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
Robert Bowles, Jr.