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I have EOAD/Younger onset Alzheimer's
Lisa428
Posted: Tuesday, December 6, 2011 11:48 AM
Joined: 12/5/2011
Posts: 795


Hi to All,

 

I am reaching out to all the people with EOAD, Younger-Onset AD and their Caregivers.

 

My name is Lisa.  I was diagnosed @ 54.  That was 4years ago.  I take several AD meds.  I have, also, participated in 2 clinical trials.

 

I have no partner or spouse.  Sometimes, I get kinda lonely.  These Message Boards are wonderful for me.  Keeps me in touch and gives me lots of support.

 

I am a Peer Volunteer.  I enjoy it very much.  I like helping others.

 

How about you??  Are there other like me out there?  I'd love to talk via Message Boards.

 

Anyone????

 

Peace and Hope,

 

 


Ttom
Posted: Tuesday, December 6, 2011 12:04 PM
Joined: 11/29/2011
Posts: 182


Hi Lisa, you are indeed a valuable Peer Volunteer! Our management needs to adjust your Avatar!

.

I'm super happy that you were able to make it ove here. I know that you had problems due to your AD and some personal issues that have arised.

.

Please check out the "Groups" and help me with them as possible.

 

Later,

Tom


nwlegaleagle
Posted: Tuesday, December 6, 2011 5:44 PM
Joined: 12/6/2011
Posts: 3326


Hi! I just joined and wanted to introduce myself. Guess I'm a 'tweener: not really a Y-O AD because I was diagnosed at age 63, but inherited a gene from my father who showed symptoms at 54. Other family members are beginning to show symptoms.

 

Had to quit my job as an attorney, so I've been traveling and reading lots of James Lee Burke mysteries. Up until 3 months ago, I've been very open and positive, but as of a couple of months ago I've become depressed. Am dealing with it.

 

Have children, grandchildren, siblings, friends. Love life.

 

I search the press hoping to hear of something that at least stops the progression.

 

MM 


Ttom
Posted: Tuesday, December 6, 2011 6:44 PM
Joined: 11/29/2011
Posts: 182


nwlegaleagle wrote:

Hi! I just joined and wanted to introduce myself. Guess I'm a 'tweener: not really a Y-O AD because I was diagnosed at age 63, but inherited a gene from my father who showed symptoms at 54. Other family members are beginning to show symptoms.

 I've been very open and positive, but as of a couple of months ago I've become depressed.

 

MM 

Dear nwlegaleagle (MM), 

Hello and Welcome! We are happy you found us but sad about what has brought you here. Since you were diagnosed prior to age 65 you will always have YOAD or EOAD, whichever term you choose. I envy you about being able to read novels. I haven't been able to read more than a sentence or two together in a long time. Keep it up as long a possible.

Several of us on theis site have had professional careers. I was a Sr. Engineer for a Fortune 100 company.

Glad to have you with us and please come back soon and often!

 

My disclaimer:
I'm not a professional in this area, only a person with AD that cares about others and can express myself yet. Diagnosed at age 58 in Stage 5, now appear firmly in Stage 4 for now- wonderful meds! I 'm 62 now..
.....................................................................................................................
We encourage you to call the Alzheimer's Association's 24/7 Helpline1-800-272-3900 .

Ask for a Care Consultant who will be available
 

LATER... Tom

 

Helpful hints,

  1. Get Early detection
  2. Start the required drug therapy
  3. Mediterrian diet with Omega 3
  4. Mental and physical exercise

 


nwlegaleagle
Posted: Wednesday, December 7, 2011 12:32 PM
Joined: 12/6/2011
Posts: 3326


Thank you, Tom, for the welcome!  I have a question for the group regarding time. I understand the answer may be different for different reasons/people. How long can one live independently? I first noticed symptoms a year and a half ago. No one ever raised a concern with me, not my employer, clients, judges or other attorneys, but I had my DNA tested and the PRSN 1 gene was found. Am I in the ballpark believing I can live alone for at least 5 years?
Ttom
Posted: Wednesday, December 7, 2011 3:36 PM
Joined: 11/29/2011
Posts: 182


It is anybodys guess as to how long we can stay independent!! I was diagnosed in June of 2008 after 2 1/2 years of testing. At that time I was a mess, getting lost while driving, going round and round in circles trying to figure out what to do next and the whole nine yards. When I was diagnosed the doctor started me out on Aricept and an anti-depressant. Namenda was added later and even later Seroquel was added. Since then I have moved to Aricept 23 and the dosage of Seroquel has been adjusted to 200mg.

