Who is Lewy?

Updated: May 18

Like my dad, many people that are diagnosed with Parkinson's have never heard of Lewy Body Dementia. After Dad's diagnosis, we thought we knew Parkinson's--after all, my grandmother also had it. But in 2015, when dad started demonstrating mild cognitive impairment, we soon learned that his Parkinson's experience wasn't anything like what my grandmother had experienced.

We would soon learn that dad was diagnosed with Parkinson's with Dementia (PDD). As I started researching, I constantly kept running up against this condition called Lewy Body Dementia (LBD). As I read the symptoms associated with LBD, they seemed exactly like what my dad was experiencing.

What most people don't know is that PDD and LBD are one in the same. The conditions are both caused by the presence of Lewy Body Cells that impact the brain. Unfortunately, there is no way of knowing whether these Lewy Body Cells are in your brain or not because today's technology and scans can't pick them up. The only way we can know for sure that they exist is a post-death autopsy of the brain.

The treatment path is also very similar. Because there isn't a cure for either PDD or LBD, our medical team treats the symptoms in order of the greatest aggravation - generally utilizing the same drug path for both PDD and LBD.

So, which diagnosis do you get? Those who exhibit Parkinsonian symptoms first - the motor symptoms such as tremor, gait and balance issues, as well as rigidity generally get a Parkinson's diagnosis and start the drug regimen for the motor symptoms. As mild cognitive impairment occurs - which only happens in 1 of 7 cases or in the very advanced stages of the disease, additional medications to support those symptoms are added to the treatment plan.

Those diagnosed with LBD are first presented with the mild cognitive impairment that resembles REM sleep behaviors and disturbances, trouble connecting words with thoughts, hallucinations, delusions and sometimes even Capgras or Imposter Syndromes. In fact, many LBD patients are first diagnosed with either Alzheimer's Disease or go down a psychosis path due to behavior and personality changes. Many times, it is not until the Parkinsonian and motor symptoms are added, does the patient then get a Lewy Body Dementia Diagnosis.

In Chapter 3 of Sunsets and Silver Linings - I share my dad's journey of adding the dementia diagnosis to Parkinson's. I soon learned that there was a world or resources available through the Lewy Body Resource Center and the Lewy Body Disease Association that were very helpful to some of the new symptoms we now faced. I also give tips and things to look out for with behaviors to know when it is time to see the Neurologist or Movement Disorder Specialist with these newfound symptoms.

In some ways, I feel we were fortunate that dad exhibited the Parkinson's symptoms first. It was clear based on the motor issues what medications he needed. That isn't often the case with those who have LBD. Because those symptoms are shared amongst other conditions like Alzheimer's and Schizophrenia, a correct diagnosis is often missed. This means that treatment options are different and can sometimes even be misguided to cause more harm than good if they are going down a path other than LBD.

As caregivers, we must be our loved one's biggest advocates. If you notice the medications your loved one is prescribed causes significant changes, consult with your Neurologist immediately. Without an official tool to help Neurologists appropriately diagnose LBD, it is a guessing game. There are many things to try to find the right fit. Working with a Movement Disorders Specialist can be a gamechanger for those impacted by LBD.

If your loved one has been diagnosed with Alzheimer's and starts exhibiting motor symptoms as well, it is time to get a Movement Disorders Specialist to ensure they are on the best treatment path. And remember, it is impossible for a General Practitioner, Internist or Primary Care Physician to understand the complexities of these conditions and prescribe the correct medications. Always push for the specialist referral.

If you would like to learn more about our journey to the diagnosis of Dementia after the Parkinson's Diagnosis, you can read more about it in Chapter 3 of Sunsets and Silver Linings. The link for purchasing your copy of the book is below.

A Note from the Author: While this book is available on Amazon and Barnes and Noble in hardback, paperback and e-reader formats, I encourage you to make your purchase from the link above from my publisher, Xulon Press. Amazon and Barnes and Noble both take more than 60% of the proceeds from the sale of any book. By purchasing directly from the publisher for the same price, you are able to help others more with PD and LBD with a higher contribution from royalties. I'm sure many other authors would also appreciate this approach as well.

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