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49 years old, diagnosed yesterday. NUMB
Signsuz
Posted: Saturday, July 21, 2012 6:31 PM
Joined: 7/21/2012
Posts: 7


Well.....depressed.  Numb.  Knew something was wrong.  Persistence.  PCP said stress.  Neurologist said sleep apnea, but he listened when I documented everything.  PET scan determined Mild to Moderate Hypometabolism in the anterior temporal lobes and hippocampal regions bilaterally, preferential decrease in the mesial temporal/hippocampal regions. 

 

Mom has vascular dementia they say is caused by stroke but I don't believe it because her mother had dementia, too.  My aunt on my Dad's side has Alz.  I'm just going to say it.....I have seen what it has done to my relatives.  I DON'T want to go like that.  Have not told anyone except my sister and brother so they will get checked out.  Honestly, I know I am newly diagnosed but I don't want to live in a world of total dependence and causing so much stress to my family.

 

Definitely will not tell my job until I feel it impacts my performace.


always&4ever
Posted: Saturday, July 21, 2012 8:38 PM
Joined: 6/28/2012
Posts: 151


My DH does not have a diagnosis yet, but has the same concerns as you.  I feel helpless in knowing what to say and have learned there are times it is best to just listen.  Please keep sharing here on the forum and let everything you are feeling out.  I and others here will listen.  In the meantime, I am praying for you and your family.
Iris L.
Posted: Saturday, July 21, 2012 10:56 PM
Joined: 12/15/2011
Posts: 18342


Welcome to our online support group, signsuz.  You have come to the right place for advice and encouragement.  I'm very sorry for what you learned about your PET scan.  You are so young.  Even though AD can begin in your age group, I think it is always wise to get a second opinion when hearing news of a serious medical condition.  I would suggest you consult an Alzheimer's Disease Research Center to re-evaluate all of your testing including your neurocognitive testing results.

Did your current neurologist give you a specific diagnosis?  Did the doctor prescribe any medications?  Were medical diseases ruled out?

The Alzheimer's Association offers a 24 hour Helpline staffed with social workers experienced in the care of dementia patients.  Please call and speak with one about what you have been told.

Once you get a second opinion, even if the diagnosis is the same, at least you will be sure.  Then you can get on with your life.  You will join us in following Best Practices, which will help to keep you in the early stages for a long period of time. 

Since you are still working, have you noticed difficulties at work?  Does your job have a long term disability policy?  It might be a good idea to check out the provisions of the policy now.

BTW, sleep apnea can cause dementia.  The dementia may be reversible after consistent treatment using CPAP or BiPAP therapy for at least three months.  Are you receiving treatment?  Were you diagnosed in a hospital sleep lab?

Please continue to read and to post.  You are not alone.

Iris L.

eaglemom
Posted: Sunday, July 22, 2012 10:27 PM
Joined: 3/7/2012
Posts: 2758


My DH just turnedd 55 and he doesn't have an "offical" diagonosis yet either.  All the signs but tests show nothing.  Meaning mri, pet etc show no deterioation, neuropsy shows definate decline.

 

My best advise is to take a deep breath.  If your work isn't suffering that is the good news.  Be thrilled with that.  The diagonosis sucks - no one on this board will disagree with that.  Its all about how you handle the diagonosis.  Its taken months & months for us to wrap our heads around this.  We've personally choosen to tell people - those we love and who support us.  General aquaintances we've not - there is no reason to.  We aren't ashamed - its just personal.

 

So sorry but it takes time to adjust your thinking.  Seek this siteout for information.  eagle


Signsuz
Posted: Monday, July 23, 2012 8:46 AM
Joined: 7/21/2012
Posts: 7


My PCP and Neurologist have been very aggressive in their research.  I have already had a sleep study and was put on a CPAP two months ago.  They have done the blood tests, EKG, EEG, CT, MRI, PET.  It all leads to ALZ.  As the weekend has gone by, so many things have made sense to me.  They have put me on Donepezil. 

 

It has impacted my job.  Not to the point of quitting, but why I couldn't do so many things or needed assistance....I kept saying, "I guess I am getting too old to do this" when it was all mental/organizational lapses.  One function in February, I literally ran around in circles not doing anything but saying what I needed to do but not doing it and moving on to something else to say to do that, then going back.  Too many things to list, but yes....I'd say this has been going on for maybe up to two years.

 

Interestingly enough, I did a little research on great grandmother as well (Mother and maternal grandmother had dementia, plus a paternal aunt).  My maternal great grandmother died at 53 years old.  On her death certificate it said that someone was with her for the 12 hours leading to her death and that she died at home.  The cause of death was left completely blank.  All my other relatives that died in that time period in the same county, all had reasons listed.  "Senility" in those days was such a tarnished label, that maybe the family kept her home and kept it quiet.  53 is awfully young to have no cause of death listed.

 

Bottom line...still feeling severely depressed...SEVERELY.  I will be seeing Pat Summit's ALZ physician.  That is who my neurologist scheduled my ALZ appointment with.  Unfortunately, the first appointment he has is in November. So, need to get out of my slump so I can LIVE while my mind is still fairly strong. 


Signsuz
Posted: Monday, July 23, 2012 8:47 AM
Joined: 7/21/2012
Posts: 7


Also, what is a DH?

 


1skpearl
Posted: Monday, July 23, 2012 8:56 AM
Joined: 7/3/2012
Posts: 31


Every 69 seconds someone will develop Alzheimer's disease. Please share this video and one thing that you never want to forget to help end Alzheimer's. http://www.youtube.com/watch?v=xeHTTonG6co&feature=player_embedded
Signsuz
Posted: Monday, July 23, 2012 8:57 AM
Joined: 7/21/2012
Posts: 7


My sleep study was done at a hospital.  Fortunately due to my location, the University of Tennessee has such fantastic facilities and did most of my testing.  They did my sleep study.  The ALZ office is in the same complex as my neurologist near UT.

