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I have EOAD/Younger onset Alzheimer's
nwlegaleagle
Posted: Tuesday, December 13, 2011 9:53 PM
Joined: 12/6/2011
Posts: 3326


Mimi S. wrote:

Do I understand you to say you were fired because you had the gene? Or because you were already diagnosed?

 

Neither, Mimi. I was honest with my employer that I had genetic testing done after a 30 second moment where I didn't know where I was (I was leaving my daughter's house). I have always known I had a 50/50 chance of having the gene. Because I was a public defender, the director told me he had to let me go saying if I made a mistake in a client's case, the county could get sued because he knew I had the gene. All of my evaluations were excellent and I made no mistakes with consequences. No clients ever complained, and at the time I was successful as president of the Bar Association. But instead of fighting, I walked away. I'm still ambivalent as to whether I did the right thing or not, but it doesn't really matter. I'm a firm believer that everything happens for a reason, and it's up to me to find the silver lining. After leaving, I traveled to many places including Peru and India and haven't looked back.

 

nwlegaleagle
Posted: Tuesday, December 13, 2011 9:58 PM
Joined: 12/6/2011
Posts: 3326


Mimi, In my response, I meant to include an "Amen" to you for the rest of your post.
Lisa428
Posted: Tuesday, December 13, 2011 10:09 PM
Joined: 12/5/2011
Posts: 795


dear ffwife,

I do understand your feelings.  I felt that way myself about a year or so ago.

my family especially my daughter freaked out!!!!

I found myself a good psychiatrist and a good therapist.   They both helped me.  One with the right medications and the other with some good talk therapy.

I, too, was dx,d @53.  It took me several years to come to terms with this horrible disease.  aLso, a lot of hard work in therapy facing fears, frustrations, anger and depression.

I wish you would consider getting help.

thinking of you.

Peace and Hope,

Lisa 

 


Iris L.
Posted: Thursday, December 15, 2011 1:47 AM
Joined: 12/15/2011
Posts: 18513


ffwife wrote:

 I cannot be a burden on my husband or family and do not want to live in the end stages of AD.

 

 

 

FFwife, I read a book that stated the cause of death in stage 6 AD pts was cardiovascular--in other word, a heart attack or congestive heart failure.  The same as 40-50% of the population.  If an AD patient reaches stage &, the cause of death is likely to be pneumonia or other septic condition or AD.

 

So the chances are about 50/50 that you will succumb like the rest of Americans.

 

Iris L.

 



Iris L.
Posted: Thursday, December 15, 2011 2:04 AM
Joined: 12/15/2011
Posts: 18513


nwlegaleagle wrote:
,. But instead of fighting, I walked away. I'm still ambivalent as to whether I did the right thing or not, but it doesn't really matter. 
 
 After leaving, I traveled to many places including Peru and India and haven't looked back.
 
Welcome to our online support group, mwlegaleagle. 
 
I was Chief of Pediatrics for my small medical group.  In 1987 I developed amnesia, and chose to leave my pediatric practice on my own.  I thought it was "burnout".   I had received suspicious evaluations from colleagues and from a few patients. I had no idea what they were talking about.  I still don't know what their complaints were about. .  No one understood.  My medical colleagues and medical administration chose to believe that I, a respected pediatrician, would be deliberately disruptive and uncooperative, rather that believing that I had a neurological illness. .  My internist didn't understand either.  My life has been downhill since then--1987.
 
Iris L.
former Chief of Pediatrics
currently a memory loss patient
 


Ttom
Posted: Thursday, December 15, 2011 10:59 AM
Joined: 11/29/2011
Posts: 182


Iris L. wrote:
wrote:

 Welcome to our online support group, mwlegaleagle

 
I was Chief of Pediatrics for my small medical group.  In 1987 I developed amnesia, and chose to leave my pediatric practice on my own.  I thought it was "burnout".   I had received suspicious evaluations from colleagues and from a few patients. I had no idea what they were talking about.  I still don't know what their complaints were about. .  No one understood.  My medical colleagues and medical administration chose to believe that I, a respected pediatrician, would be deliberately disruptive and uncooperative, rather that believing that I had a neurological illness. .  My internist didn't understand either.  My life has been downhill since then--1987.
 
Iris L.
former Chief of Pediatrics
currently a memory loss patient

 

I know that you were replying to  nwlegaleagle on this but I reposted it for clarity. Sorry to hear of your problem Iris and I can emphize.
 


nwlegaleagle
Posted: Thursday, December 15, 2011 12:02 PM
Joined: 12/6/2011
Posts: 3326


Wow, Iris. Have you had memory loss since 1987? You are doing great? What are you doing to care for yourself? Mediterranean diet, supplements, exercise? Myriam


Mimi S.
Posted: Thursday, December 15, 2011 3:05 PM
Joined: 11/29/2011
Posts: 7027


Hi all, especially Miriam

 

Wow, Travelling all over the world does have rewards. After I retired I did a lot of Elderhosteling.

 

Maybe your legal knowledge can be of help to people on these boards.

