Support Groups

I haven’t been able to write in this blog or record my Podcast for more than four weeks. I am an LBD patient and I have experienced the loss of a child, a loss worse than losing my own life. I got some help, but not in a way you would probably guess. I became part of a support group for grieving adults that have lost a child. It has helped a lot, but the good news is really that there are some awesome support groups for Lewy Body Dementia patients and, as importantly, they give support to caregivers and they are most often the closest loved ones to the patient.

My wife and I belong to two Lewy Body Support Groups. They are both on Facebook. One is called ‘Lewy Body Support Group’ and the other is called ‘Our Journey with Lewy Body Dementia.’ We can tell you they are both essential to our ability to cope. Both give us more information than a doctor visit! The group gives us one thing doctors can’t, first-hand experiences and immediate advice.

Our Journey with Lewy Body Dementia also offers Podcasts and weekly Zoom meetings. The podcasts are available on demand and the Zoom meetings happen every Wednesday afternoon. They are a chance to meet and share stories and questions of your own and many others.

There are a couple of blogs that are very informative, especially for caregivers. One that I follow very closely can be found at Dementia Science – Explains the science behind dementia. The URL is and it is written by Michael Hornberger. He is the Professor of Applied Dementia Research at the Norwich Medical School, University of East Anglia, Norwich, United Kingdom. His blog is laid out so a person can see all of the subjects right on the first page. They are clear and concise with the content being well written.

Another blog I enjoy following is Dementia, Caregiving and Life in General. It is what it says it is. Both blogs can be emailed to you as they are published. Every article might not be for you, but there are a variety of subjects and, like the support groups, they are things that interest you. Many subjects we don’t know and can be grateful they were brought up. The best ones are those that we have experiences with and can help someone else.

Robin Williams Case Study

You may have never heard about the fact that Robin Williams had a debilitating brain disease called Lewy Body Dementia. It is the second most common form of dementia in the United States and a vast majority of people never heard of it. The reason I mention that Robin Williams suffered from it is that his family never knew he had it until his autopsy. He had all the symptoms, and his story is very well explained in a documentary called Robin’s Wish. It is available on Amazon Prime, YouTube, and other places.

One of the things that stands out to me as a Lewy Body sufferer is, he tried to hide his symptoms and never got help. So many find out they had Lewy Body Dementia (LBD) from the autopsy and then it is too late, partly because it does not present as Alzheimer’s Disease and partly because the symptoms build up slowly. I knew something was wrong for years and my doctors never discovered it until I went to Mayo Clinic in Rochester, Minnesota. It took about 25 minutes to get a diagnosis. After more than 10 years there was suddenly this ominous diagnosis. For Robin Williams, the embarrassment of his actions caused him to hide things caused by LBD. For most the doctors are not well enough trained to realize LBD as problems arise over time.

The symptoms are relatively simple. Some of them are visual hallucinations, fluctuations in our cognitive ability, reduced ability to pay attention, reduced alertness, slowing of movements, tremors, difficulty walking and Parkinsonism. LBD is close to Parkinson’s Disease and sometimes it is difficult for doctors to determine which disease a person has.

Another symptom gets a whole paragraph because many things can happen. REM sleep behavior disorder causing people to act out their dreams by yelling, flailing, punching bed partners and falling out of bed. For me, the dreams are so vivid they feel real. I have punched my wife many times during one dream in which I thought a pack of coyotes was attacking me. It was awful. Now we sleep with a long pillow between us for safety. I live with the fear it will happen again and it can become anxiety at times.

I called this Robin Williams Case Study because he never knew what was happening to him and many people never figure it out. Every case is different, and the symptoms vary. They happen slowly and may happen one symptom at a time. For me LBD has been developing for at least fifteen years and my neurologist said maybe up to 25 years. The reason I am telling everyone about this is simply that our awareness must be very keen.

Medication has given me a lot of my life back. I am functioning at a high level and maybe that can happen for you or a loved one. The diagnosis is difficult and sometimes a person with LBD will have to push hard to get a diagnosis, but it is well worth the effort. Our cognitive and physical lives can be positively affected if we can find out early in the disease. I am living proof. Robin Williams is also proof, but in a negative way.


We are a group of people that knows we are going to lose our memories and I realized that I’m losing the most basic ones. It happened so slowly I didn’t realize it.

My son died of Covid and the Celebration of Life was last Sunday. I was trying to recall some of times together and it was very difficult for me to remember things about what we had done. It was so hard on me because I do remember how much I loved him. I have his pictures on the wall and a table in the house, but I wonder if I would remember him without those.

