This past Saturday, I gave Lewy Body Disease (LBD) and especially dementia with Lewy bodies (DLB) a new alias. For the new alias I chose ASTOUNDING because of the events that took place in my body. Previously I have referred to DLB as a disease of many faces, peaks and valleys and the highest and lowest roller coaster anyone can ride. While I continue to do well on my neuropsychological testing, my physical symptoms continue to erode.
Friday night yielded very little sleep. I sleep in a recliner in the den because of my elevated blood pressure (supine hypertension) when I lie down. On this night, I woke up about every hour. My wife was sleeping in a bedroom close by but I would not wake her up. She needs her rest because she has Lupus and Rheumatoid Arthritis. During the night my gait was mildly altered as I would walk to the bathroom. Through all of this time my cognition was good. I had no feeling of being in a fog. Really, the gait and balance issues were no worse than they usually are during the night when I go to the bathroom multiple times. Exhausted but not able to sleep, I decided to get dressed.
About 2 hours later, Judy and I went to the grocery store. Enter Lewy!!!
As I walked into the grocery store, I immediately grabbed the first buggy that I could find. As I held onto the buggy and followed Judy, I began taking baby steps without being able to lift my feet off the ground. It was as if my feet were glued to the floor. My mind was clear throughout the entire time. As I continued to shuffle and struggle to keep up with her, I thought of a possible explanation as to what was taking place. It was as if the neuron(s) that were responsible for me walking were not functioning. No matter how hard I tried to pick up my feet, I was not able to do it.
The question entered my mind, "How can this be?" "How can the pendulum swing so far?" "How can my mind be clear and I can barely walk?" Every person with DLB has a different journey. When one of my symptoms of DLB increase, usually many of my symptoms increase. This experience was totally different.
Ten hours later, I got up out of my recliner and started walking to the back of the house where Judy was quilting. As I started walking, I immediately noticed that I was once again swinging my arms, picking up my feet and having a near normal gait. Still the unanswered question is, "How can this be?" "How can my mind be clear, but my ability to walk change so quickly?"
Be LBD Strong!
©2015 Robert Bowles
Lewy Body Disease consists of two types of dementia. When memory issues occur within the first year of motor symptoms, it is referred to as dementia with Lewy bodies (DLB). Memory issues occurring more than one year from motor symptoms is referred to as Parkinson's disease dementia (PDD). I was diagnosed with DLB, June 26, 2012.
I am not sure what path PDD follows since my personal research and interest has mainly focused on DLB. Having practiced pharmacy for 42 years has given me a keen interest in researching and learning more about this disease. Based upon my observations by being friends with people with DLB all across the world, I have found the path to be very unpredictable. One never knows what FACE of DLB will show up at any given time, what cognitive skills will be will be a problem at any point in time or what motor symptoms will be a problem at any point in time. Thus the roller coaster ride begins.
On Monday of this week, I visited the memory and cognitive clinic in Atlanta. First came the neuropsychological testing. I am always given the MoCA test. While I have read that this test takes around 10 minutes to complete, my test always takes around 45 minutes. I have read that the MoCA test includes testing of executive function which is not included in the MMSE. Additionally the MoCA test has been found to identify cognitive problems in people with Parkinson's Disease. I am thankful my testing is only about 45 minutes.
Monday's testing provided to me some confirmation of what I have been experiencing. The first part of the test, I went through with rapid fire. It was not that difficult. Enter the executive function part of the test. WOW!! It kicked my butt. Quickly I got to a point that I would give the tester one answer and tell them that I could not give them anymore. I explained to her that this was causing my brain to "sizzle". Thankfully the test ended quickly but the "sizzle" remained for several hours.
The results of the test were interesting. They confirmed what I had anticipated. My cognitive testing indicated that I had remained "steady". The NP told me that I was in the mild cognitive impairment (MCI) stage. In 2012 at the time of diagnosis, I scored 23. The average score for for MCI is 22.1. The average score for normal is 27.4 and the average for Alzheimer's is 16.2. My second MoCA test was in April 2013 and I declined to 21. I knew before taking the test that I had declined.
