No, I am not getting into the legalities and possible politics of this. For me, the National Security involved me.
I used this title because I recently had a nightmare with dream enactment and auditory hallucination. This was by far the worse psychiatric symptom that I had experienced since being diagnosed with dementia with Lewy bodies almost 4 years ago.
The nightmare began with someone taking my iPhone away from me. I could hear people in the background talking about what they intended to do. I was hearing them say they had already taken my medical records and now, they would take my financial records.
Still asleep, I was feeling myself becoming anxious, frustrated, and angry as I wanted to keep them from stealing my information. I wanted this to stop. The anger was so great that I did not know what to do.
I finally came out of the nightmare and woke up. When I woke up, my right fist was pounding my left palm as if I was attempting to destroy my iPhone.
With previous hallucinations, I have been able to recover quickly. This was not the case with what happened that night. The emotional toll that ensued was overwhelming. I experienced difficulty in letting go of the situation. All of this distress lasted for one and one-half days.
The person living with dementia with Lewy bodies understands full well the emotional distresses that is caused with events such as this. It is very difficult to describe to a loved one.....the emotional pain.....the fear.....will it ever stop. Those are the questions there are no answers.
Be LBD Strong!
© 2016 Robert Bowles
Having an internist who has a good understanding of Lewy Body Disease (LBD) is truly a gift to me. Last week I visited him. He never rushes me and is patient if I am slow responding. Actually, he spent one hour with me. My blog today will cover some things that will or might be seen in LBD.
During the visit, we talked about the changes in focus and attention. Over the past 14 months, I have continued with gastrointestinal (GI) issues. These issues have mainly been fluctuations with constipation and diarrhea. I have seen a gastroenterologist for multiple visits and by physicians at Mayo Clinic in Minnesota during this time. No answers have been found. I was advised that I should see a physical therapist that specializes in pelvic floor. I have seen one that has a PhD in this area of expertise. Last September, I started seeing her. At my first visit, she told me that my problem was not pelvic floor. She suggested that it was likely scar tissue from the colon surgeries that I had in late 2013 and early 2014.
The process started of her stretching the scar tissue and continuing one layer at a time. There was no pain in it, but it did mean that we would drive every week to her office which is about 50 miles away from home. There have been ups and downs during this process. I will think that I am doing better only to be disappointed by regressing.
At my appointment with the internist this week, he reached the conclusion that it was likely autonomic dysfunction (automatic things that happen in the body). Having been a pharmacist, I know that I will likely continue dealing with this situation, with some days good, some not so good days and some days bad.
When I face these situations, I have a choice.....to accept or focus on it. For me, accepting my situation and keeping a positive attitude has been a huge part of my journey. Yes, I do get sad, frustrated and sometimes angry at the things that are difficult to deal with. However, I have found that my acceptance and having a positive attitude enables me to move ahead with less frustration. If I choose to harbor those feelings, I am only hurting myself and my family. I would continue to be angry, agitated and tough to live with.
I fully realize that I will likely reach a point when I will not longer have control of those feelings and emotions. However, until that time, I choose to stay positive and find ways to compensate for the changes in my life.
© Robert Bowles 2016
Timothy Hudson commented on one of blogs recently. His comments prompted me to do some research so that I had a better understanding on freezing in Parkinson's. Many of my Parkinsonism symptoms were present at the time of diagnosis in 2012, but the freezing was not one of them. My periodic freezing started in early 2015. I am both inquisitive and scientific minded so I dug in to see what information might be available to help each of us to have better understanding and what might be ways to deal with it.
Approximately one in three people with Parkinson's will fall each year. While not everyone with Parkinson's will freeze. Freezing is an involuntary response that keeps the person from moving. It is a temporary situation. The cause of the freezing is not known. One of the main concerns is for the person to fall when the freezing occurs. Trying to force someone to move could cause them to lose their balance.
The two videos below were on YouTube, and I feel they give good insights for both the person experiencing the freeze and for care partners.