 

Nobody ever noticed any symptoms until my wife did. She is a professional in Human Resources and she asked me to have my doctor evaluate me. Before being diagnosed I was working with professionals around the world as a Sr. Engineer. Had 'em all faked out and life was good!

.

The state revoked my drivers licence when one of my doctors informed them that I had dementia. Currently I'm contemplating trying to get it back.

.

After the almost 4 years I feel much better than before. Plus I want to drive and would feel comfortable with the responsibility!

 

 

My disclaimer:
I'm not a professional in this area, only a person with AD that cares about others and can express myself yet. Diagnosed at age 58 in Stage 5, now appear firmly in Stage 4 for now- wonderful meds! I 'm 62 now..

We encourage you to call the Alzheimer's Association's 24/7 Helpline1-800-272-3900 .

Ask for a Care Consultant who will be available
 

LATER... Tom

 

Helpful hints,

  1. Get Early detection
  2. Start the required drug therapy
  3. Mediterrian diet with Omega 3
  4. Mental and physical exercise

 


Jan / Mina
Posted: Wednesday, December 7, 2011 8:51 PM
Joined: 12/5/2011
Posts: 2


For many of us the initial diagnosis -mine, dementia of the Alz. type, changes as we progress. I don't think there is any right answer to how long we can be independent. But I personally have had my diagnosis for 16 years, and am living well,. I know personally of 10 others who have also been diagnosed for 15+ years. Many have overcome additional obsticles along the way, one a personal hero of mine also survived a heart attack , fought blindness and is now back to her love, supporting herself teaching. Now instead of a classroom she teaches on the internet. Good meds, positive lifestyle with a purpose to each day, a beginning to the next chapter to our lives!

 

Jan

May you always be blessed with enough

 


Mimi Steffen
Posted: Wednesday, December 7, 2011 10:01 PM
Joined: 11/29/2011
Posts: 7035


Hi MM,

Glad to make your acquaintance.

I firmly believe that my pursuit of the Best Practices had led to my current status of stability with my AD.

1. Take meds as directed. 

 

2. This may be the most important, Strenuous physical activity. I was at a conference shortly ago. It was said that by physical activity it is now proved that brain cells can be regenerated. So, my thinking goes: if the AD is taking away the brain cells and physical activity can rebuild them, then what to do is obvious. And that is what I've been doing for the past five years. I'm in the process of a five year neuro-psych check up. I don't hear the results until next week, but had three hours of tests today.Still think I'm ahead of where I was at diagnosis.

3. Strenuous mental exercise.

 

4. Mediterranean diet. I also take antioxidants and Omega 3.

5. Lots of socialization.

Glad to meet you!

I do like the new feature of knowing something about the posters. Our story, as Peer Volunteers has always been available.


Mimi Steffen
Posted: Wednesday, December 7, 2011 10:14 PM
Joined: 11/29/2011
Posts: 7035


Hi again MM,

 

As I stated above, I've been diagnosed five years. I still live by myself. I have someone in to clean the house because of another neurological condition that makes me tire easily (myasthenia gravis).  I don't do the lawn or shovel snow. I do have a small garden. I still drive, locally. Had to drive in the driving rain and dark coming home this afternoon. I shut off the radio and came home the way with least traffic, but longer. Got here safely.  I live near Scranton. I'll go there if I know my way in the daylight. Getting home in the dark is OK, unless there are several unfamiliar sports. I do not drive in NYC, but do drive to a daughters in Jersey.

 

I do have an Assisted Living Residence picked out and my name is on their list. I take so many meds, so many ties a day, that may be the reason for the move. But so far, I'm OK. 

So, more power to you.

I do hope you get active in your local Alz. Chapter. They need people with the disease who can speak up to advocate.  And do check to see if there is a support group for you in the area.  If not, try to organize one. This spot is great, but it's also nice to speak one on one.

