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New Members, please join us on the Younger Onset board
Iris L.
Posted: Monday, April 17, 2017 1:27 PM
Joined: 12/15/2011
Posts: 15312


We have two boards for patients.  Most of us post on the Younger Onset board, regardless of our ages.  It is unfortunate that many members are Younger Onset.


Iris L.


Mimi S.
Posted: Monday, April 17, 2017 8:13 PM
Joined: 11/29/2011
Posts: 6223


Well, as many of you know, I'm well past the Early Onset age. Those diagnosed at a younger than normal age make up on a small proportion of those living with the disease.  And those folks have usually had a harder than normal in getting diagnosed. Doctors are too much in denial that such a thing is possible and so time is lost.

However the Younger Onset folks more than make up in (can't think of the word I'm looking for) in proactivity for their lack of numbers.

 And currently this board is not used much but it is still checked. So, post wherever you wish.


EJColliton
Posted: Saturday, April 22, 2017 12:57 PM
Joined: 4/22/2017
Posts: 1


MY doctors are thinking early onsite dementia.  I'm only 57.  Really scared. Had the MRI now ready for test

 


julielarson
Posted: Saturday, April 22, 2017 2:59 PM
Joined: 9/30/2015
Posts: 1156


E Colliton , welcome here to the boards. I am sorry you find yourself in this boat with holes in it like the rest of us.. I have MCI so far as a diagnosis but I have some symptoms that could be seen as BVFTD but as of yet no one is listening to me about that.. Is  the test you are going to have the Neuropsychological test?  It is the best test to have to pinpoint the kind of dementia you have or if it could be that your memory issues could be something else like depression. There will be others along here soon that will welcome you and be of service in helping you to know that you are not alone on this road.
Mimi S.
Posted: Saturday, April 22, 2017 7:10 PM
Joined: 11/29/2011
Posts: 6223


Wecome to our world.

We're so glad you found us.

From your library, do ask for a copy of Doraiswamy and Gwyther of Duke University: The Alzheimer's Action Plan.  You will learn about all the facets of a good diagnosis.  All are important.

EJ. Do get in touch with your local Alz. office.  Most have a peer to peer program where you a paired with a person with dementia. Having someone you can talk with any time can be so helpful.


BlueSkies
Posted: Sunday, April 23, 2017 11:23 AM
Joined: 2/24/2016
Posts: 1093


EJ, Sorry to hear you are having problems.  Can you tell us more about your situation and symptoms?  You have come to a good place for support and information..  Please come back and join us on the EO board.   Looking forward to getting to know you better.  Hang in there.  It's sometimes a long and rough ride to getting a diagnosis.
Iris L.
Posted: Monday, June 19, 2017 11:10 PM
Joined: 12/15/2011
Posts: 15312


We are here for new members and lurkers.  Please join us on the Younger Onset board.  Many YOAD members are waiting to meet you!

 

Iris L.


Iris L.
Posted: Friday, June 23, 2017 4:34 PM
Joined: 12/15/2011
Posts: 15312


There are many members on the YOAD board waiting for the new members!  Come join us!


Iris L.


Andy59
Posted: Saturday, July 1, 2017 10:08 AM
Joined: 12/30/2016
Posts: 75


Welcome. Im in the same boat as many others, and I have  MCI. I do believe my last Neurologist felt I had EOAD, as he wanted me to start aricept, which he only prescribed after seeing my neuro cognitive test results. Sometime next month I will see a new neuro and see what he/she has to say.

Sorry you have to be here EJ, but I cant think of a better place to be to seek out others, and learn from their vast experiences. I know when I first found this site, I spent the entire day using the search feature and typed in question after question, and various topics, and found excellent answers.


Determined
Posted: Friday, February 23, 2018 11:48 PM
Joined: 3/13/2016
Posts: 8


I can't seem to find an EOAD support group in my area. Is it because so many of us don't let the world know because of the stigma? When I went to a meeting they thought I was a caregiver... or a volunteer. And I particpatd in the brain games and then left, and didn't tell them any different. Didn't want to embarass the dedicated volunteers there. Also, in my state, our Virginia General Assembly just passed a bill to allow doctors to prescribe Cannibis Essential Oils. Since I see no difference with the  Aricept and quit taking the Namenda because it was $500 out of pocket monthly and I didn't see any differences and due to my Obamacare individual insurance I am going to have to switch neurology providers again. How can I find one in Richmond, VA that would be receptive to trying to prescribe it to me once the regulations with the Board of Pharmacy and Board of Medicine are finalized.

I feel hopeless right now except for the fact my legislators at least listened when I told them to bring this bill up! And she did!

Tammy


Mimi S.
Posted: Sunday, March 4, 2018 9:01 PM
Joined: 11/29/2011
Posts: 6223


 

Welcome to our world, Determined.

It is not apparent from these boards but Younger Onset is a small percentage of those diagnosed. That is why this board is so important.
We often cannot tell if Aricept is working.  It may only be slowing down the progression, which is all it's intended to do.  Are you seeing a neurologist whose main practice is dementia?  A regular neurologist deals with many types of neurological problem. You want an expert.

 

Please go back to that support group and educate them.  

Iris L.
Posted: Sunday, March 4, 2018 10:17 PM
Joined: 12/15/2011
Posts: 15312


Hi, Tammy.  I attended a Family Caregiver Support Group for over one year as the only member who was a patient.  They were kind enough to allow me to participate.  In fact, a speaker from the Alzheimer's Association was the person who encouraged me to push my neurologist to take me seriously and to proceed with my evaluation.  That support group held monthly educational seminars and I learned a lot.  After a long while, I am now attending a support group for caregivers and PWDs.  Two of us patients attend without a caregiver.  It is hard to find a dedicated support group for PWDs.  Many use this group as an online support group.


Please come over to the Younger Onset Message Board.  It is more active.


Iris L.


Mimi S.
Posted: Monday, March 5, 2018 9:31 AM
Joined: 11/29/2011
Posts: 6223


Please post on both boards. We need more activity on this board.
surfergirl
Posted: Sunday, April 29, 2018 8:08 PM
Joined: 1/23/2012
Posts: 711


Hi Iris,
You helped me a lot in understanding my DH when he had ALZ. I do have a question for you . My husband did not have anosognosia  sp, he came home from the DR.s and said to me, the DR. told me I have ALZHEIMERS disease. He never resisted stopping driving or anything else, but he never said anything about it or had any concept of what it actually meant, he was on Aricept, all the other meds like namenda etc. made him sick and want to vomit, so he could not take them, he died on the 4th of July 2015 and until the end had no concept what his disease was.He was never in denial but it all just kind of happened over the course of about 13 years from RX to the end. So if a person does not have the denial of it all but does not know what the disease means is there a term or explanation for that?

Iris L.
Posted: Sunday, April 29, 2018 10:25 PM
Joined: 12/15/2011
Posts: 15312


Surfergirl, yes, the term is anosognosia.  Your husband was unaware of having dementia.  He might have known that something was different, but as you say, he was not aware of the full extent of the meaning of having dementia.  I am sorry for your loss.


Iris L.


roles reversed
Posted: Tuesday, May 1, 2018 7:20 AM
Joined: 3/30/2018
Posts: 2


I though this was the younger onset board. I am so confused about this supposed helpful site.
Iris L.
Posted: Tuesday, May 1, 2018 12:54 PM
Joined: 12/15/2011
Posts: 15312


Welcome, roles reversed. This is the I Have Alzheimer's board.  It's okay for you to post here.  It is just that the Younger Onset board is a bit more active.  

How are YOU doing?  

 

Iris L.
 
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