Recently a new friend in Iowa, Dina Emberlin, ask me if I knew I had not written a blog since May. It shocked me that I had not written one.
Reflecting on those six months, I realized that I had spoken 18 times. Yes, that was an average of 3 times a month. WOO, I sure hope my Neurologist does not find this out. He continues to caution me about the energy I'm expending with all my advocacy. There had not been enough time for me to blog.
Now that you know why there were no new blogs, I'm ready to fire the blogging engine up again. Here are some of the places I've been during those 6 months.
May 5th, we hosted an event at Thomaston Ford which was very successful. Next year, we will take part of these funds and use them to offer a 3-hour program for family caregivers. The next day, we will have a full-day of caring and dementia education for professional care providers in Long Term Care, Assisted Living, Memory Care, Home Health, and Hospice. It will be held in Thomaston and we will reach our six contiguous counties. Our outreach was 188 people.
May 11, I was honored to speak to a morning and evening group who are members at Park Springs in Stone Mountain. Park Springs recently opened a Health Center which provides Long Term Care, Rehab, and Memory Care. This is a state of the art community. They also provide independent living, assisted living and respite. There are 500+ members on campus. Outreach was 97 people
May 17th, I was honored to speak to the Georgia Area Agency on Aging, Next Generation Care Providers in Gainesville, GA. This group was very engaging and passionate about the care they provide. Outreach was 78 people.
May 31st, I attended the Georgia Area Agency on Aging, Three RiversC Caregiver Conference in Newnan, GA. Three Rivers provided an outstanding day of education for care providers. During the breaks, I was able to answer questions that attendees posed to me. Outreach was 212 people.
All of these were a lot of fun; however, it did cause me to neglect my blogging.
Tomorrow, I will share a few more days of what I've be up to.
Remember, stay strong and do not let dementia define who you are!
©November 23, 2917 Robert Bowles
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
Today's blog applies to preparing for doctor visit regardless of the type dementia one might be living with. My diagnosis of Lewy body dementia (LBD) occurred 5 years ago. LBD affects six parts of the brain. These parts of the brain affect information processing, perception, thought, language, emotions, behavior, memory, movement, sleep regulation, maintaining alertness, and smell (olfactory pathways).
Symptoms of the disease may include: visual hallucinations, audio hallucinations, fluctuations in cognitive ability, decreased attention, decreased alertness, slowness of movement, difficulty walking, rigidity, sensitivity to medications, REM sleep behavior disorder in which people physically act out their dream, more trouble with complex mental activities such as multitasking, problem solving, and analytical thinking than with memory.
With all of the parts of the brain affected and the diffuse symptoms that can be present, it is no wonder that LBD is a very complex disease. Often times it is referred to as a disease of many faces and/or a roller coaster ride. The way the day starts for the person with LBD may change many times throughout the day. A few years ago I did a blog on six brains in one day. Very few doctors understand the complexity of this disease.
Because of the complexity, it is important to have a doctor who understands the scope of this disease. Doctors have limited time scheduled for appointments; therefore, it becomes incumbent upon the patient and family to prepare for the doctor visit.
My process in preparing for the visit starts by having an up to date record of every doctor that I see (name, specialty location, phone number), drug sensitivities, medication list (including name, strength, directions), adverse drug reactions, allergies, surgical procedures and immunizations. I choose to use a word document. This document is updated every time I see a physician.
Between office visits, I make notes of changes in my disease. I do this simply as reference point. As time approaches for my office visit, I will review my list of symptoms and remove any that might have improved/resolved.
The Lewy Body Dementia Associaton has incredible resources for families affected by dementia. I choose to keep links that will directly send me to the website page that contains the information needed at time. Visiting Lewy Body Dementia Diagnostic Symptoms Check List.
Select the top three to talk about at the appointment. Give the list the Nurse or Medical Assistant and she will give to the doctor. This should insure that you will receive answers to the most important symptoms. Now you are ready to focus on listening to the doctor address these most significant symptoms with less fear, stress and agitation. Take notes or have your loved one take them. This entire process provides for a more peaceful, productive office office visit and better outcomes.