 

And I have convinced a lot of people to go to a great local diagnostic place. As you know, too many well meaning local GP, botch the diagnosis.

 

And this is bragging, but I am so elated. I just had a book of mine published and it's doing great selling. Another is in the pipeline. ..doing the final polishing.  And they are not about my AD journey.


Lisa428
Posted: Thursday, December 8, 2011 12:28 AM
Joined: 12/5/2011
Posts: 795


Dear MM,

 

Hello and Welcome to the AD/Related Dementia's Message Boards.  I am sorry to hear of your diagnosis but I am very glad you've found us.

 

You've been given some good answers.  I hope they help.

 

People with dementia differ greatly especially when it comes earlier in life as do their symptoms and stages.

 

I hope you find great support here as I have.  There are so many wonderful, helpful people here.

 

FYI  We do have a 24/7 Toll free Helpline available to everyone 800-272-3900.  So, if you ever feel like talking with someone in person, please call it!

 

Take Care of yourself.  Please, come back to let us know how you are doing.

 

Peace and Hope,

Lisa


Lisa428
Posted: Thursday, December 8, 2011 12:39 AM
Joined: 12/5/2011
Posts: 795


Hello Jan/Mina,

 

Welcome to the AD/Related Dementia's Message Boards.  I'm sorry about your diagnosis but I am glad you've found us.

 

Thank you for your comments and sharing with mm.

I'm sure they will help her.

 

Wow,  you've been diagnosed for 16 years and still doing well.  That's incredible!

 

May I ask what kind of Dementia you have?  Is it EOAD or some other kind/type of dementia??

 

I am currently on an Exelon patch and Namenda as well as participating in a clinical trial.

 

Please, come back to let us know how you are doing.

 

Good Luck.

 

Peace and Hope,

Lisa

 

 


Tonya2
Posted: Thursday, December 8, 2011 8:46 AM
Joined: 12/8/2011
Posts: 33


Welcome MM

Congratulations Mimi on your books.....

 


Ttom
Posted: Thursday, December 8, 2011 10:14 AM
Joined: 11/29/2011
Posts: 182


Tonya2 wrote:

Welcome MM 

Congratulations Mimi on your books.....

 

And a very cordial welcome to you Tanya!
 


Tonya2
Posted: Thursday, December 8, 2011 11:47 AM
Joined: 12/8/2011
Posts: 33


Ty good to be here!
Ttom
Posted: Thursday, December 8, 2011 1:03 PM
Joined: 11/29/2011
Posts: 182


Hello Tanya, I see by your story that you a young and have Lewy Body dementia. Just to let you know that we understand how it is be be diagnosed sooo early in live and there are others on this site in your situation. You're not alone girl!
nwlegaleagle
Posted: Thursday, December 8, 2011 4:23 PM
Joined: 12/6/2011
Posts: 3326


Thank you all!! Great to hear that more than 5 years of independence is possible if one takes their meds correctly, exercises, eats right, etc. After experiencing my father and 8 other of his siblings go into AD (PRSN 1 gene), I have decided I will not continue to live when I get to a point that I need to depend on another person to lead me by the hand, etc. I LOVE life and am placing my hope on a cure, or at least something that stops the progression.

 

I attend monthly meetings of EOAD/Younger onset in Seattle. I'll be moving to Seattle from a very rural community about an hour away. There are so many more options living in a city...particularly one that has a good transit system.

 

Has everyone noticed more and more characters with AD in television and movies?

 

Myriam 


Ttom
Posted: Thursday, December 8, 2011 5:17 PM
Joined: 11/29/2011
Posts: 182


stress is a major thorn in the progression factor

nwlegaleagle wrote:

Thank you all!! Great to hear that more than 5 years of independence is possible if one takes their meds correctly, exercises, eats right, etc.

 

Has everyone noticed more and more characters with AD in television and movies?

 

Myriam 

Glad to meet you Myriam,

Not realy noticing any more charactors but I don't really watch much TV other than news. I want to inform you that stress is a major factor in the progress factor. Avoid that like it is your worst enemy!.

