleepiness may be attributed
to neuronal changes in the brain sleep-wake systems
in patients with DLB.
Fight like a Tiger - Be LBD Strong
©June 12, 2016 Robert Bowles
TOGETHER WITH DEMENTIA AND RA WE CAN FACE THE JOURNEY
The date was August 16, 1970, forty-six years ago. Judy Kathrine Shaver and Robert Cornelius Bowles, Jr. were married at Thomaston First Baptist Church.
Ohhh, what a happy day.
Has it been easy, NO. My graduation from pharmacy school was one week later. Then it was off to work. Judy was in the process of completing her college education. Hint - she is 3 years YOUNGER than me.
God never promised us a rose garden, but He did promise that he would never leave us nor forsake us. Three years after being married, our first child was born. Four years later our second child was born. Three years later our son was born. Now the Bowles name could continue.
Within months after our son was born, Judy began having health issues. First no one could determine what could be happening. Then one day, the physician ordered a new test, and a diagnosis of Systemic Lupus Erathemtosus (SLE) was given. She was only 31 years old. With three children, we had no idea what was before us.
Beginning three years after diagnosis Judy was in the hospital one hour away from home, 3 to 4 times each year, receiving 1,000mg of steroids IV daily for 3 days. During those years which lasted about 10 years, she was able to do very little.
At the time of diagnosis, our oldest daughter was 8 years old. This sweet girl helped her father take care of the other two children. I am eternally thankful for what she did. My outlet was to play racket ball almost every night for 2 hours after getting the children to sleep.
Life moved on and ultimately Judy began doing some better.
Fast forward, age 64, I was diagnosed with Lewy Body Dementia (LBD), 18 months after selling my pharmacy. Two years later, Judy's SLE was in remission; however, she was then diagnosed with Rheumatoid Arthritis (RA).
Now she gets infusions every 8 weeks to treat the RA.
What do you do when this happens? You take the strong faith you have
and make it stronger. Faith can never be too strong. God's word tells Judy and me that He will never leave us nor forsake us. He will supply all of our needs, even in the valleys and the mountains, He is there. This is what sustains us.
Is it easy NO? I do however have a peace that passes all possible understanding. I do not fear anything. The journey which we have been on since we got married has only made us stronger. We have resources now, not financial, but others that make life worth living and living it to the fullest.
YES, WE BELONG TOGETHER
Fight like a tiger - Be LBD Strong
©June 8, 2016 Robert Bowles
What is one of the most important things one can do after a diagnosis of dementia? First, we must ACCEPT our diagnosis. This likely will take some time...we have just been hit with a Mack Truck. For me, my first response was "It is what it is and everything will be okay". Most likely that response was because of my faith, and I am a positive person.
Three months later.....my thoughts were different. I felt as if I was a convicted murderer. The physician had entered the charges, the jury had found me guilty, and the judge had issued the death sentence without appeal. Now I had a difficult situation to resolve. What would my response be? I can tell you, it took some time to sort through all of those feelings and emotions. I thought about the physical, mental, emotional, financial, legal and much more that needed to be considered. I had some experience with this because Dad had Vascular Dementia and Mom had Alzheimer's, but this did not prepare me for it being ME. At the time of diagnosis, I was 64 years old.
Let me suggest that we evaluate our ATTITUDE after our diagnosis. ATTITUDE will have a huge positive effect on anyone with dementia regardless of the type dementia. We have a choice as we decide what our ATTITUDE will be.
Will we choose to be NEGATIVE, and only see doom and gloom? I would suggest this rarely, if ever, will provide a peace to face the days ahead. Negativity will most always yield poorer outcomes. For me, it would be almost like sitting around to die.
Or, will we have a POSITIVE ATTITUDE? This most often will lead to better outcomes. Many surgeons have told me, they would rather operate on someone with a positive attitude rather than a negative attitude. Their reasoning was the outcomes would be better.
Soon after diagnosis, I was told the average life expectancy was 6 to 8 years. Several months after diagnosis I asked, "What is the range of life expectancy". The answer was 2 to 20 years. A light bulb went off inside my brain.