Let's help each other through this journey. United we stand, divided we fall.
Wishing you a warm and happy day!
#LBD #Dementia #LivingBeyondDiagnosis #Symptoms #Peaceful #Productive #BetterOutcomes
© March 3, 2017 - Robert Bowles
Over stimulation even in the early to mid-stage of Lewy body dementia (LBD) sometimes feels as if you have been kicked by a bull. You want to run, but your brain struggles to find an escape. All of a sudden you see an escape and run for your life as fast you can. As you are running for all you are worth, you find that the over stimulation is far too much to bear. Retreating more must be the only answer. Off to the races and you realize that you are zoning out and barely awake.
You struggle to find a way to recover and all of a sudden you see a recliner. Laying back in the recliner while seeking to relax and suddenly you realize that you do not know what is next. After zoning out and napping before awakening to find the thief in the night has disappeared into the the distant forest. Thinking and wondering if and when the thief will return, you dust yourself off for the race ahead. Searching and finding those who are living with dementia and working so hard to change the lack of understanding and stigma they witness. Now you are ready to enjoy the day and get back to helping others who are struggling with a disease that has no cure.
© November 26, 2016 - Robert Bowles
Fight Like a Tiger - Be LBD Strong
Dementia Family Caregivers are among the unsung heroes in life. They have been given one of the most difficult jobs with limited resources. They pour their heart and soul into caring for their loved one. Their heart breaks as they see the subtle changes and sometimes major changes taking place. I understand because my mother had Alzheimer's and my Dad had vascular dementia. I no longer take care of someone with dementia. I am now the recipient of my wife do things for me that she has never done before or even signed up for.
Now, I see things through the eyes of someone experiencing balance, gait, freezing of gait and hand, GI, audio and visual hallucinations, dreaming, nightmares and dream acting symptoms all because of a diagnosis of Lewy body dementia. Using my faith as my foundation and searching for ways to have a better quality of life has enabled me to have peace and joy even amidst my circumstances of life.
Let's turn to something that is much more important to me. My bride, Judy Shaver Bowles, is my earthly anchor. She is my rock. We have loved each other unconditionally for 46 years. We have three wonderful children with beautiful families and seven grandchildren that are the joy of our life.
Seeing Judy struggle as she whiteness the changes in me without regard to time or place breaks my heart. The pain and heartbreak that I see in her eyes and face at times is very sobering. There are times I go into my office and just cry behind closed doors. I can't fix her Rheumatoid Arthritis nor can I fix my LBD. I can only pray for her.
I know that I will be fine regardless of my situation, but I continue to cry as I think about the uncertainties that she must feel. The stress that dementia caregivers are experiencing is unimaginable to anyone who has not been a dementia caregiver. I would suggest that the grief starts early in the disease process for most caregivers and continues beyond the loss of their loved one. What a burden to live with.
To ALL of you caregivers: You face each day with grace and dignity driven by faith, determination and strength. Each of our families affected by dementia must focus on the good times and enjoy them to the fullest. We must support other families affected by dementia for it is by getting outside of ourselves that we find we do better. For those families dealing with less optimistic situations, look for those snapshots that take place and cherish them. You will be glad you did.
From the bottom of my heart, I say THANK YOU to all dementia caregivers. You are truly the champions in this journey. You have given of yourself unconditionally, lost relationships and friends and have done what you were called to do to the best of your ability. To EACH ONE OF YOU, please continue to take care of yourself. That is what we want. My thoughts and prayers will continue with every family affected by dementia. One day, there will be a cure, but for now, let's focus on care before cure. Love to each of you!
© November 13, 2016 Robert Bowles
A few weeks ago, I received a phone call from someone who had attended our Teepa Snow Event. She shared with me that the event was wonderful and had given her dementia knowledge that she needed. This was an RN who had noticed changes in her husband and had not be able to find answers.
I looked at her Facebook Page before she called me. She shared with me the changes that she had witnessed in her husband. My first question to her was "Is the picture on your Facebook wall your husband". Her husband is 55. My last question was "What do you think is causing the changes in him?" Her answer was Lewy Body Dementia.