 

My disclaimer:
I'm not a professional in this area, only a person with AD that cares about others and can express myself yet. Diagnosed at age 58 in Stage 5, now appear firmly in Stage 4 for now- wonderful meds! I 'm 62 now..

We encourage you to call the Alzheimer's Association's 24/7 Helpline1-800-272-3900 .

Ask for a Care Consultant who will be available
 

LATER... Tom

 

Helpful hints,

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

Fabio
Posted: Friday, December 9, 2011 10:59 AM
Joined: 12/9/2011
Posts: 2


I would love more information regarding people that have been diagnosed for more than 15 years. My spouse has been symptomatic for 16 years. I have been told that it could not be a progressive dementia because the disease would have run its course long before that amount of time. Any information on this topic would be appreciated.
Lisa428
Posted: Friday, December 9, 2011 2:10 PM
Joined: 12/5/2011
Posts: 795


Dear Fabio,

 

Hello and Welcome to the AD/Related Dementia's Message Boards.  I'm sorry for what brings you here but I am very glad you've found us.

 

Personally, I have not heard of a dementia that is not progressive.  Of course, that doesn't mean it doesn't exist.

 

JAB and a few others know much more about all that.  I think i will let them respond.

 

Again, Welcome to OUR family.

 

Peace and Hope,

Lisa

 


JAB
Posted: Saturday, December 10, 2011 12:07 PM
Joined: 11/30/2011
Posts: 740


Hi, Fabio.  Alzheimer's patients have been known to live for 20 or more years after diagnosis.  We had one caregiver on the "old" boards whose husband stayed in the mild stage of AD for that long before progressing.

 

However ... if her symptoms are very mild, it's possible that she has "mild cognitive impairment (MCI)" rather than a dementia.  And a pretty high percentage of MCI patients never progress to dementia.  See:

http://www.alzcompend.info/?p=225


JAB
Posted: Saturday, December 10, 2011 12:17 PM
Joined: 11/30/2011
Posts: 740


nwlegaleagle wrote:
I'll be moving to Seattle from a very rural community about an hour away. There are so many more options living in a city...particularly one that has a good transit system.

 

Myriam 

Hi, Myriam.  I wholeheartedly endorse Mimi's "Best Practices".  Do whatever you can to follow them.

 

Also, there's a new, prescription-only medical food, Axona, that you might want to consider trying.  Many caregivers (me included) have found it to be beneficial for our loved ones.

 

Another thing to consider:  would you want to participate in a clinical trial?  There are some very promising new drugs in the pipeline, and one way to access some of them before they receive FDA approval is to be in a clinical trial.

 

And there is a trial of a very interesting drug recruiting or about to begin in Tacoma:

http://clinicaltrials.gov/ct2/show/NCT01343966

 

Lisa428 is in this trial.



Ttom
Posted: Saturday, December 10, 2011 3:32 PM
Joined: 11/29/2011
Posts: 182


Hey Miriam,

 

Thinking a bit deeper I realized you might be intersested in some other forms of help I would strongly suggest that you complete a duable power of attorney. But I'm pretty sure that you are more aware of that than myself.

 http://www.alznyc.org/caregivers/legalplanning.asp 

Then there is SSDI. People with dementia atuomatically qualify now.

http://www.ssa.gov/ 

http://www.alz.org/trialmatch 

http://www.alz.org  


Ttom
Posted: Saturday, December 10, 2011 3:57 PM
Joined: 11/29/2011
Posts: 182


I just learned that one of our members from the old site has lived 15 years since the diagnosis. I can attest that she is doing very well. Bellow is her post. Hope she joins us here soon.

 

SnowyLynne  
      Posted December 10, 2011 09:01 AM  
I was dx at age 57,am 72 now still doing very well..After 4 years Aricept quit,so I asked for Razadyne,now the generic Galantimine......Have no time to ponder the why's i just keep going,enjoying the life i have left.....


never sacrifice who you are just because someone has a problem with it.....


