Today I had an early visit with ny Neurologist (wasn't suppose to
see him until Dec.) but the aggression & agitation appears to be
worse so my husband called and got me in rather quickly.

After we talked in depth but rather briefly, he had me do some tests
I had not done before. He had me to draw a clock with the numbers
and then put 10 minuntes until 11 on it. I forget the 12 on the
clock and started with 1 and because of that my numbers were off and
got the time all wrong.

He then drew a maze of half x's and then asked me to complete the
x's, I started out pretty good and then my x's quickly changed to
t's.

He asked me to pat my leg with my hand rather quickly flipping my
hand each time. The right hand could not get in the rhytm, the left
got it after a few tries. (my left hand is dominant)

He checked reflexes in the knees, ankles and arms. He kep repeatedly
checking the right knee and there was no reflex what so ever.

After his evaluation along with the other routine stuff, this is
what he said.

"In Alzheimer's Disease the nucleus basalis of Meynert in the
substantia inominata is heavily affected. The drug (donezepil)
Aricept boosts the transmission of the neurons in this area of the
brain. In FTLD, sometimes boosting the transmission of the neurons
in these areas leads to increased behavorial problems such as
agitation and verbal aggression."

So, he took me off of Aricept and is leaving me on the Namenda by
itself as Namenda works as a cognitive booster.

There is a new therapy in the experimental stage called Chelation
Therapy. This is where drugs are given IV to "rinse" out the
abnormal tau proteins in FTLD. This experiment is currently being
done at the Mayo Clinic.

So, for any of you that may be experiencing more agitation or
aggression with Aricept this is something to discuss with your
doctor.

Hi Tracy,

Thank you for that post. It was very informative for me, not only from a medical standpoint, but also may come in handy with my grandmother. While reading your post I was continuously impressed by how articulate you are. I mean this with complete respect, but I was wondering if you had to constantly remind yourself of what you wanted to write about, or has your short-term and working memory still remained well-intact? I'm happy your neurologist found a solution for you; I hope you see less side effects with just the Namenda. Looking forward to your reply. -Aitan

Wow, Tracy, thank you for that! I know it will benefit many.
One thing really struck me about your post (other than my
extreme gratitude that you bring these things to us), and
that is how lucky you seem to be in your choice of doctor.
He so totally did not flip you guys off, or just go on to
recommend yet another med, but instead gave you a
reasoned explanation and a reasonable solution.
I truly hope dropping the Aricept helps you.
Keep us posted!
Carol

Aitan and Carol, thanks for your responses. First I want to tell you that what I wrote from my doctor, was a copy of what he gave to me in writing, there is no way on earth I could have written that on my own. I can't even tell you what the words mean. After our appointment my husband had to break it al down in to simple terminology so I could understand.

People don't see that it takes me sometimes an hour or longer to compose a simple post because I have the time to sit here and go over and oaver it again as much as I need and then I still make mistakes.

My neurologist is an awesome physician and has always taken time to explain things to us even though he knows I don't understand he gives my husband an anatomy lesson. He was voted the #1 Neurologist in Southwest Mo. this year and last year.

The bad thing about this is now there is absolutely nothing that I can take to slow the progression of this disease, I can only take medications to assist the agitation and aggression, he mentioned tranquilizers in the near future. Thinking about this sadens me greatly. As we know all roads come to an end.

Tracy,
Thanks for the info. Mom had her first memory test last week, and the doctor decided to try Namenda on her. I still have the sample packet, as I didn't know if I wanted to try it or not. I think now I will.

Jackie

Tracy thank you so very much for sharing this information.

With BFM we had to take her off of Aricept as well because it was causing her the same problems with aggression. We started noticing it at night with her hallucinating and not sleeping well (maybe 20 minutes at a time) so we changed her dose from bed time to the morning with her breakfast.. and sure enough her aggression, hallucinations and agitation started happening during the day.

Her PCP took her off the Aricept and with in 3 days she was calmer, and sleeping thorugh the night!!!!!!!

Because she was already in the later stages before we took her off he decided to not put her on any other medication for a while.. as it turns out we even took her off the Namenda a few months later. Her progession was pretty steady at the time so we felt that it wasn't doing much good for her so why keep her on it.

Best of luck to you..

You do truly amaze me!!!!!!!

Okay Friends, I am am not strong as thought to be. Now knowing that the Aricept may have been slowing the progression of the disease but yet increasing the aggression, I now understand that I have nothing to slow the progression and honestly it scares the hell out of me. Will I be in a home in a year? Will I stay alert through all of this? So many questions, I see my neurologist again in Dec. to follow up on the Aricept being discountinued and to see if he needs to add anything else for aggression. I do not want to put my family through this, it is breaking my heart!

Dearest Tracy,
Please just grasp tightly onto the love of your family and friends
(including all of us).
I know that you worry about the pain your loved ones feel.
I am so very sorry for the magnitude of it all.
I pray that as your broken heart mingles its tears with the
brokenness of those who love you so dearly, all of your hearts
will be comforted by knowing that none of you are alone.
You love your family.
They absolutely must adore you.
I am so grateful you are not alone.
Please let us know at any time how we can help you and your
dear ones.
Love,
Carol

Tracy dear, you have made such an impact on all of us here, you are an amazing lady and I just wish the very best for you in the future as you travel this road - very slowly I hope - and remain on top of things for as long as you are able. Your family so obviously love you so much my dear and will continue to do all they can to make life as gentle and normal as possible. God Bless you Tracy.

Dear Tracy,

I pray for continuing courage and strength for you in the coming months. Fingers crossed that Namenda staves off the progression and that the deletion of Aricept will not cause you any setbacks.

A hug to you - it's not much but I would like to ease your fears and sadness by letting you know you are cared about greatly here on this forum.

Oh My Dear Tracy,
You are much stronger than you give yourself credit for.

I have so many thoughts in my heart right now and wish desperately that I could put them in to words to comfort you even just a little.

The love that you show towards your family and it's obvious they have the same love for you is stronger than any disease is. Take that love and wrap it around you like a warm confortable blanket and let it sheild you from the uncertianties, questions and fears. Let your friends here shoulder some of your burden so that the cross you are bearing will be lighter and easier to handle.

My thoughts and prayers are with you..

Hi, Tracy it is so good to see you. I too am coming off of aricept. I didn't know that the aricept was the cause of my aggresive behavior. My doctor took me off the aricept and added Zoloft. The zoloft has settled me down and helped my family and friends.

Tracy, we can only take it one day at a time. Sometimes it is one minute at a time. I know! ....those can be some longggg minutes.

Let's just hope that someone will find an answer soon for us and the countless others who are affected.

My dear Tracy,

I find your posts to be so powerful, so mesmerizing. God has not only blessed you but He has truly blessed caregivers through your willingness to share such detailed information.

Would you mind if I pulled from some of your posts in an attempt to write a poem for you?

May you continue to share your thoughts, your fears, your blessings, your life with us and know your sharing, you are enriching our lives.

Love, thoughts and prayers to my special friend,

Joyce

I agree your posts are very powerful. It's amazing how we can sense your strength through your words. I just wanted to add that although you are scared (which is obviously normal under these circumstances), the way you are handling your situation (almost like a challenge), is really inspiring. I don't think I could ever complain about anything trivial again, suddenly it's all in perspective for me. Thanks for taking time to write your posts; this one was really educational.

Joyce, yes please feel free to write a poem for me, I would like that