 

And I have great news: got my 5 year neuro. results this morning. Some up a little, some down a little, no big changes. However, at my first neuro, some scores were in the bottom quartile, which is why he could not diagnoses Mild Cognitive Impairment. Now there are absolutely no scores way down.

 

He says I'd make an excellent case study. Then he says, but most people don't do all the things I recommend. You do.  In addition he says that, overtime, I've developed excellent coping skills. 

 

So a very nice Christmas present. Much better than five years ago when my diagnosis was disclosed to my kids at Christmas time.  

However, I'm not Early Onset. There is nobody on the other site, so I but in here.


nwlegaleagle
Posted: Thursday, December 15, 2011 3:23 PM
Joined: 12/6/2011
Posts: 3326


Mimi S. wrote:

And I have great news: got my 5 year neuro. results this morning. Some up a little, some down a little, no big changes. However, at my first neuro, some scores were in the bottom quartile, which is why he could not diagnoses Mild Cognitive Impairment. Now there are absolutely no scores way down.

Awesome, Mimi! But how did you do it? What are you doing right?
Myriam

Lisa428
Posted: Thursday, December 15, 2011 4:09 PM
Joined: 12/5/2011
Posts: 795


Mimi,

 

Congratulations on your good news.  That is fantastic!!

 

Mimi,  since you and I served on the Early Stage Advisory Board in 2007 or 2008 (can't remember) I knew you were a very special, determined woman.

 

Some of that, I hope, has rubbed off on me.

 

Keep up the good work.  Thanks for all your help!

 

Happy Holidays!

 

Peace and Hope,

 

Lisa


Mimi S.
Posted: Thursday, December 15, 2011 7:28 PM
Joined: 11/29/2011
Posts: 7027


Hi Myiram,

The neuro-psych guy and I had a lengthy conversation about that today. I told him I'd love to be part of a study that answers that question: why me? Why am I improving? It's not supposed to happen.

 

He said, he questioned himself about his original diagnosis. Then we both go back five years. And yes, I know what I was like then. Some of lowest scores were in the 25th percentile. They would have been lower, but I was forced to make a choice  with four possible answers. I didn't have the foggiest notion what was going on, and scored exactly random.  

He thought I would be a perfect case study.

 

But then he says, that I do EVERYTHING I'M SUPPOSED TO DO. People just don't do that.  He also said that I have developed superb coping skills. Tests that I aced, I explained my strategies.  Many of them I would not have done well without using strategies.

A few other researchers I've questioned about myself say the same thing. What's happening to you is exactly what should happen to people if they were diagnosed as early you were and stuck to the Best Practices as strictly as you do.

 

So,  rejoice and I'm open to anyone's thoughts.

 

And that icon at the top left to enlarge the print did nothing. I used  command +.


Ttom
Posted: Friday, December 16, 2011 7:20 AM
Joined: 11/29/2011
Posts: 182


Mimi S. wrote:

 And I have great news: got my 5 year neuro. results this morning. Some up a little, some down a little, no big changes. However, at my first neuro, some scores were in the bottom quartile, which is why he could not diagnoses Mild Cognitive Impairment. Now there are absolutely no scores way down.

 

He says I'd make an excellent case study. Then he says, but most people don't do all the things I recommend. You do.  In addition he says that, overtime, I've developed excellent coping skills. 

 

So a very nice Christmas present. Much better than five years ago when my diagnosis was disclosed to my kids at Christmas time.  

Congratulations Mimi! You are my hero! I try to live by your Best Practices model which I've pasted below.
 

Helpful hints for slowing the progression:

  1. Get Early detection
  2. Start the required drug therapy
  3. Avoid stress
  4. Mediterranean diet with antioxidants and Omega 3
  5. Mental and physical exercise

 


SnowyLynne
Posted: Tuesday, December 20, 2011 12:12 PM
Joined: 12/1/2011
Posts: 29


I still have my drivers license,they don't take it away in

texas with AD dx.When the time comes I won't drive,I'll know.I rarely  drive now mainly because I need a wheelchair,oxygen tanks(portable)It's a pain to do alone do hubby does all the driving,thank heaven.If I want to go to the lake it's just down the road from our home so I ride my scooter down there & around the lake,lovely experience.....When will I not know anyone? who knows? I'm  still with the program,after 14 years........


Lisa428
Posted: Wednesday, December 21, 2011 12:24 PM
Joined: 12/5/2011
Posts: 795


dear Snowy,  


You are an inspiration!



I hope I can do as well.



Happy Holidays!


Peace and hope,


Lisa


Iris L.
Posted: Thursday, December 22, 2011 2:10 AM
Joined: 12/15/2011
Posts: 18513


Mimi S. wrote:

Hi Myiram,

The neuro-psych guy and I had a lengthy conversation about that today. I told him I'd love to be part of a study that answers that question: why me? Why am I improving? It's not supposed to happen.

 

He said, he questioned himself about his original diagnosis. Then we both go back five years. And yes, I know what I was like then. Some of lowest scores were in the 25th percentile. They would have been lower, but I was forced to make a choice  with four possible answers. I didn't have the foggiest notion what was going on, and scored exactly random.  

