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 Sleep Disorders as Possible First Symptoms of LBD 
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Frank's sleep habits are somewhat the same. He reaches in the air, also if he has dozed off in a chair, he carries on a conversation, with more clearity than when he's awake. He also hums and sings. Another thing he has done for several years, is he thinks he has something in his hands, he always has to go to the trash to dump it.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Thu Dec 02, 2010 7:22 am
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Gerry, once again it sounds as if you live with Ken. He also hums and sings in his sleep and speaks more clearly than when awake. He also laughs. He doesn't dump trash in his hand, though. He will, however (when lying down) put one hand in the air and just hold it there. Hmmm. Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Thu Dec 02, 2010 9:41 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
Robin, thank you for the translations.
I went to the article summary of Dr. Boeve. It sounds like John fits the description of RBD+MCI=Early LBD pretty well. Thank you for the link---very informative!
Doctors need to know about the positive impact of early and aggressive treatment for patients like John. Our family felt like he returned to us in so many ways once Dr. Kaufer took hold of his treatment. He first addressed the sleep quality issue, then added Exelon patch, then Namenda. John has thrived under his care, though we still can see the progression of the disease in some ways.
I hope caregivers will keep searching for knowledgeable neurologists until they find one with the expertise and understanding to help their LO.
Sadly, some of my friends with husbands who have degenerative brain diseases just settle for the first neurologist they see, even when they feel unheard and frustrated by the care they receive.

Sher, contact with others on this website is the first time for me to find others who have similar stories. It makes you feel less alone in it, doesn't it?

_________________
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 Dec 03, 2010 12:19 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
You wrote:
"I hope caregivers will keep searching for knowledgeable neurologists until they find one with the expertise and understanding to help their LO."

It's not that easy, Pat. We went to six neurologists before we settled on the one we now have (and I'm not 100% happy with him). Each one guessed. Some said Parkinson's. The problem, as you know, is that the Lewy diagnosis is not positive until the autopsy. Dale had a long history of sleep walking - and dizziness. That's not much to go on.

He went through all sorts of testing. We live in central Florida and the farthest we went to meet with a neurologist was Tampa. Admittedly, we could have gone to Mayo in Jacksonville... but, as I said, the diagnosis would not have been definitive even then. After hearing reports from a few who have gone there, we decided against it.

It has also been our experience and that of many others, that the drugs offered do not guarantee any result. It's always, "Here, try this." We're in the process of stopping Sinemet because of the constant delusions and hallucinations.

Others have problems with Seroquel but it has given us a full night of sleep. Dale used to get up 4-5 times during the night and wander around trying to find the bathroom. I put alarms on the doors but our eventual solution was a condom catheter.

I'm relatively sure there is no neurologist or medication that can put the brakes on the progression of Dale's disease. The constant dizziness started in 2002 but I think he has had this disease all his life. The progression is inevitable. I'm just glad he is not in a wheelchair yet. He has just now begun to regularly use a cane and/or walker.

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


Fri Dec 03, 2010 1:16 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
Leone, you are right. It is not that easy. It is hard and it is long and it is frustrating and it can be exhausting.
Our journey started ten years ago, and it took seven years before a confirmed diagnosis (and, yes, I understand about autopsy being the only absolute confirmation).
Dr. Kaufer was doctor number 12 for John since the beginning of his puzzling symptoms. He was the third neurologist, and it took him over 2 and a half hours to finally confirm what the Duke neurologist had said.
This disease fluctuates and looks like many other diseases and conditions at times. John was already being treated with an antidepressant and Concerta for attention issues before we ever saw a neurologist.

You are also right that some meds work well for one patient while causing problems for another patient. John did not respond well at all to Sinemet, so we had to back off on that one. We are trying other approaches to help him with stiffness and movement issues since his body does not seem to like some of the Parkinson's meds that might do wonders for someone else.

You are also right when you say that LBD is going to progress no matter what we do.
But a key difference in Dr. Kaufer's approach has been controlling symptoms for as long as possible. He calls this "preserving personhood". The Duke neurologist gave us no options for meds on John's first visit, which was shocking, I think, to Dr. Kaufer based on his reaction when we told him.

And that is why my advice still stands.
People new to this website and new to this disease need to know that there are some doctors out there who do get it, who will and can help them in their daily lives.
Persistence in the search for a knowledgeable and caring neurologist can make a huge difference---extra time that is good with our loved ones. While stopping the LBD progression may not be currently possible, alleviating some symptoms, at least for a season, is possible, especially in the early stages of LBD. That gives people hope. And hope is good medicine all by itself.

_________________
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 Dec 03, 2010 7:14 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
How does anyone know which doctors are giving the best advice? Unhappily, all Lewy patients die. Not any are cured. Not even those under Dr. Kaufer's care.