RJ
Posted: Saturday, December 10, 2011 6:03 PM
Joined: 12/10/2011
Posts: 2


I'm in a very high stress job position and I'm finding that I am having a lot of trouble in my job. I don't know how much longer I can fake it. Does stress really progress the disease?
Lisa428
Posted: Saturday, December 10, 2011 11:03 PM
Joined: 12/5/2011
Posts: 795


Dear RJ,

 

Hello and Welcome to the New AD/Related Dementia's Boards.  I'm sorry you are having problems at work but I am glad you've found us.

 

STRESS is one of our worst enemies (people with dementia).  It can definitely make dementia worsen!

 

Have you been diagnosed with dementia?

 

Do you take any medications for it?

 

Please, write back to share more about yourself.

 

We'd really like to help.

 

Peace and Hope,

Lisa


Ttom
Posted: Sunday, December 11, 2011 9:59 AM
Joined: 11/29/2011
Posts: 182


RJ wrote:
I'm in a very high stress job position and I'm finding that I am having a lot of trouble in my job. I don't know how much longer I can fake it. Does stress really progress the disease?

Hello RJ and welcome to the message board! Glad to meet you but very sorry about what brings you here. Have you been medically evaluated and diagnosed with dementia?

 

Stress is our enemy. Eliminate or run away from it as soon as possible! After getting yourself diagnosed and starting the required durg theropy, stress can be your nemisis.

My disclaimer:
I'm not a professional in this area, only a person with AD that cares about others and can express myself yet. Diagnosed at age 58 in Stage 5, now appear firmly in Stage 4 for now- wonderful meds! I 'm 62 now..

We encourage you to call the Alzheimer's Association's 24/7 Helpline

1-800-272-3900 . Ask for a Care Consultant who will be available

 


LATER...


 


Geegee
Posted: Sunday, December 11, 2011 3:03 PM
Joined: 11/29/2011
Posts: 514


Welcome everyone!
I have been reading the new message boards to keep up with the news while I could not use my computer here.  I'm so happy to see a number of current members trying out the new Boards.
I've not been able to post...long story actually but my computer is now compatible and I'm good to go!  Hi Tonya, it's great to see you over here.  Hope you are recovering.
 
MM,  Jan,  &  RJ,  we're so glad  you made your way to our Message Boards.  I'm sorry that you have a diagnosis of Alzheimer's or dementia.  Like Myriam, I was diagnosed with Alzheimer's at 63.  This Feb. will be 2 years.  
 
Great medication, positive attitude, exercise, proper diet have contributed to my good function.  That's my opinion!  I refused to lie down and curl up into a little ball and let the world go by.
 
That is the attitude of the survivors living and writing to each other on these Boards. We are glad you are here and hope you come back often.  Share you experiences so we can grow and learn to continue our fight.
Glad to talk again.
 
 
 
 

ffwife
Posted: Sunday, December 11, 2011 4:19 PM

Hi. it is nice? I think to see someone else that has a plan to end their life with diginity when the time comes. I have watched all 4 aunts and 3 uncles sucomb to AD. My mom is the only sibling not affected by AD. I carry the APOE  + gene so am at a higher risk of developing AD. right now my diagnosis is Mild cognitive impairment and depression. I have expressed my thoughts on this to others on the board and as you would expect did not get any support. I cannot be a burden on my husband or family and do not want to live in the end stages of AD.

 


Lisa428
Posted: Monday, December 12, 2011 11:05 PM
Joined: 12/5/2011
Posts: 795


Dear FFwife,

 

Glad to see you here on the New boards.

 

I'm sorry you are feeling depressed and scared.  Perhaps you should speak with your doctor?

 

I'm sorry you feel unsupported on the old boards.  I know you posted there as did I.  You seemed to get some responses and support.

 

If you are feeling this down, you should talk with your therapist/psychiatrist about your suicidal thoughts and to see if you need your meds tweaked.  Maybe that's the problem?  Please, call him/her today! And call the 24/7 toll free Helpline @800-272-3900.

 

Are you able to do any physical exercise?  That helps too.  Can you join an AD/Related dementia's support group?  They are very helpful.  You can attend with a diagnosis of MCI.

 

Please, take care of yourself.

 

Let us know how you are doing.