 

He thought I would be a perfect case study.

 

But then he says, that I do EVERYTHING I'M SUPPOSED TO DO. People just don't do that.  He also said that I have developed superb coping skills. Tests that I aced, I explained my strategies.  Many of them I would not have done well without using strategies.

 

A few other researchers I've questioned about myself say the same thing. What's happening to you is exactly what should happen to people if they were diagnosed as early you were and stuck to the Best Practices as strictly as you do.

 

So,  rejoice and I'm open to anyone's thoughts.

 

And that icon at the top left to enlarge the print did nothing. I used  command +.

 

 

 

 

Thank you Mimi, CTRL + did enlarge my print.  Now why couldn't Admin have told us that?

Iris L.


JAB
Posted: Thursday, December 22, 2011 12:50 PM
Joined: 11/30/2011
Posts: 740


I think they're more focused on fixing the glitches in the site software than trying to explain what your computer might be able to do.

 

They HAVE managed to get rid of the tiny print that was driving everyone nuts.  Sooner or later, those letters up in the corner will work.


Lisa428
Posted: Wednesday, December 28, 2011 9:19 PM
Joined: 12/5/2011
Posts: 795


Hi to All,

Just wanted to say Happy New Year to all my cyber buddies (old and new)!

I hope everyone enjoyed their Christmas (as best as you could).

I sure hope everyone is well.  

I want to thank each and every one of you for all the support you've shown me.  I couldn't do it without you!

Have a happy and safe New Year!

Peace and hope,

Lisa


Mimi S.
Posted: Thursday, December 29, 2011 10:04 AM
Joined: 11/29/2011
Posts: 7027


Hi Iris, 

The Administration probably didn't say anything because it's a standard feature on computers. Those of us with poor eyesight use it constantly.


Michigan Guy
Posted: Thursday, December 29, 2011 3:38 PM
Joined: 12/28/2011
Posts: 5


Hi Lisa:

I hope this e-mail finds you in good spirits.We have a choice you know to think "poor Me". Why did I have to develop such a disease. Or we can think that We will make the best out of our life . I see you are making the best of your life. That is wonderful you are a peer volunteer.

 

I was dianosed with Dementia in Mrch of 2011. I thought I was just given a death sentence when my neorologist told me the news. But then as the news sunk in, I decied to make the best of my life.

 

I have early state dementia. I take nemenda and wear the exelon patch. The "sundowners syndrome" was causing me lots of discomfort. My neauroligis prescribed Neurontin and I am not bothered by the "sundowners syndrome any

any longer.

 

I will close now Lisa. I hope to hear from you. All The Best!

"Michigan Guy."


Iris L.
Posted: Thursday, December 29, 2011 4:00 PM
Joined: 12/15/2011
Posts: 18513


Hi, Michigan Guy, I see you've found us on this site.  I welcomed you on the other board, but I'll welcome you again here.  Welcome!  Please keep coming back and keep posting.  Do you have any questions we might be able to answer for you?

Iris L.


SnowyLynne
Posted: Friday, December 30, 2011 4:08 AM
Joined: 12/1/2011
Posts: 29


I was diagnosed 14 years ago at age 57,was put right on drugs at that time....Aricept quit working after 4 years,I asked to be  put on Galantamine that was 10 years ago,still doing very well.

Last night Larry(hubby) had to call hospice as i was having a hard time breathing due to COPD.A nurse came out got me on steroids & extex Xanax,& In a little while i started breathing better..COPD  will be my killer,not AD/dementia.....

Right now I'm better,& a nurse will be her in the morning & the new medication regimine will be implemented for the rest of my life......Hey if it works I'm happy.....

About an hour after the nurse left i was able to eat the supper Larry brought me from our local cafe............


Beverly
Posted: Friday, January 6, 2012 5:06 PM
Joined: 1/6/2012
Posts: 1


Hi Lisa,

 

This is my first time posting on this message board.  My husband was diagnosed 4 years ago with eoad - he is 52 now.  We have 5 children. He has alot of temper tantrums do to frustration I guess.  Do you have that problem?


JAB
Posted: Friday, January 6, 2012 7:34 PM
Joined: 11/30/2011
Posts: 740


Hi, Beverly, welcome to the boards.

 

I've learned a lot that has helped me understand my husband, from talking with the wonderful people on this forum and the "I Have AD" forum.

 

I'd like to invite you to also join us on the Caregiver Forum, and on the Spouse/Partner Caregiver Forum, third and fourth forums on the Message Boards index.  The Caregiver Forum is far and away the largest and most active.  It is for anyone with any relationship to a loved one with dementia.

 

The Spouse/Partner Caregiver Forum is smaller and more intimate.  It gives us a good place to talk about issues that are unique to those of us caring for spouses/partners.  We have many members whose spouses/partners have EOAD ... but my gosh, your husband was so very young when he was diagnosed.  How sad.  How old are your children?