After her response of LBD, I shared with her that I had arrived at the conclusion that LBD should be considered. based upon the apathy in his face and symptoms that she had shared with me.
Does he have LBD? We do not know,
A well trained cognitive neurologist will have the skills to possibly eliminate other causes that might be present. When the cognitive neurologist does this, the nurse and her husband will likely know an accurate diagnosis. Early diagnosis is very important. Receiving early and accurate diagnosis is important. This provides time for families affected by dementia to address legal, financial, spiritual and other needs. Acceptance of the diagnosis is a cornerstone to a more peaceful journey. Three other parts of the cornerstone are socialization, attitude and purpose. When these four things are present, the foundation of the house is built. Now, we are ready to begin our journey of living with dementia.
As we travel our journey, there will be ups and downs. I had ups and downs at the time of diagnosis and still have them today. Learning compensatory ways to address losses will serve us well. We engage our brain to find an alternative way to accomplish the same thing. Sometimes this feels like climbing a mountain. We might stumble and fall along the way or we might tear some skin off when we fall. Victory is celebrated when we reach the top of the mountain. We are able to look down to the bottom of the mountain and say, WOW, I did it! The feelings that we experience at that point in time make it worth all the difficulties along the way.
Stay strong my friends. We are in this together!
Working Together, We Will Change the Culture of Dementia
© September 19, 2016 Robert Bowles
Parkinson's Disease is a complex disease. With Lewy body dementia, it is often referred to as Parkinsonism. Sometimes I find the dots and dashes do not connect when I tell my brain that I want to do something.
Recently, I told my brain that I wanted to step forward. Guess what, "I stepped backwards. It took a few seconds to regroup. After regrouping, I walked forward. The next day, I told my brain that I wanted to step forward. This time, I stepped sideways. When this occurs, I must realize that I am at greater risk for a fall occurring and a possible hip fracture. At this point, I need to have a compensatory way to keep this from happening.
I talked with a Physical Therapist this morning. I told him that I have always spoken fast and moved fast. My thoughts were that it was a processing and retrieval issue. He said, "That is what it is". He said, "The brain must communicate with the muscle so that the desired results can be achieved".
I shared with him my hypothesis. If I slow down, my brain will have more time to connect with my muscles. He told me "That is a good hypothesis. Hopefully I can make the transition to slow down so that my legs can catch up with what I want them to do. After finding the outcome of my hypothesis, I will share the answer.
©August 17, 2016 Robert Bowles
Fight like a tiger, Be LBD Strong
Yesterday I visited someone an hour away from my home. He had been in a wreck and broken his back. Two weeks earlier, his wife told a neurologist that she was concerned that her husband might have dementia. The neurologist told her that he did not have dementia.
Two weeks later, he was admitted to the hospital with a broken back. To days after admission, he was diagnosed with Lewy body dementia. His wife called to inform me. She called me back eight days after he was admitted to the hospital to tell me that things were not going well. It was very evident that she was stressed and did not know what to do. I realized that because of how Judy and I after my diagnosis. I asked her if she would allow me to come the next day and be her advocate. She accepted.
As my wife drove me to the hospital, I prayed that God will provide ALL the resources that I needed to abate any possible triggers that might cause me to have an emotional outburst. I prayed that He would keep me calm and focused. I prayed that He would provide at least one physician for me to talk with and many allied professionals. I told Him that I was giving Him ALL Praise, Honor and Glory for the good that might come out of my visit.
By going yesterday to visit him, I experienced one of the greatest blessings of my life. I was there for eight hours. The wife had not gone home in nine days. I asked her to go home, get some rest and do the errands she needed to do and that I would take care for her husband.. I told her that if she did not take care of herself that she could not be able to care of him.
Starting from the time I began walking down the hall toward his room, I focused on the environment that someone with dementia was staying in. The loud conversations of the staff and others in the hall were about to cause me an emotional outburst. Over the next eight hours, one physician and fourteen allied professionals asked me questions and intently listened to my replies. I was able to teach them how to interact and communicate more effectively with someone with dementia.
