It is certainly a lapse in the signals from the brain and there is no question that the brain is the culprit, not the legs. Of course, Sinemet acts on the brain. But aside from medications [or no medications] I can often 'coach' my husband to move, sometimes one step at a time. Some people hum a march, creating a walk-rhythm to get them started when they are stuck in mid-stride. I think I have posted before that I tell my husband to tell his brain to let his legs walk. This often works best, as he is always convinced there is something wrong with his legs. I tell him 'Your legs are strong', which they are.

Hi Leone,
No, I do not feel that the reduction in sinemet contributed to my husbands fall in any way. He had been on a consistent dose for at least six months or more prior to the fall. His fall was simply a freak accident of getting tripped up with his pants.

I suppose his posture may have been slightly more stooped and he was probably not able to walk quite as far but not significantly. We were working very closely with a physical therapist as we tweaked his med dosage. So we would take away one med dose at a time for about a week and the PT would monitor any changes as we went along.

I'm an RN and I'm guilty of tweaking meds on my own, which I would not recommend. However, it worked for us and I did have a running dialogue with his Doctors as I went along, so I was not totally independent.

He was very in tune to his symptoms and "what kind of a day" he was having. His immobility was in direct correlation with his more confused days. H e was able to tell me in the morning if it was a "good" day. He knew that there were hallucinations, he could describe them at length to me, but up until about 1 week prior to his death, he was aware that they were not real and that no one else were able to see them.

However, when he was on a higher dosage of sinemet, he appeared dazed and couldn't put simple sentences together,which was extremely frustrating to him!

I don't advocate changing meds on your own without consulting a Dr.
I wish you much luck and send prayers your way... It's a very difficult road. My only suggestion is to try to understand what you think he is trying to tell you. We were very much like a Mom and toddler, I often could understand what he was saying with ease while others had to really concentrate to piece it together.

Sandilee

Sandilee,
Good to see you posting. Hope all is well!
Robin

Leone,
In response to our response as caregivers being calm....

A very dear friend to me helped me about a year ago. He simply said..."We as human beings have only our senses to rely on for direction and reality. When our very own senses are deceiving us we will naturally look to whomever we most trust to step in and be our compass for reality."...

This simple statement helped me to put my husbands experience into perspective and stop expecting quite so much... It is far from easy and you won't be calm and easy going a lot of the time. As long as you and he know you are doing your best and your best is given in love he will feel that love even when he doesn't understand it.

Hang tough and be strong

Leone - can you get out for a massage? That helps me SO much when I can do that once in a while. And many places are offering reduced rates these days, which helps a lot! Lynn

You do have your hands full Leone! Isn't it amazing the things our LOs can come up with? Hope you get those papers found and signed!!! LOL

Lynn

Was the fainting and seeing colors considered a hallucination? Sounds like a drastic drop in BP. Such OH (orthostatic hypotension) can occur in PD and related disorders. (When it follows a meal, it's called "post-prandial hypotension.") Medication can certainly exascerbate OH symptoms.

Did the MD take the BP after transitioning from lying to sitting, and after transitioning from sitting to standing? That's the way to take someone's BP when there's a risk of OH. This type of autonomic dysfunction is one of the supporting symptoms of LBD.

Do you know why he questioned about migraines? My dad, sister, one of my kids and I all get migraines. Would that make a difference in a medication the dr. would prescribe? LYnn