© 2016 Robert Bowles
Let's consider the impact of Parkinsonism on my journey. I chose to share this symptom today because it is the one that has troubled me the most for the past month (other than the GI issues that have been going on for 14 months).
We know there are two types of Lewy Body Disease (LBD)..... (1) Dementia with Lewy Bodies (DLB) (memory issues occur within the first year of motor symptoms and (2) Parkinson's Disease Dementia (PDD) (memory issues occur more than a year from the start of motor symptoms. Parkinsonism is a group of nervous disorders similar to Parkinson's Disease. Some of these are rigidity, tremor and impaired motor control.
In my journey these symptoms have shown a wide variance in the severity of them. At the time of diagnosis in June 2012, I displayed hand tremors (usually one hand would be more significant than the other), stooped posture, shuffled gait, rigidity and a low voice which is often seen in Parkinson's.
These symptoms have been from mild to very problematic. For me, it is unpredictable as the path they will take. Earlier this year, I went into the grocery store with my wife. I walked into the store with a normal gait. As soon as I put both hands on the cart, neither foot would come off the floor. This continued the entire time in the store and into the parking lot. After sliding my feet into the house, I stretched out in the recliner. Several hours later, I awoke and was walking normal again.
Over the past month, my Parkinsonism issues have increased. I have especially noticed my hand tremors have been much worse. This morning, I walked into my office so that I could begin writing my blog for today. As I put my fingers on the keyboard, they would not rest on the keys. They were bouncing left to right and up and down.
At this point, I had two choices. (1) I could continue to attempt to write the blog and likely become very agitated and frustrated or (2) I could return to the den and relax.....not really thinking about anything. When faced with situations like this, I always choose to walk away. I know that if I don't walk away, I will likely become something that I do not want to be.
I have found by removing myself from the situation, I can maintain my inner peace that is so important to me. Adapting and finding alternatives is important for someone with dementia. I may not be able to do things the same way, but I can do it differently and accomplish the same results. Always stay away from beating yourself up.
Be LBD Strong!!
© 2016 Robert Bowles
Today, I am going to digress from my original plans for this series of blogs. Tomorrow, I will start back with my original plans.
I realize that I am an anomaly. Six months after diagnosis, I would see friends in town. I had lost a lot of weight and had been sleeping 18 to 20 hours a day. They would come up to me and complement the way I looked. They would tell me they thought they would have already gone to my funeral. Jokingly, I would tell them I understood and that I had called the funeral home every day to make sure that I was not there.
Yesterday, I wrote about my 18 month path to diagnosis. While that period of time was very difficult, I began doing better about 6 months after diagnosis. I had read everything that I could find about LBD and the path of the disease. My thoughts were that I was not a statistic. I am a human being. The statistics meant nothing to me, and I told my wife that I would defy them. I began to embrace, "there is life beyond diagnosis". I decided to rely on my faith and live life to the fullest. Tragically, I have lost too many friends that were diagnosed after me. I struggle with that. It breaks my heart every time that I hear of anther friend that has died.
It has been almost 4 years since my diagnosis. During this time, I have remained in the mild cognitive impairment stage. Over the past two years, the hallucinations, dream enactment, nightmares, Parkinson's symptoms, blood pressure and heart rate issues from autonomic dysfunction and other symptoms have not been as problematic. Over the past 2 years, these symptoms have randomly appeared and be just as difficult to deal with as they were initially. This is why I tell people than I am an anomaly. My original diagnosis in June 2012 in Atlanta was dementia with Lewy bodies with mild cognitive impairment. This has been confirmed by Mayo Clinic in Minnesota.
I feel that my "anomaly" gives me a window of opportunity to share my journey and hopefully help others. During my journey, I have followed the path of an acronym ASAP. I have changed the meaning of ASAP and applied this to my life. A = accept the diagnosis, S = stay social....try to increase socialization, A = have a positive attitude and P = find my new purpose after diagnosis. Let's start LIVING!!!
