The Michael J. Fox Foundation does excellent work with education and outreach, and some aspects of their work is directly applicable to Lewy Body Dementia.

Many people with Lewy Body Dementia (LBD) experience tremors, stiffness and rigidity. These symptoms are typically considered to be Parkinsonism elements, which means they are the same as those in Parkinson’s Disease (PD). This would appear to be logical, since the root cause of both LBD and PD is believed to be caused by Lewy Bodies, misfolded alpha-synuclein proteins, in the brain.

Carbidopa-Levodopa is the most commonly prescribed drug in Parkinson’s, also used to lessen Parkinsonism symptoms for many people with LBD. Approved over 50 years ago, it is still considered the most effective drug for motor symptoms in PD, although there are alternatives now available. It is a key component in Sinemet, Rytary, and the Duopa pump.

This is a two-part drug: the Levodopa part gets converted into Dopamine in the brain, which controls normal movement and which is deficient in PD (and for many with LBD), while the Carbidopa helps get the active part of the drug into the brain, and is intended to lessen other side effects including nausea and blood pressure issues.

The short video covers several important topics, including those below.

• Levodopa works best to control all tremor, slowness and stiffness. But doesn’t help postural changes (like the Lewy Lean), balance, or freezing of motion and gait issues, nor does it help mood or memory issues.
• It does not lose its effectiveness, but the condition gets worse progressively,
• “Off-time” can also diminish the perceived effectiveness of the drug, which can happen as its effects wear off and the next does is close to being required. Off-times also occur spontaneously, and unpredictably, but this does not mean the drug has lost its effectiveness.

Always consult with your medical team to see what’s right for you. This is in no way an endorsement of any medication, and the information provided is intended only to be for general knowledge.