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.
debbluebird
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Just started on Aricept

Postby debbluebird » Wed Dec 17, 2014 4:32 am

Saw a Neurologist today. I really liked him. He started me on Aricept, a very low dose. 2.5 mg every day. I have been diagnosed with a type of dementia, very specific type. It probably started at least 10 years ago. He said I for sure, don't have Alzheimers. I turn 64 in about 10 days. I'm hoping that I will be able to tolerate the med. He also said that the dementia should continue to happen slowly and that the Aricept should slow it down further.
I hope that it doesn't affect my WED/PLMs.

ViewsAskew
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Re: Just started on Aricept

Postby ViewsAskew » Wed Dec 17, 2014 7:22 am

I hope it works AND that it doesn't affect the WED.

How are you feeling about it? Sorry for all the questions I know I'm going to ask .... Were you expecting this diagnosis? You've talked about memory issues. I know I have them...but I'd not expect someone to tell me I had a form of dementia. Do you mind sharing the specific diagnosis? I didn't even know they could tell different types apart!
Ann - Take what you need, leave the rest

Managing Your RLS

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Polar Bear
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Re: Just started on Aricept

Postby Polar Bear » Wed Dec 17, 2014 1:39 pm

I'm sorry you've had such a diagnosis and wonder with interest how experts can be so specific.
So many of us here have memory and concentration issues.... and I know that I wonder at what point it could be more than a medication issue.
Regards.
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

debbluebird
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Re: Just started on Aricept

Postby debbluebird » Wed Dec 17, 2014 2:42 pm

:D :D He gave me a few tests. One of them was a list of items. I've taken that test before. This time I was able to recite back every item. I told him that sometimes, I wouldn't be able to do that. I almost forgot the first item. I told him that I was aware of my memory issues. I have had patients, that didn't know they were having issues, or at least didn't know the extent of the memory problem. He said that was one of the clues of my type of dementia. I think that this has been going on for at least ten years. In a month I will be going to a memory clinic. He said it's on of the best in the country. There I will find out more. That's about all I can tell you for now. We will see how the med affects me over the next month. I'm on a very low dose. I'm splitting the tabs in half.
We are on the way out the door. Later I will list the things that I believe that I have trouble with. Going to see cardiologist today. Blood pressure is still high.
I feel good, believe it or not. :D

ViewsAskew
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Re: Just started on Aricept

Postby ViewsAskew » Wed Dec 17, 2014 9:03 pm

Glad you feel good!
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.

Rustsmith
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Re: Just started on Aricept

Postby Rustsmith » Wed Dec 17, 2014 10:01 pm

I am going to be interested to hear about some of the details of your diagnostic tests. I want to see how they compare with the research level tests that get from the long term Alzheimers research program that I volunteered to participate in. I got such a large number of tests that I know that there had to be more than would normally be used for diagnostic purposes.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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debbluebird
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Re: Just started on Aricept

Postby debbluebird » Thu Dec 18, 2014 2:09 am

Here are the things that I noticed. The saying "out of sight, out of mind" is very true for me. If I think of something that I need to do, I either write it down, or place the item in the chair next to the front door. If I write stuff down, it's on sticky notes on my computer (there when I first open computer), or put it in a tablet. Of course, I have to remember to look into the table. Otherwise I won't remember to take it, or do it. I put notes in my phone. I have trouble with math. I used to be very good in math. I can't do simple math, adding and subtracting. I can't spell simple words. Even some four letter words. Words don't look right to me. Things that I have done in recent years, I have no memory of doing. I have trouble with directions. Comprehending stuff. I have trouble following the plots of shows on TV. I don't enjoy regular TV anymore. I get too agitated, if the hero's are in trouble, etc. Forget names. I forgot that my niece had a baby and was a year old. When my daughter brought up her name, I said, who is that? I have trouble quilting. I will cut material and part of it will be wrong. I also repeat myself, which my husband is very aware of. I sometimes know I am repeating myself. There might be other things, "but I don't remember" !!! :D
I forgot to ask him if any of this has to do with all the sleep deprivation that I've probably had over the last 25 years. He said it will continue to be slow in getting worse. The meds should help that too.
I guess that's about it. If I think of stuff, I will add it.

