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lostcajun
Posted: Saturday, May 5, 2012 8:45 AM

I was recently diagnosed as having probable Early Onset Alzheimer's Disease (EOAD) and for the past six or seven years I have been in denial because I refused to acknowledge that I had a memory problem.

 

 


Mimi S.
Posted: Saturday, May 5, 2012 12:13 PM
Joined: 11/29/2011
Posts: 7027


Hi Lostcajun,

 

Welcome to our group. We're so glad you found us.

Do look for a support group for yourself and your wife. There are lots for your wife, but those for us are few and far between. Do, if you do find such people near you, do get together.

 

And yes, this disease sucks and you had much better plans for your retirement.

However, you are not likely to die today, nor tomorrow nor for a long time. 

 

So, Make the most of what you have. Do accentuate the positive.

 

However, do get your affairs in order while your wishes can be known. Do seek advice from an Elder Care Attorney.

 

Do think about how bills will be paid when you can no longer do that. Everything that I can pay automatically, either through my Visa or bank is done.

 

Do count your blessings. You were diagnosed while still in MCI. And so you have begun your meds early.

 

Do follow the rest of what several of us call The Best Practices:


Best Practices:

1. Take meds as directed.

2. Strenuous physical activity.

3. Strenuous mental activity.

4. Maintain or increase socialization.

5. Mediterranean Diet. I also take antioxidants and Omega 3. No smoking. Little alcohol. A bit of red wine is good.

I am much older than you are, have been diagnosed over five years and my cognition is still better than it was at the time of diagnosis.

 

You can google me: Mimi Steffen. Below is the one that has the message I want to give:

 

http://www.youtube.com/watch?v=Q2w9LG3hMl



 

Please join me as we keep our decline to a snail's pace.!!


Iris L.
Posted: Saturday, May 5, 2012 12:31 PM
Joined: 12/15/2011
Posts: 17899


Welcome to our online support group, lost cajun.  You are among friends here! 

  

Some of us have early stage EOAD, some are in mid stage, and some have cognitive impairment.  The boundaries of the stages are fluid, not fixed. 

  

I just turned 62 and I have been on Exelon patch for three years this month and on Namenda for three years in July.  My diagnosis is cognitive impairment not otherwise specified.  This means I don't meet all the criteria for AD but I do have cognitive impairment.  The neurologist and rheumatologist believe it is associated with lupus and antiphospholipid syndrome, a type of clotting disorder. 

  

We are proactive in our group.  We follow Best Practices, which were introduced by one of our members, Mimi S, to enhance our brain functions and to slow down the progression of disease.  Best Practices include taking the prescribed medications, eating a Mediterranean diet including omega 3 oils and antioxidants (lots of fruits and vegetables), exercise, keeping the brain stimulated with constant learning, and socialization.   

  

Some of us have begun to use aromatherapy.  There are several recent fascinating threads about aromatherapy on the Spouse/Partner board and more clinical threads on the Clinical Studies board. 

 

Mimi has an inspiring video that she did for PBS that I would like you to see.  Here is the link:  

http://www.youtube.com/watch?v=Q2w9LG3hMlU   

  

There is much to learn.  A good book to read is The Alzheimer's Action Plan by Dr. P. Doraiswamy and Lisa Gwyther MSW from Duke University.   

 

I hope I haven't overwhelmed you.  You have some time to make changes.  You are beginning a new phase of life that will be challenging.  And you can join us in doing everything we can to meet those challenges!  Since you already have cardiovascular disease you probably already have begun to make changes in your life. 

 

Please invite your wife to visit the Spouse/Partner board, where they discuss their particular concerns. 

 

Please come back and post whenever you have a question or concern, or even just to vent.  We are here for you.  You are  not alone. 

 

Iris L. 

  


Lisa428
Posted: Monday, May 7, 2012 10:52 AM
Joined: 12/5/2011
Posts: 795


Hi Lost Cajun,

 

Welcome to the alzconnected Message Boards.  I'm sorry about your diagnosis but I am very glad you've found us.

 

The beginning of this disease is really tough!  I remember feeling anxious, angry, depressed, scared and very lost!  I still feel some of those occasionally.  I too have EOAD.  I was diagnosed @ age 53 now I am 58.

 

You have been given some really godd advice here.  Please, try to slowly absorb all this and get started with Best Practices including meds.

 

We do have a toll free 24/7 Helpline@800-272-3900 if you want to speak with someone.  They are very helpful and have lots of resources for you.

 

You may, also, want to contact your local AD Association for additional help and advice.

 

Remember, you are NOT alone.  We are here.

 

Good Luck.

 

Peace and Hope,

Lisa


elvisgirl01
Posted: Monday, May 7, 2012 6:29 PM
Joined: 5/7/2012
Posts: 97


Hi all, I am writing this on behalf of Lostcajun.  His account has been deleted due to technical problems and is working trying to get back online.  Lostcajun says:  "Thank all of you for the wonderful advice.  I am already doing most of the things that you all suggested.  To:  Iris L:  I also have been placed on Namenda and Exelon patches and have been on them approximately one year.  As soon as I can get things straightened out with the Administrative folks, I will be talking to you again.

 
Mimi and Iris L, thanks for the you tube link.  It was very informative.
 
Lostcajun 

Iris L.
Posted: Monday, May 7, 2012 8:47 PM
Joined: 12/15/2011
Posts: 17899


Lost cajun and elvisgirl, I'm sorry about the technical issues.   

 

Please stay in contact and post often. 

 

Iris L.