The physician talked with me for for one hour. She was very humble and wanted to provide the best care for her patient. During my time with her, she asked me specific questions related to the patient's situation. One question related to the fact that the patient had not slept in two days and nights. I explained to her how my Neurologist in Atlanta had addressed my sleep issues at the time of my diagnosis. She started the two medications last night that I told her about. The wife of the person diagnosed with LBD sent me a message this morning. He had slept all night long and was now sitting in a chair talking with her. Yesterday, he was mumbling. Each of these healthcare providers wanted to learn how to more effectively interact, communicate and care for someone with dementia.
The physician had excellent skills with her interaction and communication. As I watched some of the allied professionals, there were times I had to fight within my inner being to keep from having an emotional outburst because of their approach to the patient and attempting to get him to do something. I had to get my brain wrapped around the situation so that I did not lose it and upset the apple cart. As the shift changed yesterday evening, there were four more allied professionals who came to me and asked me to teach them what I had taught the others. Those first fourteen allied professionals made the necessary changes to accomplish better outcomes. Hopefully the final four allied professionals will make that same change. This would bring the total to nineteen professionals who are better equipped to interact and communicate with a person with dementia. These professionals and the person living with dementia will have a better quality of life because of the changes that were made.
Thank God, He enabled me to stay calm in the midst of a possible storm. To God be the glory, great things He hath done!
Working Together We Will Change the Culture of Dementia
©August 13, 2016 Robert Bowles
The light bulb above represents some possible answers to what triggered my most recent emotional outbursts. I have been preparing for our "Day of Dementia Education with Teepa Snow since February 2015. I have expended hundreds of hours since February 2015 to achieve a great event. The event will be on August 30, 2016. We will have 900 people attending. Presently we have 750 registered. This has been and will continue to be a wonderful and joyous experience for me. I see the potential for 900 lives being transformed.
Care-giving is a very difficult responsibility. As caregivers implement Teepa's teaching, their quality of life will likely improve. Many times the caregiver causes triggers to take place in their loved-one. It is not planned nor is it done on purpose. Likely it occurs because of the stress the caregiver is under. These triggers may often result in antipsychotic medications being given that have significant side effects. Decreasing or eliminating those triggers will help improve the quality life of the loved-one.
Being part of changing the culture of dementia is one of my main focuses in life. The purpose this gives me has enabled me to do things I have never done before. It has enabled me to have higher scores on my neuropsycholical tests than I did at the time of diagnosis in 2012.
With all of my efforts in planning this event, there appears to be some collateral damage. While my neuropsychological tests have been higher, my processing and retrieval have declined along with an increase in dreams, audio hallucinations, visual hallucinations, nightmares and dream acting. These are occurring an average of once a week. Sometimes all of these things are taking place at the same time throughout the night without me ever waking up. My trigger related emotional outbursts have increased.
Where do you turn when you find yourself in this situation. All of us have choices. I chose to turn to a trusted friend. He is in his 13th year of living with Alzheimer's. He fully understands the dynamics of living with dementia. We have become like twin brothers.
My first three and one-half years after selling my pharmacy were filled with a lot of difficult situations. First it took eight physicians and eighteen months to receive my diagnosis. I was sleeping 16 to 20 hours a day. My wife would wake me up and tell me to eat, brush my teeth and go the restroom. One and one-half years later, my colon ruptured. Within one hour, I was in the operating room for emergency surgery. I came out of surgery, and I had a new attachment to my body. It was an ileostomy on my right side. Three months later, my ileostomy ruptured. More emergency surgery. Three months later, there was cervical disc replacement. I had been put to sleep three times in six months. I was at very low spot in my life.
What happens when you get to a low spot in your life? All of us have a choice. I chose to find resources. The first resource I found was Dementia Mentors. Their inaugural Virtual Memory Cafe was in June 2014. Harry Urban led that first cafe. He had been living with Alzheimer's for 12 years. After the cafe, I asked Harry if he and I could chat that afternoon. His answer was "of course we can." Harry fully understands the dynamics of living with dementia, and he enjoys sharing his knowledge and life experiences with other dementia families. That afternoon he became a mentor to me and our friendship has grown much stronger. When I am down , he lifts me up. When he is down, I lift him up. We tag team. Harry is now in his 13 year of dementia and spends many hours helping others that are groping in darkness.
