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The Wrong Parkinson’s Diagnosis

Updated: Feb 9, 2023

Parkinson’s and Lewy Body Dementia (LBD) are related. LBD is the second most common type of progressive dementia after Alzheimer's disease, yet most people have never heard of it and many in the medical field do not know how to diagnose it properly and often give an incorrect diagnosis of Parkinson’s. An early, correct diagnosis of Lewy Body Dementia is important in order to understand this condition and help reduce symptoms. By doing so, a person with LBD can live a more fulfilling life.

The Parkinson’s and Lewy Body Dementia Connection

There are 3 types of Lewy Body Diseases: 1. Parkinson’s Disease 2. Dementia with Lewy Bodies

3. Parkinson’s Disease Dementia

Lewy Body Dementia includes both:

Dementia with Lewy Bodies and Parkinson’s Disease Dementia.

Parkinson’s symptoms are mainly physical – rigidity that causes difficulty to move and tremors

Dementia with Lewy Bodies' symptoms often include hallucinations, rigidity, confusion, memory loss and sleep difficulty

Parkinson’s Disease Dementia includes both of the above. To learn more: Read here

What Causes Lewy Body Diseases?

Lewy Body Diseases are caused by abnormal deposits of a protein in the brain called Lewy Bodies. Depending on where these clusters of protein develop in the brain, they will either cause Parkinson’s or Lewy Body Dementia or both. Research has not yet determined the cause of these protein deposits.

To learn more about the Lewy Body Proteins and the difference between Parkinson’s and Lewy Body Dementia read here:

The Importance of a Correct Lewy Body Dementia Diagnosis Receiving a correct diagnosis of Lewy Body Dementia is extremely important. People who are diagnosed early with Lewy Body Dementia can control their symptoms through medications and adaptation.

The diagnosis of Parkinson’s is normally made if an individual first experiences movement disorder, while a diagnosis of Lewy Body Dementia is made if the individual first has cognitive or memory change. Unfortunately often there is a misdiagnosis of Alzheimer’s or Parkinson’s instead of Lewy Body Dementia. There may also be a possibility that taking the meds for the incorrect diagnosis could have negative results.

One of the sadder stories of incorrect diagnosis was that of Robin Williams. Most thought that Williams committed suicide due to depression, but Williams did not know that he had Lewy Body Dementia. He was diagnosed with Parkinson’s. Williams suffered from cognitive changes. For someone who was known for his incredible fast thinking wit, the change must have been unbearable.

William’s family is bringing awareness to the public about Lewy Body Dementia. I highly recommend watching this very well-made documentary Robin’s Wish to understand Lewy Body Dementia more and what life was like for William’s. I must admit that I knew very little about Lewy Body Dementia until I viewed this documentary. It is really made well – not tear jerking – but educational and allows you a peek into the world of someone with this type of dementia. It’s also quite incredible that all those who worked with William’s in his final movie kept secret from the public the changes that were happening to him.

In the The Genius Life Podcast, Robin William’s son, Zak, discusses his father’s incorrect diagnosis and suggests that possibly the medications he received for Parkinson’s may have had a negative effect. At 011:00 on the podcast Zak William’s explains:

“Those drugs are not joke… they put you through it. There is a range of efficacy, but what I found was they are also really hard on mind and body… That was hard to see… “

At 000:12

“Sometimes some improvement sometimes didn’t help at all. It might have exacerbated the situation….That said the diagnosis was different than the disease… It could be a situation where you are talking stuff and experiencing the purely side effects of it.”

Learn More About Lewy Body Dementia I am indebted to and inspired by Curry Whisenhunt who shares his experience living with Lewy Body Dementia and has made it his life’s work to educate the public and help others living with this condition. I highly recommend following Curry and Linda’s Podcast: Lewy Body Roller Coaster. Linda is the caregiver of her husband who has Lewy Body Dementia.

The podcast is for both those living with Lewy Body Dementia and their families and caregivers. There is a wealth of information and resources. You can also join their Lewy Body Journey Facebook Group Lewy Body Dementia is not at all similar to Alzheimer’s type dementia and does not cause continued cognitive decline. In Lewy Body Dementia it is more ups and downs. Some days are better than others. Correct medications and understanding this condition can allow someone with Lewy Body Dementia to live a very fulfilling life. -- Follow us on Linkedin Youtube Facebook Instagram

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