The MoCa test assesses cognitive abilities, orientation, short-term memory, executive function, language abilities and visuospatial ability. April 2014 testing yielded a result of 23, back to the original test in 2012. This test came after an extended time of talking with God in August 2013. During that time I found my new purpose in life and was able to start doing better. The test confirmed that I was doing better than I was in 2013. April 2015 testing reveled that while I was "steady" in my disease, I had decreased in executive function. My overall score remained the same at 23.
I have always been able to multitask 4 to 8 things at one time. No longer can I do this. Emotional outburst have become common when someone attempts to tell me too much information at one time or if they give more information than is necessary for me to know the intent of the conversation.
I read an article this week that indicated women speak about 20,000 words a day and men speak about 7,000, Typically we speak at the rate of 100-150 words per minute. I cautiously showed this to my wife. I suggested that this might be the reason why I have so many emotional outbursts when she is talking. I ask her to imagine that she was talking to me for one minute and that during that one minute, I had to process 150 words. Then, I would need to decide how to answer her appropriately. All of this I had to do with a damaged brain. While I have mild cognitive impairment, the decline in executive function causes these eruptions.
How do those of us who are experiencing executive function decline or dementia decline get past these situations? Those of us in these situations are not able to change. We have no control over the path of our disease. As anyone gets older without dementia, it becomes more difficult to change. I would suggest that those without dementia consider having a better listening ear and decrease the number of words that are used in their communication with someone with dementia.
The comments about the number of words and listening were taken from an article written by Elaine C. Pereira, Alzheimer's Reading Room
Be LBD Strong!
©2015 Robert Bowles
Brother Diagnosed With Lewy Body Dementia
This blog is written by my sister, Charlotte Bowles Baker. On two earlier blogs, she shared the impact of being a long-distance caregiver for both Mama and Daddy who both had dementia. In this blog, she shares the impact of now having a brother diagnosed with dementia with Lewy bodies.
Two or three years after Mama died with dementia, Robert started having health problems. He was losing weight, falling, blood pressure highs and lows, depression. When my husband and I saw him on Thanksgiving 2011, he was moving very slowly, and seemed out of touch with what was going on. He did not stay at his daughter's house very long that day. The future looked really bleak for him. It was like Robert's whole body was shutting down. One problem after another followed.
After seeing 8 doctors, he was diagnosed with Lewy Body Dementia. My first thought was, "Here we go again!" I had read an article about Lewy Body Dementia during the time Mama had Alzheimer's. I had no idea of all the dynamics involved in the disease. At least we had a diagnosis for what was going on in Robert's body.
This was another devastating experience. I knew what we had been through with Mama and Daddy. But neither of those prepared me for all the ramifications of this disease. For one thing I knew very little of what Mama and Daddy thought or felt as they progressed through the disease. People did not talk about dementia much in those days. Both of our parents were very private people and even in today's more open climate, I doubt that they would have shared much of what they were experiencing.
Times are drastically different than they were when our parents had dementia. I know much more of what is going on with Robert than with our parents. Technology has made it possible for me to better keep up with him and what he is going through. Everyday, I have some connection with him whether it be through phone calls, e-mails, texts, pictures, Facebook or Face Time. These venues have made it easier to live away from home. All of these do not take away the sadness or pain of seeing him experiencing such a disease. But there is joy in seeing how his faith is carrying him through such a difficult time.
Dementia Advocacy has made such a change in how people understand dementia. Videos, online chats, memory cafes, Facebook posts all enable the public to understand more about dementia. Just hearing about all Robert is doing wears me out. This has given him new purpose and meaning in life. He is living beyond dementia and showing others there is life after diagnosis. And there are so many others around the world who are involved in advocating for a disease that people have a tendency to shy away from.
