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
Robert Bowles, Jr.