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jess1992
Posted: Sunday, October 11, 2015 4:12 PM
Joined: 10/11/2015
Posts: 32


I have early onset dementia and have switched to a new medicine I was wondering if anyone noticed a difference in themselves or their loved one with a particular one?
Mimi S.
Posted: Sunday, October 11, 2015 4:33 PM
Joined: 11/29/2011
Posts: 6561


Hi Jess,
Many folks in Early Stage have commented that they felt an improvement in cognition after beginning Aricept.

Several of s feel that we have delayed he progression of our disease a great deal by our participation in Best Practices:

There are other things you can do to help slow down the course of this disease, including:


(1) Sticking as closely as you can to a Mediterranean diet (with wine and nuts), which has been shown to help prevent/delay the onset of AD, and also slow its progression. See:


Basically, it involves:

- High intake of vegetables, legumes, fruits, and cereals

- High intake of unsaturated fatty acids (mostly in the form of olive oil)

- Low intake of saturated fatty acids

- Moderately high intake of fish

- Low-to-moderate intake of dairy products (mostly cheese or yogurt)

- Low intake of meat and poultry

- A regular but moderate amount of ethanol, primarily in the form of wine and generally during meal.


To that, I would add eating a quarter cup of nuts every day -- quite a few studies have found they're very good for you.


Also, olive oil is very good for salad dressings etc, but not so much so for cooking especially at higher temps. Use canola oil for that, or a mix of the two. (I've seen plenty of products that contain olive and canola oils.)


Avoid hydrogenated fats and trans fats like the plague.


(2) Lots of physical exercise ... there is quite a bit of evidence it can help prevent/delay onset.


(3) Lots of exercise for the brain -- activities that involve learning something new. I've seen some reports that learning new things coupled with using a computer can be particularly helpful.


(4) Socialization, doing things with friends and family.


(5) Plenty of rest.


(6) NO SMOKING!!! and avoid air pollution as much as possible.


(7) Do whatever you can do to minimize stress.


I found a helpful: Living Your Best with Early Stage Alzheimer's by Lisa Snyder.


Also, your state may have an Early Stage Advisor. Call our help line 1-800-272-3900 and ask for the phone # and best time to call your local chapter.


Do tell us more about yourself.



jess1992
Posted: Sunday, October 11, 2015 5:02 PM
Joined: 10/11/2015
Posts: 32


I'm almost 42 I was just diagnosed I have traumatic brain Injury which has basically caused this I was taking aricept but had to switch to exelon patch
Mimi S.
Posted: Monday, October 12, 2015 10:02 AM
Joined: 11/29/2011
Posts: 6561


Jess, it's not uncommon to switch meds.
What are your thoughts of Best Practices?
What was the process of your diagnosis?

jess1992
Posted: Monday, October 12, 2015 1:22 PM
Joined: 10/11/2015
Posts: 32


Hi Mimi I try lots of things as far as diet I do need to get a little better can't have a lot of whine because I take phyciatric medicine I do sometimes . I color do word searches and read I have a journal though I need to write in it more . they think I've had the dementia for awhile but I had drs that weren't very good when I lived in idaho I got here to Washington after a very difficult time i Had a series of Tests in august eeg memory test MRI I almost drowned when I was 2 I have TBI basically my brain gave out
Mimi S.
Posted: Monday, October 12, 2015 6:45 PM
Joined: 11/29/2011
Posts: 6561


Jess, I have no idea if it will work. What is your level of ability to participate in strenuous activities? If you can, get as sirens as you can. Just keep at it daily and gradually increase physical activity.

Same for cognitive activities. That little used journal. Can you write in it every even number day. what you did and any feelings about anything you did. Even the level of activity will be a record to look back on after a month.

Same with changes to your diet. Go gradual.
With Alzheimer's one continues to lose cognitive ability, although Best Practices might slow this down.

Do you know if the cognitive failures continue downward after the first round? what seems to be your experience.

You are in the fight of a life time. Do you think you can be proactive for yourself?

jess1992
Posted: Monday, October 12, 2015 7:25 PM
Joined: 10/11/2015
Posts: 32


I'm tried to read a lot and get more information I don't know if the medicine I'm on will slow the progression but I hope it does I was exercising more but stopped I do walk a lot though. I will really try to journal a lot as much as I can my mom has been my advocate and a God send she's been my right hand I've thought of going into assisted living at some point but I don't have the money not sure what to do there
Iris L.
Posted: Monday, October 12, 2015 7:31 PM
Joined: 12/15/2011
Posts: 15449


Hi Jess. My diagnosis is cognitive impairment. I have been on Exelon patch for over 6 years, along with Namenda.