In spite of Robert's cognitive skills as I write this, I see signs of diminishing skills. Physical decline is more apparent than mental. It hurts to see him on this journey, but like Daddy he is making the best of his situation.
Who knows if I will develop dementia? It's something I think about with my family history, but it's not something I'm obsessed about. Something is going to end our time on earth. You may know what that "something" is for you. At this point I do not. But I do know whatever happens to me, God goes with me, and one day I will meet Him face to face. There is peace in knowing Him.
©2015 Charlotte Bowles Bowles
Be LBD Strong!
The spouse of one of my friends with LBD sent me a text this morning because she needed to take her husband to the ER out of state. I quickly sent her links to the LBDA website so that she would have the information to share with the hospital staff. I was able to provide six different links for various situations. She just sent me another text and told me they were at the hospital and the nurse had never heard of LBD. The nurse told the spouse that the hospital groups ALL dementia under one category. The spouse relayed to me that "the lack of awareness of LBD among healthcare professionals is scary" and I would agree with that. The good part is that the nurse was receptive to the information that was provided to her and is asking the spouse before giving any medication to her husband.
Personally, I was given a medication one year prior to my diagnosis of dementia with Lewy bodies (DLB) that took me 15 months to recover from. I reached a point of sleeping 16 to 20 hours a day and was unable to do anything. Since my diagnosis, three years ago, I have been given 6 medications that I quickly recovered from, probably since I addressed the possibilities with the physician prior to taking the medication. In each of these situations, the physician agreed to reduce to the lowest dose and I still had an adverse reaction.
On another medication, the physician ordered the maximum dose of a medication over the phone without telling me the dose that he was going to give. When I picked up my prescription and saw this, I chose to cut the dose in half and still reacted. This reaction took almost 2 months to recover from.
When I had my cervical disc surgery, I was given medications during surgery that took me 2 and 1/2 months to recover from. Several months following surgery, I was given a low dose oral steroid dose pack. Not responding, the physician decided to give me a 12 day, large dose oral steroid pack. Again, this took 2 and 1/2 months to recover from. My neurologist has told me that he wants to write a paper on my medication sensitivities.
Statistics indicate that one-half of LBD families had an emergency last year.
How can you treat what you do not know. We must work harder creating more information/resources/knowledge so that proper care can be given.
Be LBD Strong!
©2015 Robert Bowles
Watching My Parents Decline While
Living Out of State - Part 2
Another issue was developing and once again denial was a big part of this issue. I started a journal early on with Daddy's dementia making short notes of things Daddy said and did through the years. Several years into this journey I wrote "Mama is unable to concentrate well. She doesn't remember well. I believe it's due to fear and exhaustion from Daddy's situation." Mama had always been quite dependent on Daddy. He was a take charge person, and she willingly let him take care of most things. I'm sure she saw her world crumbling right before her eyes. I knew she was overwhelmed with caring for Daddy for years. It did not cross my mind that she could have dementia. I was so consumed with "losing" the Daddy I loved that I was blinded to the fact that the Mama I loved was beginning her own journey with dementia.
I finally realized I could not run from the fact that Mama had dementia. I had kept a journal of Daddy's journey with dementia, but I realized I was too emotionally drained to keep a journal of Mama's journey. Daddy was still living, and I was too overwhelmed with all that was going on. I encouraged my parents to let someone come in and help them. After several discussion about this for many months, Mama finally consented to have someone hired to come once a week. That did not last long. Mama was sure she was taking her "stuff." When I would ask Mama what they had eaten that day, (frequent phone calls were the order of the day by then) she would become angry. "I don't know, but we ate." She was losing weight. I knew they were not eating as they should.