Be LBD Strong!!
© 2016 Robert Bowles
My path to diagnosis involved visiting 8 physicians over 18 months.
Mid-2010: My body began telling me that something was not the same. There were no clear symptoms, and physician visits and lab tests had yielded no answers. I began going home from my pharmacy in the middle of the day and sleeping for 2 to 3 hours. After resting, I returned to the pharmacy and finished the day. The previous year, I had been President of the Georgia Pharmacy Association and traveled across the United States to meetings for approximately 120 days. During the next 3 months, I thought that maybe my problems were just fatigue/exhaustion. There were no memory issues at this time.
August 2010: My situation had not changed, and there was still no answers. My wife has Lupus and Rheumatoid Arthritis. I became fearful that something might happen to me, and she would be left with a pharmacy to dispose of. Reluctantly, I begin negotiating the sale of my pharmacy to a national chain. The sale was completed in December 2010.
February 2011: Depression started. I speculated that this was due to selling the pharmacy that I had owned for 38 years. I had been fortunate to have a close relationship with my patients and that no longer existed. I began seeing a counselor.
June 2011: At the request of my counselor, I saw a psychiatrist for him to evaluate the antidepressant that I was taking. He agreed with the medication that I was taking and added another medication with the instructions to take one daily for 7 days and then increase to one twice a day.
July 2011: The eleventh day of treatment with the new medication, I went catatonic. Walking in the door of my family practice doctors, the receptionist told me not to stop but to go to the back of the office. The nurse told me immediately to get into an exam room. Within minutes, two doctors were in the room with me. They started the process of tapering me off the new medication. (Being a pharmacist and understanding the medication, I likely would have never agreed to take the medication if I had known I had LBD.
October 2011: I began having chest pain and my blood pressure and heart rate started decreasing. Fifteen minutes after being admitted to the hospital, I was transferred by ambulance to an out of town hospital to be seen by an intervention cardiologist and an electrical cardiologist. The intervention cardiologist quickly determined that my stent was open and there was no blockages. The electrical cardiologist determined that I had neurocardiogenic syncope (when I would stand up, my blood pressure and rate was dropping to significant low levels).
Over the next 7 months, the electrical cardiologist treated me, reaching a point of me taking 7 tablets a day to raise my blood pressure and 2 a day to lower it. The episodes of passing out and falling to the floor had increased even to the point of injuring myself.
April 2012: The electrical cardiologist referred me to a general neurologist. The diagnosis at my first visit was Parkinson's and mild cognitive impairment. I was started on medication for Parkinson's.
May 2012: Return visit to general neurologist. At this visit, I was told that I did not have Parkinson's but Parkinson-ism and to stop the Parkinson medication. Also, I was told that I likely had Frontal Temporal Dementia. The physician ended this visit by telling me that he was referring me to Emory Cognitive and Memory Clinic in Atlanta where they would be able to accurately diagnosis the situation.
June 2012: I was continuing to pass out and fall. The initial information that I received prior to going to Emory was that I would receive my diagnosis on the second visit. After a 3 to 4 hour visit for physical exam, neuropsychiatric testing and labs, I was told that everything taking place led to dementia with Lewy bodies with mild cognitive impairment. My blood pressure was the main concern at this time for the cognitive neurologist......"we have to get you blood pressure under control". He prescribed Jobst Waist High support garments. Over the next 2 months, I had stopped passing out and falling and the cognitive neurologist began to taper and ultimately discontinue all of the medications that had been given to me to raise my blood pressure. Presently, I only take one capsule a day to lower my blood pressure.
Just prior to diagnosis and for several months after diagnosis, I was sleeping 18 to 20 hours a day. Judy would wake me up to tell me that I needed to eat, brush my teeth or go to the bathroom. As the blood pressure returned to near normal levels, the amount of time that I was sleeping decreased.
There was relief in receiving a diagnosis; but, now I had to begin processing all that had happened during the 18 months.
Robert Bowles, Jr.