Paul Harvey's comment was always "and the rest of the story". Return to my blog tomorrow and you will read the rest of the story....."The Light Bulb Came On and There Is Hope!
© August 6, 1016 Robert Bowles
Sharing with you today a comment that I received on a blog that I did a few days ago. A gentleman from California requested an interview with me and had written an article. The lady who commented on the blog was from Canada. Her comment is below.
"Dad had the same diagnosis with the same symptoms. We need our family physicians be more educated on this disease as that is where we start our journey, and it would help to diagnose sooner:"
One day I ask my college roommate, who is Professor Emeritus at a major Medical School, "what will it take to change the culture in regards to receiving an early diagnosis of dementia"? His response was that it would need to start with the medical students. My diagnosis involved eight physicians and eighteen months. No one was putting the puzzle together until I was referred to a major cognitive and memory clinic in Atlanta. Family practice physicians diagnose 10% of those with LBD. They take care of 90% of those living with LBD.
Valuable time is lost for the person being diagnosed when there is a delay in getting them to a Cognitive Neurologist. There is much that can be done with an early diagnosis. There is life beyond the diagnosis. Much planning must be done to protect the family with all of the "what ifs, including legal, financial, healthcare directives and others.
For those that struggle to receive the diagnosis, they must remain strong and steady. They must continue to forge ahead to get an accurate diagnosis. With determination and an early diagnosis, the person has time to adapt, make plans, enjoy living, enjoy family, check things off the bucket list, advocacy, making a difference in the others lives and finding new hobbies. I am confident that you will be able to think of many more. Working TOGETHER we will change the culture of dementia!
Fight Like a Tiger - Be LBD Strong
©July 31,2016 Robert Bowles
Most of my time lately has been spent in our planning for the Teepa Snow Event on August 30th. It has become difficult for me to find time for all that is taking place in my life. First I must stay strong in my faith. This is my anchor at all times.
I must manage the complexity of living with Lewy Body Dementia (LBD). I must have time for my family and enjoy the time with my grandchildren. Planning an event that will have 900 attendees is no small task. The dream of having Teepa Snow come to Thomaston, Georgia came to me in February 2015.
After talking with Kelly Creviston (Teepa's event scheduler) in March 2015, I found the earliest date would be August 30, 2016. As during my professional career as a pharmacy owner, my brain began to race with ideas of making this event a reality. My passion has always been in helping my patients in my pharmacy understand ways to manage their health issues through education, love, compassion and empathy. One year after my diagnosis of LBD (June 2012), I found this same passion for those living with dementia and their caregivers.
As I have traveled these last 18 months, God has sustained me through every step of the way. There have been many times that were difficult. There were times I did not know if I could keep going. During these 18 months, my neuropsychological test has improved.
Parkinson's symptoms have intermittently increased. Sometimes I have experienced freezing of gait and freezing of hand. Sometimes resting tremors as seen in Parkinson's Disease have occurred in addition to ever present action tremors that I have experienced since the age of 18.
Mental processing and retrieval have declined. Triggers and outbursts have increased. Visual and audio hallucinations have increased. Dreams, nightmares and dream acting have increased. Some nights are fully consumed without a break with these. Waking up in the morning, I often hurt from my toes to my shoulders where I have been moving and kicking all night long. Through constant brain stimulation with brain games, reading abstracts, reading other scientific literature and other readings, enjoying time with family, my memory has sustained and even improved from my first neuropsycological test. Those of us living with dementia cannot rest on our laurels and think that we will have the best outcomes.
Only through God's love, mercy and grace can I continue. Experiencing these things has caused my faith to grow stronger. The peace that God gives me is beyond human explanation. God continues to supply all of my needs. He never leaves me nor forsakes me. Even in the darkest moments, I feel his presence as He lifts me up and takes me through the valley.