Finally in February 1996 Mama and Daddy went to live in an assisted living setting. Daddy seemed to adjust; Mama was not happy about this move at all. One of the big differences in the different types of dementia they had was their personalities. Daddy kept most of his personality. I do not recall him as being anything but gracious and appreciative of anything someone did for him, even on his death bed. Mama had a total personality change early on in her disease. She lost interest in reading, china painting, going to church, etc. She became very assertive.
Daddy died August 1996. In April 1997 we had to move Mama from assisted living to a nursing home. This was a very painful experience because we knew Mama never wanted to live in a nursing home. There was no way we could give her the care she needed. Visits with her were spent walking the halls or walking outside. We sat in the rocking chairs outside a lot. I would sing hymns to her. She loved her Lord. She had taught her children songs of the faith and had us memorize scripture. Perhaps the saddest day of my life was when I asked her if she knew who Jesus was. She replied, "No." From 2000 until Mama's death in 2008, she did not know who I was.
During these 20 years I experienced a lot of guilt that I could not be more help to my parents and to Robert and Judy. As I would leave to go back home, I would stop by the drug store and give Robert an assessment of what was going on with Mama and Daddy. I would get in the car and cry a good bit of the way home. I prayed and I cried myself to sleep a lot. Near the end of Mama's life I experienced anger. To think that she was 90 years old when she died and had spent 11 years of her life not really living was devastating to me. Robert and I each took our strengths and used them collectively to get through these difficult times.
My parents gave me a legacy of faith in God and scriptures from His Word that sustained me through this long journey.
©2015 Charlotte Bowles Baker
I would like to express my appreciation to my sister for writing these two blogs about her journey with having Mama and Daddy both having dementia. Saturday, I will share her blog about her thoughts on having a brother with dementia.
Watching My Parents Decline While
Living Out of State - Part 1
Written by Charlotte Bowles Baker
In June 1988 I was home visiting my family. Daddy was at home. He was supposed to go to work at the drug store around 1 pm. He didn't arrive so Robert called to say he wasn't at work. When Mama told Daddy that he was suppose to be at work, Daddy threw down whatever was in his hand and left for work. Daddy was a workaholic; he would never forget to go to work. Since retiring, he worked for Robert at the drug store. Mama told me that he had driven the wrong way on the street in town and sometimes got lost; he just kept driving until he found his way. Thus began a journey of 20 years of watching the decline and ultimate death of both of our parents with dementia.
Robert has asked me to share my feelings and experiences of living away from my parents during this difficult time. Keep in mind the time frame for my experiences is the 1990's and 2000's. People didn't talk about dementia much. Someone might be said to "have hardening of the arteries". There was not a lot of literature on the disease. The internet was just becoming available when Daddy was diagnosed in 1991. As I see all the advocacy for dementia going on today, I marvel at how much is available to help PWD and their care partners learn about the disease and how to live with it.
My initial response was one of denial with Daddy. I couldn't stand the thought of Daddy not being "Daddy." He was a wonderful father and a man full of wisdom. I had the utmost love and respect for him. To think that I would be loosing him bit by bit was almost unbearable to consider. When I would visit my parents, I would take them to their siblings and other relatives. I would tell those who were not aware that Daddy had memory problems. I have to say that Daddy made this journey as bearable as he was able to do. He had his sense of humor for quite awhile. One time he said, "I've been down in the mud, but now I'm happy as a pig in a pig pen." He said it wasn't okay that he couldn't remember; but, there was nothing he could do about it, and so he accepted it. On some occasions he would say, "It is so embarrassing not to be able to remember". I was so sad to know that he knew he "didn't know".
At some point in Daddy's disease, Robert took Daddy to Emory Hospital's Wesley Woods Geriatric Center. Daddy prepared for these visits. I think he went twice. On the trips to Atlanta, Daddy would practice what the day of the week was as well as answers to other expected questions. I see this from two perspectives. Daddy always went into anything prepared all his life. He knew he had memory problems now so he prepared for the tests he was facing those days.