 

Peace and Hope,

Lisa

 

 


Ttom
Posted: Tuesday, December 13, 2011 8:45 AM
Joined: 11/29/2011
Posts: 182


ffwife wrote:

Hi. it is nice? I think to see someone else that has a plan to end their life with diginity when the time comes. I have watched all 4 aunts and 3 uncles sucomb to AD. My mom is the only sibling not affected by AD. I carry the APOE  + gene so am at a higher risk of developing AD. right now my diagnosis is Mild cognitive impairment and depression. I have expressed my thoughts on this to others on the board and as you would expect did not get any support. I cannot be a burden on my husband or family and do not want to live in the end stages of AD.

 

I will attach here a copy of my disclaimer that includes helpful hints as collected over the years.

 

 

 

My disclaimer:
I'm not a professional in this area, only a person with AD that cares about others and can express myself yet. Diagnosed at age 58 in Stage 5, now appear firmly in Stage 4 for now- wonderful meds! I 'm 62 now..

We encourage you to call the Alzheimer's Association's 24/7 Helpline

1-800-272-3900 . Ask for a Care Consultant who will be available

 

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

 


LATER... Tom

 

 

 

 

 

 

 


nwlegaleagle
Posted: Tuesday, December 13, 2011 12:52 PM
Joined: 12/6/2011
Posts: 3326


Thank you, Geegee, for the welcome. It was great to find this Board. Haven't gone into the old boards, yet. This one has been very helpful. 

 

FFwife, I'm with you. I'm getting a plan in place for when the day comes I can no longer live independently/care for myself. I watched my mother care for my father and one of my several aunts and uncles aunts with AD. No way I want to go there.

 

Yesterday, I attended the monthly meeting of the AD Assn early onset group in Seattle. It's a great group and I learn so much from them, in addition to the friendship and camaraderie. Hope you all have the same access.

Myriam

 


Ttom
Posted: Tuesday, December 13, 2011 1:05 PM
Joined: 11/29/2011
Posts: 182


nwlegaleagle wrote:

Thank you, Geegee, for the welcome. It was great to find this Board. Haven't gone into the old boards, yet. This one has been very helpful. 

  

Myriam

 

Myriam,

 

Our www.alz.org  site is very informative.


nwlegaleagle
Posted: Tuesday, December 13, 2011 1:10 PM
Joined: 12/6/2011
Posts: 3326


Ttom wrote:
nwlegaleagle wrote:

Thank you, Geegee, for the welcome. It was great to find this Board. Haven't gone into the old boards, yet. This one has been very helpful. 

  

Myriam

 

Myriam,

 

Our www.alz.org  site is very informative.

You are invaluable, Ttom!

Mimi S.
Posted: Tuesday, December 13, 2011 7:43 PM
Joined: 11/29/2011
Posts: 7035


Hi MM,

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

 

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

 

And technically, because you were diagnosed before age 65, you are early onset.

 

OK, for me. I am 83, diagnosed 5 years ago. On Thursday I get the results of my 5 year neuro[psych follow up. My impression is, I did well.

 

I feel I am still ahead cognitively of where I was at the time of diagnosis.

 

Please, do follow what many of us call the Best Practices:

1. Take meds as directed.

2. Strenuous physical exercise.

3. Strenuous mental exercise.

4. Mediterranean Diet. I alo take antioxidants and Omega 3. No smoking.

5. Keep up or increase socialization. No couch potatoes.

Recent research has established that physical exercise can build brain cells. AD eats them up. So, you have to do lots of exercise to make up for what the dementia is doing to your brain. 

Also, please find your local chapter. Become active. Tell them you would be delighted to be interviewed, speak, etc to spread the word about the importance of early testing.

 

People who see that well groomed, well spoken lady will have a problem understanding that you can really have dementia.

By speaking up, one hope to get others to the testing site while they are still in the very earliest stages.

 

More power to us!!


ffwife
Posted: Tuesday, December 13, 2011 7:57 PM
Not alot of others feel the way we do. They tell me to call a care consultant or talk to my therapist or get my meds adjusted. All well meaning ideas but not what i need. I feel a bit of peace knowing that I will have a bit of control over the end of my life and ending it with dignity. Life is about the quality not the quanity. I'm fairly young -53 and my husband is two years younger and we have a special needs son.I will not burden him with being a full time caregiver to both my son and myself.