We are in our eighth year of living with Lewy. Hubby is still at home, and highly functional, all things considered.

Initially he fell down frequently -- often more than once a day. He takes a blood thinner and even slight bumps cause bruises -- he was one massive black-and-blue mark. I sometimes needed help getting him up off the floor. He had a walker but in his case it was utterly useless. When he fell it would go tumbling out from under him. After about 6 months his primary care provider authorized a wheel chair. I expected resistance because hubby resisted using the walker (who could blame him) but it turned out he liked the wheelchair. Finally he could scoot around the house without fear of falling. This was good for his spirits.

I began to observe closely the nature of his falls. It did not appear that he lost his balance or that his unsteady gait was to blame. Instead his legs and arms very suddenly refused to work. He couldn't stay upright and he couldn't grasp the walker. I described this to his behavioral neurologist who said it sounded like narcoleptic-type episodes, where his body suddenly fell asleep even though his mind was still awake. He prescribed a drug used for narcolepsy, Provigil.

Oh my goodness! This is our miracle drug! Instead of falling several times a day hubby now goes months without falling. The wheelchair is handy for outings that would require a lot of walking (museums, the fair, etc.), but because of stamina issues, not problems falling. He not only is back to walking, but he bowls with a senior league once a week!

I have had to appeal insurance decisions to deny coverage for this drug more than once, but have been successful, with the doctor's support.

I don't mean to suggest that this is the most common cause of falling among LBD patients, but it is definitely one possible cause, and it is a problem that can be addressed with medication. I'm not sure how widely known it is among doctors who don't specialize in treating LBD, so I think it worthwhile for caregivers to be aware of it.

Does anyone else have a LO on Provigil? Was your experience as dramatic as ours?

Isn't it totally amazing how different reactions can be to the same drug?

Of course, Provigil is a Boeve-favorite. I think it's his third-line treatment against hallucinations, and his first-line treatment against EDS (excessive daytime sleepiness). Few here have used it. If you are interested, you could do a search of past posts that use the term "Provigil" or "Nuvigil."

Robin, I don't know what Dr. Boeve's favorites are -- I only know what he prescribes for my husband. I can tell you that provigil is definitely a JeanneG favorite! Falling was a very serious problem for us pre-provigil, and it is not a problem now. Boeve and Coy's sleep disorder doctor consulted on this and it is actually the sleep doctor who prescribed it.

I think the explanation, as I understood it, was very interesting. Coy has been treated for RBD for many years. That is a condition in which characteristics of wakefulness invade sleep. The sleeper acts out his or her dreams, which shouldn't occur in normal sleep. The theory is that perhaps in LBD characteristics of sleep invade wakefulness. The lines between sleep and awake have been disrupted for many years. Perhaps the disruption has now taken a further twist. It certainly looked like Coy was falling asleep in the middle of taking a step, even though he continued to be awake.

I don't know exactly why it works. But it works extremely well for Coy, and has for several years. I'm sure it is not the right drug for everyone with LBD, but I would hate to have to give it up for Coy.

Leone, I don't think you missed seeing anything. Each case does indeed seem to follow its own course.

When new people join my local support group, they almost always ask how long/how fast the disease progresses. But within our own group experience we've seen LOs die after two to three years, and LOs still functioning after 7 or 8 years. Who can predict how long any given case is going to take or exactly which of the symptoms are going to predominate?

We have been very lucky (if you can call anyone with LBD lucky). That you have been less lucky is not in any way your fault or because you missed seeing something. I hope you take comfort in knowing you are doing the very best you can at an exceedingly difficult task.