Oddly Lewy Body.

Lewy Body Dementia can be a confusing and unpredictable illness by any measure. Sometimes, when I tell people that Dad has LBD, which is Parkinson’s-related, they are surprised. They ask me if Dad has had Parkinson’s for a long time, and what type of treatment he had. They are even more surprised when I tell them that Dad didn’t have Parkinson’s before the dementia, but that he has it now.

Dad’s dementia always presented in such odd ways; it was hard to predict what he would do or how it would progress, and hard to judge exactly what he needed since he could be quite lucid in some ways. We had to put him into a dementia wing early because he was running away from caregivers – but it was heartbreaking how aware he was of how different he was from most of the muttering, slumping residents in there.

I know now that most doctors diagnose Alzheimer’s at any hint of cognitive problems, probably because it is the most well-known and covers most of the symptoms anyway. Unfortunately, the MMSE (Mini Mental State Exam), given to sufferers only shows cognitive issues, not what is causing them. It became evident that Dad had something more like LBD when he became aggressive. Now, he is experiencing the physical symptoms that accompany his type of Lewy body - DLB.

“Every person with LBD is different and will manifest different degrees of the following symptoms. Some will show no signs of certain features, especially in the early stages of the disease. Symptoms may fluctuate as often as moment-to-moment, hour-to-hour or day-to-day. NOTE: Some patients meet the criteria for LBD yet score in the normal range of some cognitive assessment tools. The Mini-Mental State Examination (MMSE), for example, cannot be relied upon to distinguish LBD from other common syndromes.

LBD is an umbrella term for two related clinical diagnoses, dementia with Lewy bodies and Parkinson's disease dementia. The latest clinical diagnostic criteria for dementia with Lewy bodies (DLB) categorizes symptoms into three types, listed below.  A diagnosis of Parkinsons' disease dementia (PDD) requires a well established diagnosis of Parkinson's disease that later progresses into dementia, along with very similar features to DLB.  A rather arbirary time cutoff was established to differentiate between DLB and PDD.  People whose dementia occurs before or within 1 year of Parkinson's symptoms are diagnosed with DLB.  People who have an existing diagnosis of Parkinson's for more than a year and later develop dementia are diagnosed with PDD.” www.lbda.org

It is hard to see the slight tremor that rocks Dad’s body now, as well as the minor muscle contracture in his arms. It is difficult to see him twitch violently every few minutes, especially when he is sleeping. The hardest of all is to watch my once long-legged, striding father, shuffle carefully along – brain unable to decipher whatever messages still come from his feet. I hope that these are the worst of the Parkinson’s symptoms we see and he doesn’t experience worse ones like dystonia and bradykinesia.

The main message I try to convey to caregivers is that LBD can show up in a lot of different ways, not just one. It is important to watch out for signs that your loved one is suffering something more than just Alzheimer’s. As I watch Dad sleeping, body vibrating gently, I wish for him no worse than this in terms of bodily discomfort. Hopefully, my wish will come true