Telling my wife that I was not a statistic was letting myself become free to live. I told her that I was a LIVE HUMAN BEING, and I would beat the 20 years. Will I beat the 20 years? I, like everyone else, have no idea. The benefit though is that it changed my ATTITUDE, and I decided LIFE was worth living to the fullest.
My life over the last 3 of the 4 years since diagnosis has been some of the best years of my life. No longer do I focus just on living today, but living every day. I began spending a lot of time in dementia advocacy with my website lbdlivingbeyonddiagnosis.com and my Facebook Page. I became active with the Lewy Body Dementia Association and Dementia Mentors where I am able to meet with others living with dementia in the United States and Europe, three times each week. Also, I am able to meet virtually and mentor others living with Lewy Body Dementia (LBD) just like myself.
Almost a year ago, I was appointed to the Advisory Counsel of Dementia Action Alliance. Since March 2015, I have been spending a lot of time preparing for a "Day of Dementia Education with Teepa Snow" event in my hometown of Thomaston, Georgia.
My faith along with my desire to help others has given me a strong purpose in life. Purpose can be one of the driving forces in each of our lives. Now I can take time to smell the roses, look at God's creation, enjoy the butterflies, watch the birds, and listen to the birds chirp.
My living with LBD is very challenging to say the least for both me and my wife. My heart goes out to my wife as she is having to go through this. Together we will face each day with as much of a positive attitude as possible and look for brighter days ahead .
Fight Like A Tiger - Be LBD Strong
©June 6, 2016 Robert Bowles
Two nights ago was the first restless night, lasting all night long that I have experienced in the four years of having Lewy body dementia (LBD).....realizing many times during the night the restlessness was occurring but never fully waking up. This morning was complete exhaustion. What do I do when this occurs? Take it ease, take it easy, and take take it easy. Time for recovery is essential. So, what am I doing today? Taking time to play with my 8 year old granddaughter, Morgan. She always lifts my spirits when she spends time with her JuJu and PaPa.....playing UNO and just peace and quiet.
Living with LBD rarely provides a vacation from Lewy where there are minimal if any symptoms taking place. Likely because LBD is a multi-system and complex disease. There are 1.4 million people in the United States living with LBD, making it the 2nd most common type of dementia.
(1) The cerebral cortex, which controls many functions including information, processing, perception, thought, and language.
(2) The limbic cortex, which plays a major role in emotions and behavior.
(3) The hippocampus, which is essential for forming new memories.
(4) The mid-brain, including, the substantia nigrea, which is involved in movement.
(5) The brain stem, which is important in regulating sleep and maintaining alertness.
(6) Brain regions important in recognizing smells (olafactory pathways).
What symptoms do we see take place?
(1) Visual hallucinations early in the course of dementia.
(2) Fluctuations in cognitive ability, attention, and alertness.
(3) Slowness of movement, difficulty walking, or rigidity (parkinsonism),
(4) Sensitivity to medications used to treat hallucinations.
(5) REM sleep behavior disorder, in which people physically act out their dreams by yelling, flailing, punching bed partners, and falling out of bed.
(6) More trouble with complex mental activities, such as multitasking, problems solving, and analytical thinking, than with memory.
(7) Nightmares and delusions may take place.
(8) Other things that may be seen in LBD are Repeated falls and syncope (fainting). Transient, unexplained loss of consciousness. Autonomic dysfunction. Hallucinations of other senses, like touch or hearing. Visuospatial abnormalities. Other psychiatric disturbances. - See more at: http://www.lbda.org/content/symptoms#sthash.itsWBiYc.dpuf
(9) Symptoms may fluctuate as often as moment-to-moment, hour-to-hour or day-to-day. - See more at: http://www.lbda.org/content/symptoms#sthash.itsWBiYc.dpuf
Fight Like a Tiger ---- Be LBD Strong
©June 4, 2016 Robert Bowles
Robert Bowles, Jr.