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 Sleep Disorders as Possible First Symptoms of LBD 
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Nan, I agree that you put it well.
We are all trying to find answers to make our days better. And different things work for different folks. No one should feel guilty for what they have tried to do. This thing is just tough. We need to stick together in fighting the monster.
Take care,
PatS

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sat Dec 04, 2010 3:17 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3370
Location: Vermont
Post Re: Sleep Disorders as Possible First Symptoms of LBD
We had such an alphabet soup of possible diagnoses for my dad, and as several of you have said, in the longrun it doesn't really matter what the diagnosis is, the best that can be done for people with neurological disorders like LBD, etc. is that the symptoms be treated (if possible). Looking back on it, I spent a lot of time and grief trying to get my dad to other drs., trying to get a diagnosis, etc. It really didn't matter in the longrun, and it would have probably saved me a lot of grief had I just not spent so much energy trying to get a "real" diagnosis. But, that's hindsight...... At the time, you just don't know if there is something that can be done to help their symptoms. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Dec 04, 2010 7:06 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Sleep Disorders as Possible First Symptoms of LBD
As it is, we spend a lot of time going to medical appointments. There is at least one every week this month. Next week, the dentist and another blood test for the PCP. The 2nd week, the skin specialist for Dale's melanoma check up. The 3rd week, Dale's teeth will be cleaned. (He does that poorly so we have more frequent appointments than would be normal.) The 4th week is another appointment with his PCP. And... that's just December. He goes back to the neurologist in January. When do we have the time and energy to consult with other specialists?

We are doing the best we can. It isn't a question of money. It has more to do with quality of life .... what's left of it for us after 75.

Thanks for your post, Lynn. You have been a special daughter. Our children are all in California and we are in Florida. Not any of them will be going to medical appointments with us and taking notes. Your dad was lucky to have you.


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


Sat Dec 04, 2010 8:53 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3370
Location: Vermont
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Thanks so much Leone. Luckily, I had just retired when my dad started to decline, so I have not had the pressure of a job on top of everything else, and my youngest son had just started college. That makes a big difference in available time.
Before going to other drs., I'd ask myself "what am I expecting the outcome to be? Is this likely to improve the situation? Even if we do find that we have XYZ diagnosis, what will that really matter?" Maybe the best thing is to just enjoy life, if his symptoms are pretty well controlled now, and not spend so much time at drs. Of course the earlier you are in the disease, the more questions, the more possibilities you think you might have for treatment of the symptoms. It's hard, and everyone's situation can be very different. I wish you all luck at the upcoming appts. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Dec 04, 2010 9:37 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Sleep Disorders as Possible First Symptoms of LBD
PatS, your story has some parellels with ours, except we hit the jackpot on suitable doctors the first time around.

How long did John have a sleep disorder before dementia symptoms appeared? Did he get treatment for that prior to the probable LBD diagnosis?

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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


Thu Jan 20, 2011 7:18 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Jeanne, John has had sleep disorders since the 1980s.
He had apnea, then what I thought was restless leg, but now believe to be REM sleep disorder.
It started as a flutter in his feet, moved up his legs, and developed into full blown acting out of dreams over the years. We started sleeping in separate beds when he almost whacked me in the middle of a glorious sword fight he was having on some ship in dreamland.
:lol:
The very first symptom attacked by his (wonderful) neurologist was the sleep problem. We saw improvement with better rest for him.

He has never been able to tolerate the CPAP machine, probably because he knocks it off due to the other sleep disorder. Then he cannot put it back on properly due to his total lack of mechanical ability (haha, it has always been there).
After 20 years of trying, I insisted that he put it away so I could finally get some sleep myself. He depended on me to put him back together every time his mask slipped. I wish I had pictures to include of what he looked like at 2AM with a twisted bunch of straps on the top of his head. It would give some great comic relief.

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Thu Jan 20, 2011 7:40 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Jeanne,
The foot flutter started about 15 years before diagnosis, I think. It went untreated, because we did not think it was a big deal.
You can bet my children now know it is a very big deal. I have told them to aggressively treat ANY sleep problem asap and to be sure to get a long good night's sleep every night if possible.
I believe the connect btwn sleep problems and this disease is quite strong.
Take care,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Thu Jan 20, 2011 7:44 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Pat, Coy was diagnosed with RBD about 25 years prior to LBD onset. To us it was a big deal. He didn't "almost" hit me. I had bruises and so did he from throwing himself out of bed with his wild flailing. We actually went to a marriage counselor. How could this mild mannered, mellow guy who never raised his voice to me in the daytime be beating me up in his sleep? Was there some deep hidden issue? Well if there was the counselor sure couldn't find it. And then Coy heard a radio program about the local sleep center that was pioneering work on RBD. That was it! Overnight testing confirmed that that is what he had, and a simple little pill solved our "marriage" problems. 8) That sleep center (Minnesota Regional Sleep Disorders Center) is collaborating with the Mayo Clinic on extensive research on the links between RBD and LBD and/or PD. I find it fascinating.