Visits with my parents were physically and emotionally exhausting. I knew Robert had his had full with his own family and his business. He had the added responsibility of taking care of our parents' monthly business matters and making sure they were okay. He was their "go to" person. Mama got some relief from the day to day care of Daddy because Robert let Daddy come to "work" for him part-time well beyond the time that Daddy was capable of being helpful. I struggled with sharing with Robert needs that I observed during these visits because I knew I was the child who lived away and didn't know all that was going on day to day. I did not want to be perceived as the child who breezed in and "had all the answers". That is not to say that family ever gave me cause to think they viewed me that way. I knew I didn't have all the answers. But consecutive 24 hour days of living with my parents several times a year revealed needs that could not be observed by phone calls and "pop-in" visits. Daddy was a master at covering his condition for short periods of time.
©2015 Charlotte Bowles Baker
There's more to this story which will be covered in another blog.
Recently several people have posted on Lewy Body Dementia (LBD) Facebook Pages about "runny nose" in LBD. I had noticed that most every time I ate, my nose would start running. Since I would be visiting Mayo Rochester soon, I had not done any research.
With a rash of posts on Facebook, I decided to do some research. I turned to the Lewy Body Dementia Association website for answers. On their website, I found the following, " drooling and runny nose may be present". I attempted to quickly find other other information but was unable to find it.
This will be something that I will discuss with my physicians at Mayo on my first visit. If I am able to find additional information from them, I will write another blog on this subject.
BE LBD STRONG!
© 2015 Robert Bowles
Recently, I have experienced times of over-powering drowsiness and struggle to keep my eyes open. My eyelids will be swollen and overall, I feel terrible. I have always been ADHD and a workaholic. Often, I would work as much as 60 to 100 hours a week. Now, I have to live with the ill effects of doing this coupled with a diagnosis of dementia with Lewy bodies (LBD)
Most days, I spend many hours a day on my website and social media learning from others and sharing information about dementia and my personal journey. Often, I will push myself beyond reasonable limits. Previously, I would attempt to overcome with mental strength. Now, I have finally realized that I must stop and rest to recover.
I will stop and have a talk with "Lewy" and tell him that it is time for him to go on vacation. Then, I will take a nap. After I wake up, I am ready to start again. Unfortunately, I am having to remind "Lewy" more frequently that he needs to take more vacations.
Yesterday was one such day of overpowering drowsiness and today is truly a blessing of having fun with my wife and spending time in advocacy too.
Be LBD Strong!
©2015 Robert Bowles
I feel this quote can be applied to dementia and if followed can have a huge impact on the quality of life that we have. I know for me, mornings are very difficult. I never know from one day to the next how I will sleep. Sometimes, I get six to eight hours of sleep and other times, I only get two to four hours of sleep. Mose likely, this is due to the REM sleep disorder seen in LBD. Throw in the osteoarthritis in my fingers, the degenerative arthritis in my knees and the degenerative disc disease in my cervical and lower back often makes moving in the morning very difficult. Throw in the balance issues from dementia with Lewy bodies (LBD) and sometimes it seems as if it would be better to stay in bed.
Life is a balancing act. We must take the hand that we are dealt and make the most of it. On those days mentioned above, I may get off to a slow start; however, I will attempt to quickly recover and move on with making the day the best that I can. I immediately think of ways to overcome the battles that I might have with LBD including the Parkinsonism, and other health issues. Doing this allows me to transcend these health issues and focus on being the best that I can be for that day. I can only do that by getting outside of myself.
This enables me to maintain a positive attitude that is essential for living with dementia well. I have found that in doing this, opportunities open that I had never anticipated. There are always people living with dementia or other chronic and terminal illnesses that can use a kind word or a listening ear. I do not drive anymore; but, I can call elderly or sick people and check on them.
I suggest that giving back to others is a foundation for living life to the fullest.
Be LBD Strong!
©2015 Robert Bowles
Robert Bowles, Jr.