However, let's assume that I failed to get the best doctor for Dale in the very early stage of Lewy. We live in a small town and I'm not positive that our doctor is the best choice. Should I feel guilty? Am I too late? Should I move to a big town where the choice is greater? Should I pack Dale off to Mayo?

I'm tired of experimenting. It's my guess that most of the people who post here have been on this road for a while. We're sharing our pain as we watch the disease progress. There are no 'do-overs.'

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


Fri Dec 03, 2010 8:33 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Leone, after reading posts from some whose LOs were being seen at Mayo, I'm almost relieved that Derek is not. Not that Mayo is not a fine institution but it's clear that the outcome is not always better than it is with small-town doctors and community support.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Dec 03, 2010 8:47 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Sleep Disorders as Possible First Symptoms of LBD
We all do what we can do. I do the best I can possibly do. But I am not going doctor shopping any more.

We can do as many exercises, both mental and physical and in the final analysis we have no real idea of whether it worked or not because there is no experimental group being contrasted with a control group. Maybe like Don Quixote these folks are just tilting against windmills. Some of us like to poke vitamins in our LO's mouths. Some swear by Sinemet and others scoff at it. For some LO's the slope is steep and the descent is rapid. For others it is a slower glide to the same destination.

What all of us are doing is dealing with our anxieties about this disease in ways that help us cope...new docs...new vitamins...prayer groups...exercise. We are all, even though we don't admit it trying to cure the incurable. I am always one new perscription away from Nirvana. (The new script is for Del, not me.) (Although, now that I think of it, Nirvana in a pill tube...just for me... sounds okay.)

It's the loss of control....or the loss of the perception of control.

I think I am having a bad night. Smiles, Nan


Fri Dec 03, 2010 11:23 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
From what I've read, I would be somewhat distrustful of a doctor who gave a 'confirmed diagnosis' of LBD - especially in the early stage. Dale's doctor is reluctant even now to say Dale's condition is anything other than dementia.

Most diagnosis is a process of elimination. Some suspected of Lewy have tremors; others don't. Some have mood swings; some thrash in their sleep; some have swallowing problems; some have delusions; some have hallucinations; some get up 4-5 times in the night to use the toilet; some are extremely paranoid; some have capgras; some need a walking aid early, etc. In fact, it is often the reaction to certain meds that make the diagnosis more likely.

Lewy bodies are the small clumps of protein molecules present in large numbers in the brain of people with Parkinson's disease. In Dale's case, that was the original guess. It wasn't until seven years later that Lewy was the guess. It's still a guess.


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


Sat Dec 04, 2010 12:23 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Nan, very well put!!!

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Dec 04, 2010 12:28 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Thanks. I do get on a soapbox now and then. Nan


Sat Dec 04, 2010 12:36 am
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Sleep Disorders as Possible First Symptoms of LBD
I'll second Pat's vote.... Thanks, Nan. it was a good use of a soapbox.

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


Sat Dec 04, 2010 12:56 am
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Nan,
Get on that soapbox where we can all hear you! It's nice to vent at Lewy once in a while and where better to do so than here where you have an understanding audience? I have had more than a few of those frustrating days that ended at his website just letting loose. BTW, let me know if you find that Nirvana in a pill, hmmmm? Big hugs to you and thanks for sharing, Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Sat Dec 04, 2010 10:06 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Thinking back I'd say Frank's first symptoms would be unable to figure things out. He was a plumber and it got so when installing anything new the directions didn't make sense, and he also had a slight tremor. We went to a few Dr's and then saw our neurologist, he had absolutly no bedside manner but I do think he knew what he was doing. After trying a few meds she suggested others but said they had to be prescribe by a psychiatrist, I think that was a copout. We did find a very good geriatic psychiatrist who agreed that it was "probably" LBD. Frank is certainly better than he was before the meds and I think it's as good as it gets. We have an appointment every 3mths but I email with any questions or changes, he returns my emails within the hour.

We no longer see the neruo, all he did was take vitals, ask some memory questions and check reflexes, to me it was a waste of insurance money. With reading available info, everything I've read here, and we have two friends whose husbands have LBD the stories are all so similar, I never considered getting another opinion. They say life is short but when you have Lewy, each day seems endless. This site is a God sent.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Dec 04, 2010 10:29 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
Being a plumber and not being able to follow the directions must have been traumatic. Dale never could follow written directions for assembling anything. (He was a lawyer and could read the small print though.) There was always something wrong with his ability to conceptualize what went into what. Isn't 'spacial deficiency' one of the primary problems in Lewy? Sadly, he never couldn't put the kids Christmas toys together.

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


Sat Dec 04, 2010 10:40 am
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