God blessed me so much by bringing people into my life that have the same passion as I do...."WORKING TOGETHER WE WILL CHANGE THE CULTURE OF DEMENTIA". I must stay strong in my faith and have time for my family. Hours are spent daily in brain storming, meeting with key resources, and executing the final preparation for this big event where we will have 900 people in attendance.
Friends like Elaine Harrison and Ann Butts have been "Rock Stars" in their assistance. Last year Dementia Action Alliance asked me to be on their Advisory Council (all of us on this council are living with dementia). The co-leaders of DAA are Karen Love and Jackie Pinkowitz. They are truly amazing. Their understanding and passion for person-centered-care and the importance of hearing the voice of those living with dementia is always present. Person-centered-care is one of my main focuses because it provides hands on care that has an extraordinary impact on the person living with dementia. When this takes place, we will begin to see many positive changes in the area of care.
Several months ago, I met Robin Florence Andrews and Ryan Florence. They are truly outstanding people. Last week they set up a meeting for us. It was a power-packed meeting lasting 2 hours. Through it, we found many common goals in our vision for changing the culture of dementia. They are part of the leadership of Spotlight on Dementia Foundation. I explained to them the difficulties that I was now experiencing....the finite details of everything being in place. Ryan graciously offered to manage the event to completion. WOW, what a relief for me. Robin graciously offered to manage other parts of the finishing touches. Corrie Phillips with Teepa Snow graciously offered to manage another area. God provided!
Joy, joy, joy. It is so wonderful to see God's mighty hand at work as He brings people together with common visions and goals. All of the dementia advocacy organizations are working hard to make a difference in the world of dementia. Each organization has their vision and plan for making a difference. The end results will be a plethora of resources. Utilizing these resources will provide understanding, knowledge and support. These things will have a positive impact on both the person living with dementia and caregivers.
FIGHT LIKE A TIGER --- BE LBD STRONG
WORKING TOGETHER WE WILL CHANGE THE CULTURE OF DEMENTIA
©July 26, 2016 Robert Bowles
Sharing with you today a comment that I received on a blog I did a few days ago after a gentleman from California requested to interview me. The lady that made the comment is from Canada. She literally hit the "nail on the head".
Link to Article
"Dad had the same diagnosis with the same symptoms. We need our family physicians be more educated on this disease as that is where we start our journey, and it would help to an early diagnosis.
I ask my college roommate, who is Professor Emeritus at Vanderbilt, "what will it take to change the culture with regards to early diagnosis of dementia"? His response was that it needed to start in the Medical Schools. Family practice physicians diagnose 10% of those with LBD. They take care of 90% of those living with LBD.
Valuable time is lost for the person being diagnosed when there is a delay in getting them to a Cognitive Neurologist. There is so much that can be done with an early diagnosis. There is life beyond diagnosis. Much planning must be done to protect the family with all of the "what ifs?, legal, financial and others.
For those that struggle to receive the diagnosis, they must be strong and steady. They must continue to forge ahead to get an accurate diagnosis. At this point in time, accepting the diagnosis will largely define the journey in most people. Working TOGETHER we can change the culture of dementia!
Fight Like a Tiger - Be LBD Strong
©July 5,2016 Robert Bowles
It Is important to plan for the what ifs when dementia is part of the equation. For my wife and me this was very important. One never knows when they or their loved-one might end up in the Emergency Room or in a hospital. Approximately one in three people living with dementia will be admitted to the ER or hospital every year. This establishes a basic tenet for the importance of being prepared for the what ifs. What if you or your loved-one ended up in the ER or hospital? What would you do if they told you at 4:00 PM one day that you or loved-one were being discharged? You would need to go to a Memory Care Center or a Long Term Care Community.