The stress of not remembering before the event was so great it made my symptoms much worse than they had ever been. Walking straight became impossible. Words weren’t coming easily. Forgetting what I meant to say in the middle of a sentence became normal and my family became afraid I was having a stroke. They had never seen me like that.

Finally, the Celebration of Life had come. My family had been with me the night before and it helped me get ready. Once I went in the door there were memories galore! Not only were there a bunch of picture memories, but many of his old friends were there. They had so many stories and experiences I was grateful for their presence and I remembered all of them. I remembered their stories too, so it was a tremendous celebration.

The moral of the story for me was that stress and anxiety made me so much worse. In all the education pieces I’ve read so that did not surprise me. The surprise is the depth of my memory loss and my levels of stress and anxiety.

Here I am having taken a week off from everything and life is getting back to normal, or as normal as it can get.

I am a helper by nature. I became a Christian Counselor later in life, but it helps me to help people. To try understanding, listening and sometimes simply being there for others helps me. Taking an interest and acting on it is a fine medicine for me at my stage of this crappy disease. I imagine the same is true for caretakers, but mostly if it’s a chance to get away from a situation will it help….a lot.

I will do this as long as I can. It would be nice to hear from my fellow Lewies and caretakers. I will be happy to try helping and if I can’t I have gathered enough resources to help. Please feel free to email me at It could be good for both of us.

Hard to get the Diagnosis

I struggled for years with mental and physical issues. I was hospitalized three times for depression because my actions didn’t match who I wanted to be and the stress was too much to bear. Even though I didn’t remember some of the things I did, doctors didn’t believe me. Sound familiar?

During the process of trying to get help I was diagnosed with many different mental issues. I was given eight different medications for depression, one of which worked for depression. The base problem was still there and I went to great lengths to find out the big picture.

I had brain MRI’s, neuropsych testing, counseling, psychiatry, and regular doctors. My physical symptoms were stumbling, right knee pain, right knee giving out, constipation that required hospitalization and daily medication to be able to go, incontinence, daydreams, dreams causing me to act out at night, seeing things and others. My family medicine doctor did tests and they found nothing on the brain scan.

After four or more years of worsening symptoms, my wife made an appointment at the University of Minnesota clinic where we saw a neurologist. He ordered the brain MRI and again I went through neuropsych testing. The MRI was read as showing nothing and neuropsych doctor concluded I was seeking attention. We had one more meeting with that neurologist and he was hesitant to tell us the results, especially the thought of thee whole thing being me seeking attention. In that discussion I told him we had paid for tests and treatment out of pocket. After learning that our neurologist advised seeking another opinion at the Mayo Clinic in Rochester, Minnesota. So we did.

We headed to the appointment and were called into an exam room. The doctor came in, asked questions, watched me walk and in 25 minutes or less diagnosed me with Lewy Body Disease and Dementia. After many years of growing symptoms and doctor visits we got the diagnosis in less than 25 minutes. He said this may have been developing for 30 years! Why couldn’t anyone else see this? Did they care enough?

So now this neurologist had to prove it. Back to the MRI machine and a sleep study and PET scan that neurologist saw everything. There was the proof in every test. On top of that he saw two previous head traumas. Those were from severe concussions in high school sports, the only head trauma I had in my whole life.

Then worse news came. He said I had three months to three years to live and I should get my affairs in order right away. He seemed to think it would be sooner rather than later. We wanted another opinion!

We saw a different neurologist at Mayo. While she agreed I had the disease, she disagreed with the estimates of my life span. Not only that she told us about a drug called Donepezil, but we found out it was a drug that was developed to treat Alzheimer’s Disease but failed to work. They tried it for Lewy Body and it worked for some people. We agreed to try it and it changed my life dramatically, at least mentally.

So after a long battle with the medical field, we had our treatment and a medication that worked, at least for now.

I’m interested in how it was for everyone else who had symptoms. How long did it take to get a diagnosis? Were you believed? Did tests show nothing at first? Please feel free to comment.

Robin’s Wish- An Absolute “Must See”

There are many things you don’t know about Robin Williams. Robin’s Wish is a documentary about the final years of Robin’s wife.

Robin Williams had one of the worst cases of Lewy Body Dementia ever seen. He never knew.

I highly recommend this one hour fifteen minute documentary if you have a friend or relative that has the Lewy Body diagnosis, or if you are a fan of Robin Williams. Find it on Youtube TV, Hulu, and Amazon Prime.

One note: Do not let children watch this and be careful about sharing it with someone already diagnosed with Lewy Body Dementia.

Stay Active With Lewy Body

Admittedly I am a relative newcomer to the world of dementia so I can only talk about my first hand experiences. I’d love to hear about yours so please post them in the blog.