As Mimi says, it is not uncommon to change or adjust medications.

It is a good idea to keep your journal of how you are responding to your medications. Write down what changes in yourself that you notice.

I am glad you are satisfied with your new medical team. Have they told you that TBI usually remains the same, and may even improve over the years? The dementias, on the other hand, are usually progressive, and worsen over the years.

We patients on this board try to slow the rate of progression by doing Best Practices, as Mimi discussed above.

Are you saying that your TBI was from almost drowning at age 2 years? Were you able to go to school and graduate? Were you able to work? What are you doing now? Are you on long term disability? I was on long term disability for several years. Now I am on regular retirement.

Iris L.

jess1992
Posted: Monday, October 12, 2015 8:46 PM
Joined: 10/11/2015
Posts: 32


Hi Iris yes I went to school but I struggled hard though I graduated I've been on disability since 2010 but I've worked all my adult life in even part time till march I also suffer from bipolar and had a bad breakdown and didn't know about my dementia though I felt thats what it was I had gone to the er and couldn't even remember my own name which scared me I'm really hoping the patch helps I was on aricept for a month I'm going to try journaling more I continue to walk a lot I am sad at times because my 16 can't live with me now and drs and counselors recommend I don't live on my own
Iris L.
Posted: Monday, October 12, 2015 10:25 PM
Joined: 12/15/2011
Posts: 15449


Jess, you mentioned moving to Washington for better medical care. This is very important, because the symptoms of dementia and bipolar disorder overlap to a degree. Very knowledgeable doctors are needed to distinguish the two, and to find the right treatments.

What sort of trouble did you have with the Aricept? It may take a while to see a positive response. I started off with the initial dose of Exelon patch, 4.6 mg, then after a month, advanced to 9.5 mg.

What is your living situation like now? What type of situation are you thinking of moving into?

Iris L.

jess1992
Posted: Monday, October 12, 2015 10:48 PM
Joined: 10/11/2015
Posts: 32


One of my bipolar meds lessoned the effects of the aricept thats why I went to exalon which I just started taking I'll have my memory tested again in December I have a good neurologist and phyc Dr my bipolar has been stable when it wasn't noone could figure out my memory loss I live with mom and Dad its hard because 6 months ago I lived on my own working raising my 15 yr old now everything has changed my whole world is different I thought about assisted living but I don't have the money
Iris L.
Posted: Monday, October 12, 2015 11:02 PM
Joined: 12/15/2011
Posts: 15449


I am glad that you have a good medical team. Also glad that you live in a home, although sad that you do not live with your children. One thing about early diagnosis is that we have time to make plans for ourselves.

Iris L.

jess1992
Posted: Monday, October 12, 2015 11:49 PM
Joined: 10/11/2015
Posts: 32


It has hard but I have an older daughter that lives closer and she's having a baby soon
alz+
Posted: Saturday, October 24, 2015 12:01 PM
Joined: 9/12/2013
Posts: 3233


Jess - I took Aricept for YOAD and I became a ball of fire activity wise for maybe a month. Namenda made me crazy upset so not that.

Eventually even after cutting dosage back I had to quit Aricept as I had an allergic reaction to it (skin covered in raised brown pond shaped plaques doctor said was "old age".) Got off it and skin cleared up.

I have nothing much to offer right now but I do feel the weight of what all this means to you and your family. I am so glad your Mom is there for you and others.

Heart to hearts with children keep us close even when we can not be near each other, losing your freedom to live your life on your own is a big deal. Having brain damage is a big deal. Handling all these changes is a big deal.

None of the dementia drug makers claim the drugs slow progression, but they can give you a boost that makes one able to function differently. For me I was up and about and painted a basement wall, several coats and super tidy job while taking it. I would never have been able to do it otherwise.

Please come back again. As you share your experience it helps 1000s of other people who read posts but never post themselves. Everything you go through, positive or negative and how you get through it helps other people.

That grandchild is going to be WONDERFUL. I AM SO HAPPY FOR YOU IN THAT REGARD!


jess1992
Posted: Monday, October 26, 2015 3:11 PM
Joined: 10/11/2015
Posts: 32


Thanks alz we just took a little vacation and I saw my youngest daughter and people from my old church I felt a little sense of being normal it was nice
The_Sun_Still_Rises
Posted: Monday, October 26, 2015 7:12 PM
Joined: 7/24/2015
Posts: 3020


So far I am only on Aricept for my brain.

