Welcome to our online support group, Noel.  This really is a support group, because we help each other deal what we are faced with.  Help and support from the outside world is limited.

We PWDs (persons with dementia) on this board aim to be pro-active in our own treatment.  We do this to improve our functioning and to prolong the early stages.  We want to make the experience of having dementia different than it is for people in your dad's generation.  We want to live fulfilling, independent lives for as long as we can.  This is what we talk about on our message board.  There is still life after a diagnosis of dementia!  This is the most important thing to know!

How long have you been on the Aricept, Noel?  You should be on the 5 mg dosage for about a month before advancing to the 10 mg dose.  Are you still working?  Please let us know.

Personally, I have been on Exelon patch and Namenda for over seven years.  I just found out a couple of days ago that I do not have Alzheimer's Disease as a cause for my memory loss.  It appears to be related to systemic lupus and/or sleep apnea.  Fortunately for me, the medications help me quite a bit.

There is much that can be done to enable you to live a more fulfilling life.  I hope that you will continue to post and ask questions and voice your concerns.  We will try to help you and support you, and you can help and support us, too.  More will be along to welcome you.  When you post again, you may want to post on the Younger Onset board, because that is where most of us post.

Iris L.

Hi Noel,

Welcome to the world where no one wants to be.

We are so glad you found this site.

Do read the following. Several of us PWDs swear by:  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,  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.

(I also take Omega 3 and antioxidants.)

(2) Lots of physical exercise ... there is quite a bit of evidence it can help prevent/delay onset. (As strenuous as possible. Recent research shows such build new brain cells!)

(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.  (A variety is best. Figure out what stretches your mind but is not so hard you are frustrated.)

(4) Socialization, doing things with friends and family. (Most of us do not do well in large and/or noisy groups.)

(5) Plenty of rest. 

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

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

(And take meds as directed.)

As far as the Aricept. Some folks see a slight improvement, others don't. The main thing the med does is slow down the progression.

What was the process of your diagnosis? Did you have lots of blood tests, a brain scan and a neuro-psych lasting several hours?  From that exam were you told your strengths and weaknesses?

Do get in touch with your local Alzheimer's Chapter and see what services they offer for you.  If you don't know the #, call our help line 1-800-272-3900 and ask.  Call that # during normal business hours.

PS  Do check out the Alzheimer's Navigator below. 

alz.org has a section for those newly diagnosed.

On-line: Understanding the Dementia Experience can be downloaded for frequent reference. 

Losing My Mind by Tom DeBaggio was the first book written by  a PWD that I read. You can ask at your library.

On Pluto is written by a current PWD.  

Can't recall the author's name. 

The period after you are first diagnosed is generally always a very hard one for people.  We all go through fear, denial, anger, grief, and even some depressive feelings.  So you are not alone in that.  Try do some nice things for yourself during this time in order help offset the hard feelings. 

The best advice I got was someone telling me that I was still me, whole and complete, same as I was before I took the test.  So I will share same with you.  The test doesn't change who you are, you are still you. 

As for Aricept, I am glad you on it.  It is normal for doctors start at 5 mg, the highest does is 23 mg.  The doctor should have you on the 5 mg for a month or so before increasing at 5mg incriments....until you get up clinical dose.

Also, most people on Aricept don't notice anything...so that is OK and NORMAL.  Many people expect a instant boost in cognition...but that is NOT what it does (or college kids would be selling it instead of Adderall get through college).

How people have described how it works is by sort of holding you cognitively (or functionally) where you are now.  There may be some decline while on it...but generally not as much. 

Aricept, however, does not treat the disease process...and the disease will still rage on.  It is more like O2 for bad lungs...it just gives you more neurotransmitter work with.  So, on Aricept, you will not APPEAR decline as much...but the moment you stop it, your function will sink where the disease actually is.  And then, if you start it again...you will be at that new worse level...and hold there. 

All that said, it can be hard take or have confidence in a drug in which you don't FEEL an effect that you notice.  But in time, as you read stories of other people who take their advancing loved ones off Aricept and the rapid decline, you will be very glad you have stayed on it. 

I hope that helps explain it some. 

Hi, and welcome the forum.  I'm 48, I have Young Onset Alz, and I am fairly advanced.  I do believe in being proactive, but I don't think everyone needs feel that same way...as I have met many people with Young Onset and their reactions range all over the place.  Some people are like, screw it...I am going do what I want and let other people handle the details.  In my opinion ANY response is OK, and perfectly NORMAL way of dealing with your diagnosis. 

My belief is, there are just some things that you cannot know until you have been there.  Some people on this board just have MCI (non-progressing)...so they don't always relate as well when it comes the hard, hard news of diagnosis for people who are advancing. 

There are many wonderful people this board.  Some stay largely silent unless something catches their interest.  I personally come and go. Welcome welcome.

<3