My life experiences have given me insights into the stage of life that I am now living. During my high school years, I worked at a men's clothing store and later during my high school years worked at a pharmacy. Later I worked at a funeral home in my hometown. My first year of pharmacy school, I did not have a place to live. The funeral director that I had been working for made arrangements for me to work at his friend's funeral home in Atlanta. I lived in the funeral home and made ambulance calls and death calls at night. In the daytime I went to pharmacy school. In my second quarter of pharmacy school, I moved into an apartment. In the afternoons and on the weekends, I would intern at a pharmacy in Decatur, Georgia. My second year of pharmacy, I transferred to the University of Georgia College of Pharmacy. Each weekend, I drove home to intern at a local pharmacy. It was here that I met my bride.
My pharmacy career consisted of retail, long term care, assisted living, terminal pain management, compounding, diabetes education, therapeutic shoes, therapeutic stockings, intravenous nutrition and other IV medications. For 15 years, I reviewed every patient's chart in the 750 nursing home beds that I serviced. My Mom had Alzheimer's and my Dad had vascular dementia. Nothing prepared me for my diagnosis of LBD. In the later years of my professional career, I was on the Executive Committee of the Georgia Pharmacy Association for five years. My fourth year, I was President. My fifth year, I was chairman of the Board of Directors. This gave me experiences of seeing what was taking place in the entire country in the arena of pharmacy.
These experiences prepared me for the what ifs of living with dementia. My wife and I have visited six Assisted Living and Memory Care Communities. We have ranked these largely on my life experiences, but also including my wife's feelings as well. It has been a TEAM effort. One community stood out to us. There is one that is a close second. This enables us to face the what ifs in an immediate situation of my needing to have additional care.
Before arriving to visit the community make sure you made an appointment. Tell them your reason for wanting to visit the community. Visiting the community does not mean that you or your loved-one is ready to live in the community. Even ask if you might have lunch with them that day. This will give you an idea of what type food service they have.
What are some things that we observed? First we looked at the physical setting of the community. Did it appear to be a safe environment? Then we looked at the appearance of the exterior from the parking lot to the front door. We looked at the back of the building. Does the building have a patio or area outside that is securely locked for you or your loved-one to go outside? Touring the entire interior of the building is essential.
We can gain knowledge from talking with the Administrator. What is his or her goals for the community? Does she actively watch what takes place within the community? What is her relationship with staff?
Setup a meeting with the Director of Nursing before your visit. Prepare questions that you would like to ask. Some questions that you might ask are as follows. Do they have different villages within the community? If so, what criteria is used for placement in one village versus another village? What type activities take place in each of the villages? What is the resident's
schedule? Do they have volunteers or staff who come in and interact with the residenta? Do they have volunteers or staff who come in and play games with the residents? Do they have volunteers or staff who come in and sing with the residents or play musical instruments for them? How much access does the community have to physicians, pharmacists or nurses? Is the resident permitted to go on trips? This is just a sampling. I am confident you will think of many more.
Lunch with the staff is important. You will be able to interact with them, and also see what type food they are serving. You will be able to observe the temperature of the food they are serving. Observe the dining hall while you are at the community. You will be able to see how the staff interacts with residents. How much assistance do they give them? Do they address food allergies, sensitivities and likes? Does the community have trained staff to provide food at odd hours?
Touring the facility, you will want to observe the cleanliness of the community. Talk with families that might be present. If it is a two story building, see if there is an elevator? What is the staff to resident ratio? What is the monthly cost? Are there possible additional costs that might be incurred under certain circumstances? What is their process with end of life? Are they able to provide pain management or other needs at the end of life?
Is there a game room? Is there a movie theater? Are the rooms private?
Do they have a hair salon? How many meals a day will be provided each day? How often are they given snacks and liquids throughout the day? How is your loved-one approached if they have an emotional outburst? How is it handled? Do they immediately call the physician and get some medication ordered, or do they look for ways to diffuse the situation? How will you be contacted if your loved one needs something? Do they have a NP or PA? I am confident that you will think of others.
Doing these things early can diminish the frustration and stress at a difficult time. Please private message me on Facebook with any other thoughts you might have. In a week or two, I will develop a document that can be used as a checklist with your visit. Also, I will provide for short notes.
Fight Like a Tiger --- Be LBD Strong
©July 3, 2016 Robert Bowles
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
Robert Bowles, Jr.