I find it helps me more in the day if I take it at 7 AM...if I wake late or forget and take it later, like at 9 AM, then I have less of an effect during the day.

I can tell it wears off in the evening.

I feel a bit clearer in my thinking, more solid in my thinking, more sure of what i am thinking and more able to do things...but I am still progressing.


jess1992
Posted: Monday, October 26, 2015 8:58 PM
Joined: 10/11/2015
Posts: 32


I was on aricept but then I had to switch to the exelon patch it gives me headaches but I think there's a small improvement
Holy Moley
Posted: Saturday, November 14, 2015 5:30 PM
Joined: 11/14/2015
Posts: 1


I was diagnosed with mild dementia, stage 3, this year. My doctor has prescribed Aricept. I can only tolerate 5 mg because 10 mg makes me very ill (nausea, dizzy, etc.). However, even the 5 mg has adversely affected my sleep -- can fall asleep but cannot stay asleep. I have read that sleep is very important for dementia patients and that Aricept MAY slow dementia for a SHORT time. I am very tired for lack of sleep and have become physically inactive because of it, which is a new phenomenon for me. I am thinking better sleep and more physical activity should outweigh any benefit from Aricept. Any comments?
The_Sun_Still_Rises
Posted: Sunday, November 15, 2015 6:40 AM
Joined: 7/24/2015
Posts: 3020


Holey Moley, welcome to the forum, and I am so sorry about your diagnosis. I'm stage 5. 

Some thoughts on Aricept to consider.  It is the normal protocol to stay on 5 mg for 6 weeks before upping to 10 mg...but if/when that upping comes and the side effects don't go away week or so, then yes stay at 5 mg.  The body needs time to adjust to it.  You may have already done all that, but on the off chance that they moved you up too fast.

Aricept doesn't slow anything.  It just gives you more neurotransmitter to work with.  The most recent studies found that we should take Aricept all the way to the final stage, and that those who did stay on it into the later stages were able to stay out of nursing homes.  Provided, of course, you can tolerate it. 

You might want to take the Aricept in the morning when you first get up.  I also have the sleep issues of not being able to stay asleep...only I don't seem to notice it in the day.  But I agree, I think sleep is very important (even if I don't seem to miss it). 

Many with dementia report some interesting things with Aricept and the other drugs in that class.  Some report hallucinations go away, they used to lose things and now they don't, etc.  Most report functioning better on it.  What the consensus seems to have been is that it would appear to hold you steady where you are at as long as you take it...but, if we stop, we decline to where we would have been if we had never taken it...and, then, if we start taking it again, we'd still stay where we were rather than improve back to where we had been before stopping.  As for myself, I do think more clearly and better, but I am still progressing.  I am a bit scared to stop it for fear I would be much, much worse (needing more help than I do now).  As always, ask your doctor.

Anyways, again welcome.


Mimi S.
Posted: Sunday, November 15, 2015 8:25 AM
Joined: 11/29/2011
Posts: 6561


Some additional thought about Aricept. Yes, the beginning dose is usually 5 mg. to be taken at night. Drowsiness is one of the side effects. For those who do take it in the morning, don't drive or do other complicated tasks until you see what effect it has on you. Everyone responds differently to meds. iI you have sleep disturbances that begin with taking Aricept, do call your doctor ASAP.

Some folks, thanks to a lot of publicity, are being diagnosed at an earlier and earlier stage. Therefore, the 5 mg dosage may be sufficient for a much longer period.

All the research I have read proves that taking Aricept does delay the progression of the disease.

The Aricept does not keep you at the stage where you began the dosageIf that were true, those folks taking Aricept would still be alive until something else took them. I know too many folks who took Aricept and who are dead. What I do see is that so many of us diagnosed are having meaningful life for many, many more years than formerly.

Some folks just do not tolerate Aricept. Discuss it with your doctor. There are other meds that can be tried. Namenda is often added as one approached middle stage.

And for all. It is imperative that you participate to the fullest extent possible in Best Practices.  We have to be proactive in our own care.


The_Sun_Still_Rises
Posted: Sunday, November 15, 2015 12:27 PM
Joined: 7/24/2015
Posts: 3020


With all due respect, per the insert, the common well known side effect of Aricept (beyond the runs) is insomnia and trouble sleeping, and trouble staying asleep. 

The poster that I was responding to is likewise claiming trouble sleeping (which is the common side effect). 

And I know, I would never sleep again if I took Aricept at night.  