That is how we came to an almost immediate probable diagnosis. The sleep center knew about these connections and when I called the doctor for something to help with the new sleep problems (which, like you, we desperately needed addressed first) he asked a few questions and gave me a diagnosis over the phone! (Based on treating Coy for a quarter of a century, of course.) He sent us off to the Mayo Clinic and we went through a more formal diagnostic procedure, but the conclusion was the same: LBD.

Coy is donating his brain to both of these organizations. (They promise to share. :lol: ) Research is critical for future generations.

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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


Thu Jan 20, 2011 8:04 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Sleep Disorders as Possible First Symptoms of LBD
JeanneG wrote:
How could this mild mannered, mellow guy who never raised his voice to me in the daytime be beating me up in his sleep?
This thread fascinates me because Dale is also mild mannered in every way. He has never raised his voice. His night time behavior was so out of character. And yes, it is a 'big deal,' Pat.

Most of our married life has been overseas so we did not go to a doctor for 'treatment.' We were in Germany for almost ten years (83-93) and then on Cyprus for almost five (93-97).

His first complaints here were dizziness and leg pains about five years ago. The dementia wasn't obvious until after the extreme delusional episodes in February 2009 but, looking back, I can see that there was some evidence in 2005.

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


Thu Jan 20, 2011 11:12 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Jeanne, what pill did they prescribe for your husband?

Dr. Kaufer used melatonin first for John, telling us there were other options. I think he chose it first because our primary doctor said there are no known bad side effects for it. ( And John was already on a lot of different meds by then.)
He worked with me via email to tweak it until we found the right dosage. I recently found a 10mg extended release dosage that seems to be very good for John.
But I am curious about what pill is working for you folks. Someday we may need to use another option.
John still does some occassional acting out of dreams and talking aloud in the middle of them, but generally he rests better. Weight loss has helped a lot with the apnea, too.

I can relate to wondering what in the world was going on with the acting out dreams. He would sword fight and have all kinds of violent, aggressive adventures in his dreams.
But he was a trial lawyer, and we joked about how he got some aggression out at night in his dream world since he had to use only words for combat in the courtroom. John also has fallen out of bed in the middle of some of his night fights---scary.

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Fri Jan 21, 2011 1:11 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Sleep Disorders as Possible First Symptoms of LBD
In your last post, Pat, you mentioned 'he was a lawyer.' Are Coy, John, and Dale all lawyers?

Actually, Dale fell out of bed just last week during a very active dream. I've put pillows on the floor next to his bed so he won't hurt himself next time.

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


Fri Jan 21, 2011 1:16 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Coy has taken Klonopin for more than 30 years. That seems to be the standard treatment for RBD. It is 100 percent effective for Coy. I was just reading a technical paper that said about 90% of RBD victims respond well to it. The really interesting thing is, no one seems to know why it is effective! When he first started taking it we had to keep justifying it to insurance companies, but it seems to be widely accepted for this use now. In his more active days, we increased the dose slightly if he'd had an especially physically active day (on days be played softball with a senior team, for example.) If he forgot a dose it was immediately apparent that night. Once he took a long trip with his daughter and her children and he bunked with his young grandson. He had forgotten to pack the Klonopin. Oh my goodness! That little kid could only take it one night and he wasn't going to sleep in the same room with Grampa again! (Thank goodness that now we can get a refill virtually anywhere in the country, so forgotten medicines are no longer so traumatic.)

When Coy first started having other sleep problems (with the onset of LBD) his sleep doctor first had us try melatonin -- a drug he recommends a lot, apparently. But that didn't work for Coy. He now takes Seroquel, along with the Klonopin.

Each case is different, of course. If what you are using now works, Hooray! Stay with it. It is good to know, though, that there are other options if the time comes when something else is needed, isn't it?

I sometimes wonder if the fact that treatment kept his RBD in check has anything to do with how long he went before the LBD emerged. I have no basis for speculating that, but if we don't really know how Klonopin is so effective, I figure that I'm entitled to wonder what else it might have done. :P

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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


Fri Jan 21, 2011 1:37 am
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Leone, Coy was a mechanical engineer.

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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


Fri Jan 21, 2011 1:39 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Sleep Disorders as Possible First Symptoms of LBD
I remember now, Jeanne. I think you mentioned something in an earlier post about that in relationship to loss of spatial awareness - which is typical of LBD. Dale never could put anything together. His kids Christmas toys had to be assembled by a friend every year.

Dale is a good speller and had no problem with 'the fine print' but he could never pack a suitcase. :lol:

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


Fri Jan 21, 2011 11:36 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Jeanne, it is interesting that both our husbands had doctors address their sleep issues fairly early on and both our husbands have enjoyed a long time in Stage One.

The more I learn, the more there appears to be a connection for some patients with sleep and this disease. A number of folks have a show of symptoms following anesthesia for surgery, which obviously involves sleep in another way. John's symptoms began after thryroid surgery in 2000.

Is it true that the sleep center of the brain is next door to the part where this disease shows up? Does anybody know that answer?

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sat Jan 22, 2011 2:04 am
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