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 A peek preview of unpublished research 
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: A peek preview of unpublished research
JeanneG wrote:
Have you ever discussed his running dreams with his doctor? Klonopin is effective for that in something like 90% of all RBD cases that are treated. Coy's been taking it for more than 30 years.
No, and I have no confidence in either of his doctors. It's too bad we don't live near Chapel Hill. Our little town is the home of John Travolta and he doesn't know anything either. :lol:

Dale has not done well with additional meds. We're finished experimenting. It might have made sense 30 years ago. I was not yet married to him.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Jan 19, 2011 11:13 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: A peek preview of unpublished research
Leone wrote:
Quote:
We're finished experimenting. It might have made sense 30 years ago.
I agree. It is too bad RBD was not more widely known 30 years ago. Many, many people (and their bed partners) could have been helped by the simple drug therapy. Coy's PCP did not recognize the symptoms. But Coy happened to hear about RBD on a radio program. He was very excited to hear of something that sounded just like his experiences. He asked the PCP if he would refer him to the clinic interviewed on that program. PCP agreed that the sleep clinic had an excellent reputation (back then treating sleep disorders was seen as something close to voodoo), he gave the referral, Coy bought new jammies and went in for a sleep evaluation, started taking Klonopin, and slept peacefully ever after, until Lewy came along and caused additional sleep problems.

That radio program made a huge, huge difference in our lives. I think we cannot underestimate the value of getting the word out about LDB, too. Knowledge is powerful.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Jan 19, 2011 11:31 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: A peek preview of unpublished research
It occurs to me that Dale must still want to act out his dreams. Last week, he tried to get out of bed about 2 am and fell on the floor. As stiff and uncoordinated as he is, he can still make that huge effort when he thinks we are in danger. He thought we were involved in a flood. He told me there was water everywhere. (Even his catheter was still connected... so there was no liquid anywhere. :lol: )

I also haven't thought much about his 'riding the bicycle' during the night recently. I'm not sure he still does it. It used to be every night and I got really annoyed. Little did I know what the future held.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Jan 19, 2011 11:47 am
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