If it made you drowsy, that would be very interesting, and unusual...and you would likely do better taking it at night...but not someone who it is interfering with sleep.     


eaglemom
Posted: Monday, November 16, 2015 9:07 AM
Joined: 3/7/2012
Posts: 2195


You might want to look up The Mind Diet. It is a combination of several diets, including the Mediterranean diet which was previously mentioned.  I have found that it has helped my DH in his alertness. I personally think simply being off sugar has a tremendous affect on our bodies.

As for the Aricept our neurologist recommended taking it at night. Which is what he has done for almost 4 years. How each persons body responds to any medication is very unique. I will say everyone we know takes it at night.

eagle


Mimi S.
Posted: Monday, November 16, 2015 10:06 AM
Joined: 11/29/2011
Posts: 6561


And again, with all due respect. 

I googled Aricept and it said nothing about time of day to take. It was quite adamant about following doctor's orders about taking the drug.

Therefore, it is not up to any of us to tell patients when to take the drug. Any changes, including time of day, should be first discussed with the prescribing doctor!!!


The_Sun_Still_Rises
Posted: Monday, November 16, 2015 4:20 PM
Joined: 7/24/2015
Posts: 3020


Mimi S. wrote:

I googled Aricept and it said nothing about time of day to take.

-------------------------------------------------------------------------------------

Exactly, because there is no ONE precise time of day that it needs to be taken. 

However, because Aricept CAN and often DOES, as a well known common side effect, give one insomnia and cause trouble sleeping and staying asleep (just exactly as Holey Moley mentioned in her/his post that I was responding to), then it would make sense to consider the possibility of taking it in the morning (if she/he wasn't already). 

Furthermore, no one ever suggested that anyone go against their doctor's orders.  Indeed, no one knows what Holey Moley's doctor's orders even were, as they were not mentioned in the post. However, since it was clear in Holey Moley's post (at least to me) that there was a lot of communication with the doctor going on already...I thought it was a given that it would be discussed with the doctor (and ended my post as such).

---- 

That said, you raise some interesting points...and upon consideration, I have to say that I find it very strange that (in the very beginning of treatment) any doctor (who understands what they are doing) would order Aricept (with it's known side effects), at night, before bed time...just from a purely logical standpoint. 

My doctor simply rx'd it as 1x a day and left it up to me to figure out when I wanted to take it.  At first, I took it at night, since I am generally nervous of reactions, and it helps (me) to go to sleep directly after taking any new med for the first time.  Within a few days, I had trouble sleeping...to the point that I had not sleep for a week solid.  So I switched to morning.  I told my doctor, but she could care less when I take it - so long as I take it daily (that is a paraphrase of her response).  And, in retrospect, I guess I like her that way.  I still have trouble sleeping, but not as much, and the Aricept is well worth it to me - but that is just me.    

Upon further consideration, that I hadn't considered until just now, but if you think about why we take Aricept in the first place (to give more neurotransmitter for brain to function better)...wouldn't it only make sense (logically speaking) to take it during the day when we need our brain the most??? 

Nonetheless, I take mine at 7 AM...and I have noticed a HUGE difference in my day when I forget and take it at 9 AM verses 7 AM...which taught me to stick like glue to 7 AM. I have so much improved brain function when I take it at 7 AM, and it tappers off during the late afternoon, and wears off as the evening starts getting towards bedtime. 

Anyways.  In the end, no one should ever take a personal response to a post as suggesting that all people anything...as always, a personal response to someone is in the context of what that person is asking, and that person's specific issues.  Example, Holey Moley's trouble sleeping per Aricept has nothing whatsoever to do with Mimi's drowsiness on Aricept.

Best to you, Mimi.

Welcome again to the forum, Holey Moley. 


alz+
Posted: Tuesday, November 17, 2015 12:49 PM
Joined: 9/12/2013
Posts: 3233


Jess - I re-read this post regarding medicine and dementia and do NOT recall posting an answer to you. But when I re-read all you are going through just had to say I wish you all the love and courage in the world.

Do brain injuries usually turn into dementias? I really hope there is some easier prognosis.

  Read some where women need lower levels of any medication than normally prescribed (men are standard tests subjects?) and over 50 women need even less.

My personal experience is I need less than half, usually 25% of any medication!

The thing is 2.5 mg Aricept worked for me when I could not tolerate 5mg.

Holey Moley - Is that right name? Hope you post more often - we all learn from each other.

we are only experts in our own lives, but there are often things mentioned in posts that help others. Our lives and bodies are unique, encourage us all to believe in our reactions.


 
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