Just started on Aricept

Anything on your mind that isn't about RLS/WED? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
ViewsAskew
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Re: Just started on Aricept

Postby ViewsAskew » Tue Jan 27, 2015 9:34 pm

I would not at ALL be surprised if we don't have constant brain function erosion from sleep deprivation! I know I haven't slept well my whole life. I had three alarm clocks in high school. I was always tired in the morning. That MUST do something!

But, I am glad to see that he didn't find anything abnormal...I think. It does mean they are likely not exactly sure, but it also means that it may not be as bad as you thought it could be.
Ann - Take what you need, leave the rest

Managing Your RLS

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sleepdancer2
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Re: Just started on Aricept

Postby sleepdancer2 » Tue Jan 27, 2015 11:57 pm

Thank you for talking openly about this. I am always hesitant to say what I'm thinking along these lines because on one hand I would never want someone going through this to feel the seriousness of their situation is being diminished. Many people do have neurological disorders that will result in progressive dementia in spite of all best efforts. On the other hand, I'd feel real bad if someone's dementia progressed when it may be treatable. I can't begin to know your circumstances. I can only only say that I believe sleep disorders are not given enough credence in assessing and treating memory problems. My personal experience follows. If you don't feel it is helpful for you to get too much outside input at this time, then please don't keep reading. It seems you have doctors who are looking out for your well being, and that's such a big deal. I hope you take some comfort in that.

In the mid 2000's I underwent cognitive and memory testing. I had become fearful about going out alone due to the times I got out and couldn't remember where I was going or how to get to some place I'd been dozens of times. I quit cooking because it was unsafe. If I did cook something quick, I took the dining room chairs and blocked the doorways out of the kitchen so I would be reminded not to leave, and I turned them backwards so I couldn't sit down and fall asleep. I lived by post-it notes - that I often forgot to read. Not only did I forget my keys in the ignition, once I got out of the car and left my keys locked in a running car. Didn't even know I'd done it till I came out of the store. My career was over. I could barely string words together in a sentence, often trailing off mid way and moving on to another subject because I couldn't remember what I was saying. Words went missing so I'd fill in the blanks spaces with descriptions and just keep describing in hopes the word would eventually come to mind. Sometimes it did - sometimes it didn't.

In desperation to stop my downhill slide, I became fanatical about my sleep. I monitored the data from my CPAP machine to be sure my treatment for sleep apnea was indeed therapeutic. (At first it wasn't.) I got a recording pulse oximeter to make sure my oxygen didn't drop at night. My PLMD was augmenting on my 2nd dopamine agonist and making my nights miserable so I weaned off of all leg meds and began self-treating my jumpy legs with a TENS Unit. As my sleep improved, so did my thinking and my memory.

In recent times I moved from a small midwestern town to a huge metropolis across the country, and I'm enjoying exploring the surrounding communities without fear of being out alone. I'm ok with driving or taking multiple buses to and from my destinations. I cook daily without a need for cues. Oh, I still have spotty memory and occasional glitches, but I don't live in the dense oblivion that was once my normal. I have regained a degree of independence. And I have no reason to think the improvements are due to anything except improved sleep.

Because of my experience I am convinced the role of poor sleep on memory and cognition is extremely under valued and should be one of the first lines of exploration and treatment in those with memory problems.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

debbluebird
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Re: Just started on Aricept

Postby debbluebird » Wed Jan 28, 2015 12:50 am

It's been four years since I was fired from my job, due to my memory. I have had plenty of time to get better sleep. I can't see that it has helped at all. But I struggle with my CPAP and my legs. Some nights I might get 10 hours of sleep, others much less. I'm tired much of the time. I think there is permanent damage.

sleepdancer2
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Re: Just started on Aricept

Postby sleepdancer2 » Wed Jan 28, 2015 1:07 am

One cannot make up in quantity what is missing in quality. When was your last sleep study and do you have a copy of the report?
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

ViewsAskew
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Re: Just started on Aricept

Postby ViewsAskew » Wed Jan 28, 2015 2:38 am

sleepdancer2, I honestly think that quality is something we often do not think enough about when we get quantity. Because WED and PLMs can keep you awake, we WED/RLS folk focus on quantity. But, I know I'd rather have 6 hours of restorative sleep over 10 of cruddy sleep!

At my husband's recent sleep study, he was asleep 7.5 hours and that is all they let you sleep. He had zero sleep in stages 3 and 4. He could have slept for 12 hours and the outcome would have been the same. No deep sleep. That is crucial to our memory and learning.

Deb, since you stuggle with the CPAP and the WED, my guess is that you are in stage 1,2 and possible 5 for most of the night.
Ann - Take what you need, leave the rest



Managing Your RLS



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debbluebird
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Re: Just started on Aricept

Postby debbluebird » Wed Jan 28, 2015 11:33 pm

It's been 6 years since I had a sleep study. Maybe I should have another one. Right now, it will have to wait. My husband is going to have surgery. Need to get that all over with first.

ViewsAskew
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Re: Just started on Aricept

Postby ViewsAskew » Thu Jan 29, 2015 12:13 am

debbluebird wrote:It's been 6 years since I had a sleep study. Maybe I should have another one. Right now, it will have to wait. My husband is going to have surgery. Need to get that all over with first.


Ugh. Hope it's something that isn't too scary and that has the likelihood of a good outcome.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

debbluebird
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Re: Just started on Aricept

Postby debbluebird » Fri Feb 06, 2015 2:17 am

Had my first appointments at the memory clinic. Saw their doctor, and speech therapist and occupational therapist. Mainly just asked questions, along with test. I go back in a couple of weeks or so for more tests. Then I go back again to see their doctor for the results, and then back to my doctor at the beginning of March for his thoughts of the test results. Otherwise I'm feeling fine. One thing they do want me to do is to exercise my brain. I think I already do that.

Polar Bear
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Re: Just started on Aricept

Postby Polar Bear » Fri Feb 06, 2015 1:28 pm

I am sure you would have liked to have had a little indication as to how you were performing :)

I also try to exercise my brain..... quizes, sudoko, cryptic crosswords, lots of pc work.
(Actually switching off my brain.... now there's a challenge)
I've heard that it is helpful to occasionally change the type of brain exercise that we do.....
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Just started on Aricept

Postby ViewsAskew » Fri Feb 06, 2015 11:02 pm

I was reading a book on exercising the brain (along with 30 other books, lol) written by a specialist in cognitive function. I seem to recall him saying that what we think of as brain exercises may not be enough. But, I'd have to find in to see if I am remembering correctly and what him recommends.....
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Just started on Aricept

Postby badnights » Sun Feb 15, 2015 8:17 pm

/learning a new language is supposed to be good brain exercise.
Beth - Wishing you all restful sleep tonight
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ViewsAskew
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Re: Just started on Aricept

Postby ViewsAskew » Tue Feb 17, 2015 12:22 am

badnights wrote:/learning a new language is supposed to be good brain exercise.


And unbelievably frustrating, lol!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

debbluebird
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Re: Just started on Aricept

Postby debbluebird » Tue Feb 17, 2015 5:21 am

I think the Aricept is helping. I go back to the doctor in a few weeks.

ViewsAskew
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Re: Just started on Aricept

Postby ViewsAskew » Wed Feb 18, 2015 6:21 am

debbluebird wrote:I think the Aricept is helping. I go back to the doctor in a few weeks.


Very good news!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Just started on Aricept

Postby badnights » Wed Feb 18, 2015 7:40 am

Indeed. Must be nice after wondering if anything could help, to know that it actually does.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
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