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Neuropsych Test and Clinical trial
KayeK
Posted: Wednesday, January 21, 2015 5:03 PM
Joined: 6/1/2014
Posts: 52


I went in December to Neuropsychologist in Charleston at Roper Clinical Biotechology Research program to be tested for EOAD. They called me today and said my test results were sufficient Memory Issues most consistant with Early Onset Alzheimers. I have to go back in Feb and have a physical and some other test done but I do qualify for a clinical study on a med to help with the depression anxiety madness and crying. I am excited and apprehensive . Thank goodness though they are willing to try and help.


llee08032
Posted: Wednesday, January 21, 2015 8:05 PM
Joined: 5/20/2014
Posts: 4408


Sorry, KayeK.

I am excited and apprehensive.

That must be putting it mildly. Take care! Even though you suspected this and knew deep inside the confirmation of dx still has to sink in...Let us know how you are doing.


Iris L.
Posted: Wednesday, January 21, 2015 9:07 PM
Joined: 12/15/2011
Posts: 18520


Hello, Kaye. I'm sorry that you have received confirmation of what you've been suspecting. But all is not lost. You already know about Best Practices. Did the neurologist mention beginning Exelon patch or Aricept? They can help with your memory.

Now is the time to take care of your legal and financial preparations, if you have not already done so.

This can be a disturbing time. Stay encouraged. You can continue to have a fulfilling life. Think about what you love to do, and figure out a way to keep doing it.

It won't be easy. But we have to pull ourselves together and go forth. When I suspected I might develop dementia, I decided, that I was not going down without a fight. I'm still fighting!

Iris L.



KayeK
Posted: Thursday, January 22, 2015 7:24 AM
Joined: 6/1/2014
Posts: 52


llee I understand it really had not sunk in but i did know in the back of my mind what was going on. It did kind of throw me for a loop and my anxiety is high on this. I hope this helps.
Iris as I said above I did know deep down. I have been on aricept now for a few months I also take zoloft for anxiety and depression been on it for several years and it has been upped in the last few months. I am going into this with an open mind . I do know there is not a cure . This med they are going to try is hopefully going to work with the aricept and zoloft to bring my depression down and is suppose to help clump together the proteins to slow down and hopefully stop this dreaded disease.
Thanks for all the kind words of encouragement.

Mimi S.
Posted: Thursday, January 22, 2015 8:31 AM
Joined: 11/29/2011
Posts: 7027


Hi Kaye,

Thanks for all the updates.

From my experience on this board, I think that your very proactive stance will go a long way towards keeping you in early stage for quite a while. l

Lisa, one of our Peer Volunteers has also participated and is currently participating in a clinical trial.

Paul Hornback
Posted: Thursday, January 22, 2015 8:32 AM
Joined: 8/9/2013
Posts: 584


KayeK, like Iris said, try to stay encouraged for life is not over! I agree with her totally as I am a fighter as well. After my diagnosis, I decided I would do all in my power to help the cause. I participated in an 18 month clinical trial, wrote a book, spoke about my disease, raised money, and so many other things. But first, like Iris suggested, I got my life, finances, legal matters, and personal issues in order.

It is a lot to digest once you get that first diagnosis. But be encouraged for many of us have been successfully fighting the disease for many years (over 5 years for me). Hang in there and take care of yourself, follow the best practices, stay active on the boards, and if possible find a support group in your local area (or even start one).

God Bless, Paul


KayeK
Posted: Thursday, January 22, 2015 12:57 PM
Joined: 6/1/2014
Posts: 52


Thanks Everyone!
Paul thank you too for the advice I am journaling now taking my meds and we do not have a local support group . My church family is willing to let us use our fellowship hall to start meetings there so hopefully in the next month or so our support group will be up and running. I am excited and nervous of course.

Paul Hornback
Posted: Friday, January 23, 2015 2:16 PM
Joined: 8/9/2013
Posts: 584


KayeK, good luck with your support group start-up. We started one at our church, a Memory Café, last year and got the local health dept, extension service, local Alz Association chapter, and Hosparus to partner with us. We've had 4 meetings so far (once per month) and our group is growing. We also meet in our churches fellowship hall.

We try to have a theme for each month to spark some conversation among everyone together. Then we eat a light snack and just talk with each other. Those with memory problems sort of mingle together to support one another and their partners sort of migrate together to talk and support one other as well. I was a bit nervous when we started but it has been going great!

The local newspapers have advertised our meeting time and location each month, the local churches put in a word about it, and the Extension office and Alz Association list it in their monthly newsletters. This has helped get the word out as well.

Once again, good luck with your group and if I can answer any questions for you, please ask.

God Bless and good luck, Paul


KayeK
Posted: Saturday, January 24, 2015 7:50 AM
Joined: 6/1/2014
Posts: 52


Paul ,, thank you so much for the information. I have been apprehensive about this but I will have help to do it so that seems to make it a little easier. I appreciate all the information you have given me and I will do get the word out to alot of churches .. We are the bible belt here LOL and there are so very many in our immediate county. So hopefully we will be able to get it started. I will also look into getting it into the paper . Thanks again for all your help.