Yankiwi
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Re: Just started on Aricept

Postby Yankiwi » Thu Dec 18, 2014 8:31 am

Thank you very much for your honesty and openness in discussing your progressing dementia. You are very brave and kind. I'm sure dementia or the possibility of it is something we all wonder about.

Polar Bear
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Re: Just started on Aricept

Postby Polar Bear » Thu Dec 18, 2014 10:06 am

I very much echo Yankiwi's post.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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Rustsmith
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Re: Just started on Aricept

Postby Rustsmith » Thu Dec 18, 2014 11:59 am

Thank you for describing your situation. I have seen it several times in members of my family, but getting the perspective of someone going through the initial stages is invaluable.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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 » Thu Dec 18, 2014 5:21 pm

Rustsmith wrote:Thank you for describing your situation. I have seen it several times in members of my family, but getting the perspective of someone going through the initial stages is invaluable.


I had a really hard time convincing people that something was wrong with me. It has taken two years to convince my current doctor. I've had her two years. I was worried that no one would do anything until I was really bad. Then, what would be the point. The whole point is to catch it early. Most people aren't treated until they are really bad. I'm an RN and I've seen many people at that point. The other problem is that families aren't willing to admit that the family member is sick. Or the person is not willing to admit that something is wrong, or the dementia is such that they can't see it. I am lucky that I could see something was wrong.
When I first started having issues, I thought is was stress and being sleep deprived.
I have three friends, right now that I can see problems with their memory. Both of them tried many times, to tell me that I was fine. I knew that I wasn't fine. I wish they could see what is facing them.
Actually I feel very good about it all. It is a relief that now, I am on medication and just maybe it will slow it down. It is what it is.

ViewsAskew
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Re: Just started on Aricept

Postby ViewsAskew » Sat Dec 20, 2014 12:24 am

I can see why it would be a relief.

My BFF and I went to college together - same major (psychology). We often expressed that the worst must be to have something and KNOW it, but not be able to resolve it in any way. Many things you're not aware of - so the person who has it isn't suffering in the way we perceive it. But, when you can see things not working - it has to be VERY scary. And, to now be able to convince others? Terrifying! I'm so glad she listened to you.
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 » Tue Dec 30, 2014 4:47 am

Deb, how do they figure that it began ten years ago? Did you reach that conclusion because that's when you first noticed memory issues, or did the doctor conclude that, based on something else?

What I find most remarkable in your story, besides your calm telling of it, is that everyone wanted to deny the existence of a problem, not only friends but also your doctor. That's an eye-opener.

I hope you're still cheerful and that the Aricept has a noticeable effect on progression.
Beth - Wishing you all restful sleep tonight
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debbluebird
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Re: Just started on Aricept

Postby debbluebird » Thu Jan 01, 2015 1:48 am

I first noticed memory problems 10 years ago, but it was minor, so I thought it was stress. Then it became impossible to do my job. I was evaluated back in February 2011& got disability because of my memory. But it took this long to get medication. I think they thought it was my drugs for WED PLM & sleep deprivation. Dose is low for now. Will be increasing it.

debbluebird
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Re: Just started on Aricept

Postby debbluebird » Tue Jan 27, 2015 8:59 pm

Had an MRI of my brain yesterday. Also saw the neurologist. My MRI looked good. Nothing organic wrong. He also seemed surprised. I think he was expecting to see abnormal changes. He increased my Aricept to a full tablet. He is looking forward to what the memory testing will show. I'm scheduled for Feb. 4. Then I will see him again about 2 weeks after that.
I think my dementia is from sleep deprivation. I know it's been going on for at least 25 years, maybe longer. Who knows.


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