One of the things that I do is communicate with friends. I use Facebook quite a bit. Texting and phone calls are great. Most recently I’ve connected with people I worked with more than twenty-four years ago and I remember them like yesterday. I don’t understand how those old memories seem so clear when I can’t walk into a room and remember what I went there for. Nevertheless, I do remember these friends fondly!

One of these friends retired from work yesterday and it was great to be able to say congratulations. Maybe it means more after all this time. Another friend I’ve connected with recently had a son while we were working together and he is now senior pastor of a church in western Wisconsin. A friend I’ve always been in some form of contact with bought a blueberry farm and just enjoyed her first year in business, during Covid no less. I’ve connected with friends I haven’t seen since 1975. I’ve found it to be very fun to get back in touch but I also know many with this disease cannot.

Challenging my brain with electronic games has been a real eye opener. My neurologist told me to challenge myself with these types of games so playing some of them wasn’t new to me. I measure my brain status with a particular sudoku puzzle that is on my phone. It has thousands of variations so we can’t memorize solutions. About five years ago my average time to solve these puzzles was around three minutes. Now my average time is around twelve minutes but I love the challenge. That puzzle is the first one I do every day and I get a feel for how the day is going to go from it. It’s good for the brain and I can enjoy it. It’s a personal favorite and I’m sure there are hundreds of favorites in the Lewy Body community.

As I write this I am in a hospital bed at Mayo Clinic taking infusion therapy for another neurological disease God blessed me with. This one is curable, but the main benefit for my wife and I is the travel. We came here every three weeks for three days and try to make it like a mini-vacation. Our hotel has spacious rooms and underground parking (we live in Minnesota so that is huge to us). Rochester has many things to do and spring, summer and fall there are always festivals.

So Lucky!

Yes, I realize that I still have this dreaded disease, but there are so many with this same thing and they are in much worse shape than I am. Do I feel lucky? No, but the point is they need support from wherever they can get it.

I have joined several support organizations, including Lewy Body Dementia Support Group. I am also a member of the Lewy Body Dementia Association. I see many sad stories and reports and I think there must be something we can do for them.

Yesterday at 3:15 there was a post from the wife of a Lewy patient. The post was to let us know that her husband died at 2:34. It struck me how important it was to let her support group know what happened. It wasn’t 45 minutes after her husband’s death. This support group means so much to so many I am proud to be a part of it. The group was part of her family.

So how can I help more? One of the ways is to stay active on the support groups, but the other thing I am going to do is a podcast so people can hear some encouragement. Maybe some of you could be a guest!

Stages of the Disease

Pictured are proteins attached to a b

Lewy Body Dementia is a slowly progressing disease. I’m told it affects at least a million people, or a little more than twice the number that have died from Covid-19 in the United States. Once symptoms are correctly diagnosed in Lewy Body, a person can last 5-8 years before death. At the appointment where I was given my diagnosis I was told I had three months to three years to live and that I should “get my affairs in order.” I had other things going on my neurologist didn’t realize. Lewy Body isn’t easy to diagnose because some of the symptoms are very Parkinson’s or Alzheimer’s Disease. Here are the general stages of progression for Lewy Body Dementia.

Early Stages

Hallucinations happen over and over for Lewy Body patients. We sometimes see things that aren’t there and at different times we may even be hearing and smelling things. Sleep disruptions happen because we act out dreams while we are sleeping.

The first thing my wife noticed was that I was running while I slept. Just like restless leg syndrome, the movement was uncontrollable and very animated. She said it was just like I was running.

Secondly, I kept seeing a black bear in our yard. Hallucinations are common. We live in the woods and did have a black bear in our yard once. We have pictures to prove it! I saw this bear over and over coming out of the section of woods that runs along our driveway. If I was outside I usually ran into the garage and closed the doors, but one time I got my phone out to take a picture and tried to chase it down. It was never there except for the first time.

Another incident that falls under the sleep disruption happened one night about a year ago. I was dreaming and being chased by a pack of coyotes and they caught up to me. They started biting me on the arms and legs. I decided to fight back. I started punching, kicking and yelling until my wife woke me up. I am not proud of this, but I was punching her and screaming at her.

There are other stories, but so far they all involve animals. For an instant I always wonder if they are real, but I haven’t hallucinated a lot since my neurologist started treating my with a drug called Donepezil. It has been a wonder for me.

Middle Stages

When I moved into the middle stages, movements like Parkinson’s Disease started to happen. I occasionally had rigid muscles, tremors, and difficulty moving generally. I had rigid muscles, tremors in the body, falls, and impaired speech. My thinking was impaired. I had memory loss, a short attention span, long periods of looking at nothing, confusion, and visual-spatial problems like in some patients that have Alzheimer’s Disease.

