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.