One thing that happened to me that doesn’t happen very much at all was many of my symptoms turned out to be from another neurological disease called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). Many of the symptoms I was having were attributed to CIDP and that was a relief. It means I am not as far along in Lewy Body as we thought I was. I have been treating two days every three weeks at Mayo Clinic for IVIG therapy. It’s administered like chemotherapy, but the drugs are not debilitating at all.

Later Stages

Depression. I already have periods of depression, but they are not as bad as I am told they it will be in the late stage. The slow deterioration of the functions of the Autonomic Nervous System will happen. A feeling of Apathy or loss of interest in things or lack of emotion will happen.

And so will end the story.

What is Lewy Body Dementia?

Alzheimer’s disease is a fatal form of dementia that takes the lives of approximately five million Americans every year. The Alzheimer’s Association predicts that by 2050 the number of deaths from Alzheimer’s will reach fourteen million annually.

The dementia most people have never heard of is Lewy Body Dementia. It is related to protein deposits on the nerve cells in the brain. It is the dementia that I have. It’s related to Parkinson’s disease and doctor’s have a hard time telling the difference between the two. The “clumps of protein” damage the brain cell neurons and it affects all of us in different ways. Because Lewy Body has symptoms so similar to Alzheimer’s, diagnosis often falls into the Alzheimer’s category. They find out in the autopsy it was actually Lewy Bodies that killed the patient. That’s why Lewy Body is often called the dementia we’ve never heard of.

Lewy Body causes cognitive fluctuations where my concentration comes and goes. Concentration is unpredictable along with levels of alertness and attention span. The changes can happen from day to day or even more than one change during a day.

Fluctuations can make it feel like I am improving for periods of time. Recently I felt like I was cured. It fooled me and right now I never know which it will be. The other thing is there are times when planning or reasoning is too hard for me and I am lucky to have a wife that knows me so well she fills in the gaps for me.

Most people think of memory loss when they hear the word dementia. In Lewy Body Dementia the memory loss comes late in the disease. There are days when we forget what day it is or what time it is. Also, and this happens to me, I forget where I am. That is not the memory loss I mentioned earlier. These kinds of losses come and go. In the end it’s total memory loss.

The disease can start 25-30 years before classic symptoms begin to show. Small things start to happen in personality, mood, judgment, and slowing coordination. The changes are very slow and the changes are small. For instance, I left a very good management job in 1997 because I convinced myself I was unhappy in the job. I still wonder why I did that! I went from that job in 1997 to homeless in 2009 but still felt like I was in control.

In between those times I hurt many people, stole things, and destroyed relationships. I spent seventeen years in the mental health system because what seemed real to me wasn’t the way things really were. That all happened before I decided things were worse than what I was being told. It was all part of the early disease growth period.

I can’t concentrate very long so my posts will be short and sweet. My next post will be about the symptoms that started early and how it’s progressed.

My Faith

Severe depression and a nervous breakdown led me to a place where I found myself a homeless person, albeit for a short time. I was living in St. Paul, MN moving from one shelter to another at night. One day in the spring I was hanging out with a group of guys discussing the events of the day. I got tired of it and went for a walk. I stopped at a corner and suddenly was in a state of euphoria! I loved my life again and felt like all the burdens of stress and relationships were gone. They really weren’t, but the Holy Spirit had engulfed my entire being. I got on a city bus to ride and think.

I got off the bus and was at the Union Gospel Mission in St. Paul. I went in the front door and immediately to my left there was a Bible Study happening! There was a man leading the study that was the head of a program called “The Discipleship Program.” He told me to come back tomorrow because he might have an opening in the program. I was ecstatic. The next day I was accepted into the program, thank God, and that was the start of a much deeper understanding of Christianity.

It might feel like I am changing subjects but bear with me. I started writing this six days ago and got two paragraphs in before grief overcame me. My son died of Covid-19 in October and his birthday was on March 9. I have been thinking about him a lot, as I’m sure you would be too. So there are two ways people probably think when something so cruel happens. I could have been angry with God or I could realize the truth of God’s nature. He was by my side anguishing with me and consoling me because He loves His creation unconditionally. My wife, a Godly woman, was right there helping me deal with it.

Faith is belief without proof. I have had way too many chances where I failed my family miserably. With my growth in understanding, the teachings of Christ I have become a person with growing empathy, care, understanding, and love for all things human. Jesus is the way, the truth, and the life.

Being diagnosed with Lewy Body Disease hasn’t shaken my faith one bit. In fact, He has called me to journal my experiences as I deal with this so that, if it helps one person, I have met my purpose that was inspired by Jesus Christ, my Lord and Savior.