 

Wanted to add that when I had put my first post on here, my husband asked what I was doing.  When I told him, he said, "Let's get out of here."  We just drove around looking at smaller homes.  We had talked about downsizing for a couple of years.  He didn't want me on this website. ????


Zen
Posted: Monday, July 23, 2012 11:09 AM
Joined: 7/14/2012
Posts: 55


I think DH = Dear Husband



Zen
Posted: Monday, July 23, 2012 11:11 AM
Joined: 7/14/2012
Posts: 55


M

Signsuz wrote:

My sleep study was done at a hospital.  Fortunately due to my location, the University of Tennessee has such fantastic facilities and did most of my testing.  They did my sleep study.  The ALZ office is in the same complex as my neurologist near UT.

 

Wanted to add that when I had put my first post on here, my husband asked what I was doing.  When I told him, he said, "Let's get out of here."  We just drove around looking at smaller homes.  We had talked about downsizing for a couple of years.  He didn't want me on this website. ????

Maybe he thought you were "dwelling" and wanted to take your mind off things?  Or maybe he's not ready yet to totally face what's going on?  Or maybe a little of both.

Signsuz
Posted: Monday, July 23, 2012 12:06 PM
Joined: 7/21/2012
Posts: 7


Errr.....had to reset password because I couldn't remember it from this morning!  Maybe these things will be so 'IN MY FACE" now.  It is like I can't escape.  

 

I am dwelling on it because I can't separate anything in my life that won't be impacted by this.


Myriam
Posted: Monday, July 23, 2012 12:56 PM
Joined: 12/6/2011
Posts: 3326


Signsuz, my heart goes out to you. If you are up to it (now or in the future) consider signing up for AD trials/studies. I'm currently on 3 and signing up for more. Makes me feel proactive in looking for a cure or something to stop the progression. I have a genetic form of EOAD (early onset alz disease) and want to do all I can for my children and grandchildren. 


If you are interested, here is the link from the Alz Assn website: 

 

http://www.alz.org/research/clinical_trials/find_clinical_trials_trialmatch.asp


BTW, I believe a cure, or something to stop the progression is not that far away, but as others may have told you, following best practices helps a great deal:


Mediterranean Diet

Strenuous Exercise

Socializing

Taking memory meds (some of us also use aromatherapy with good results)

Addressing depression!


It's wonderful to have you here. There are support groups for spouses/caregivers of persons with AD. Check out your local chapter to see if there is one for your husband. He may not be ready for it right now, but knowledge is power.


Iris L.
Posted: Monday, July 23, 2012 2:01 PM
Joined: 12/15/2011
Posts: 18342


I'm so glad you are already seeing experts, Signs.  So many members are not so fortunate.

You may want to strongly consider going out on long term disability before you get fired.  Once you get fired you lose your benefits.

Alzheimer's is usually a slowly progressing disease.  Once you get your diagnosis and begin a treatment plan and make sure your legal and financial affairs are in order, you next step is to LIVE YOUR LIFE. 

You and your husband will need to make some adjustments in your current life and your plans for the future.  But others are doing it and we will be here to support you. 

Please encourage your husband to visit the Spouse/Partner board and introduce himself in a new thread.  He will receive much support.  There are other newly diagnosed EOAD couples who have recently joined our online support group.

Iris L

Zen
Posted: Monday, July 23, 2012 11:43 PM
Joined: 7/14/2012
Posts: 55


Signsuz wrote:

Errr.....had to reset password because I couldn't remember it from this morning!  Maybe these things will be so 'IN MY FACE" now.  It is like I can't escape.  

 

I am dwelling on it because I can't separate anything in my life that won't be impacted by this.  

I had to start a second account, then forgot the password for that too, then I just had to wait until somebody told me where to find the "I forgot my password" thing was before I could get back into the first account.

 

Now I let Roboform remember all my passwords.  I haven't been able to find anything easier and it is a little confusing to set up.  But they're there now, it'll even grab my hotmail account passwords, and if I forget how to retrieve them my son can find them for me.

 

As for "dwelling", I didn't mean to say that you WERE "dwelling" - it's natural for you to be concerned and try to find out as much as you can.  I just thought maybe your husband was being well-meaning and protective, and just wanted to distract you for a little while to try to raise your spirits..



jfkoc
Posted: Tuesday, July 24, 2012 2:40 PM
Joined: 12/4/2011
Posts: 21118


Yes, DH is dear husband.  There are a lot of abbreviations here. You might find them by using the Archive at the top of the page.

 

Please do not stray far from here. This is where you will find the very best info and support... anywhere.

 

 Although your husband would benefit from and be welcome on the forum I suggest you keep this to yourself so that you can say whatever you need to.

 

Univ of Tenn has a reknowned Parkinson's program so the neurology dept must be right at the top nationwide. Lucky you.


Lisa428
Posted: Tuesday, July 24, 2012 3:33 PM
Joined: 12/5/2011
Posts: 795


Just wanted to join the others in welcoming you to this wonderful site.

 

I am sorry for all you are going through.  Many of us have been there and it isn't easy.  Many emotions come with the diagnosis of YoungOnset AD.  You are very young.  I was 53 when I was diagnosed.  I was scared, angry, depressed, anxious and sometimes even rageful!!

 

I hope you will address your feelings.  Sometimes medications are necessary.

 

After you have gone through all this, you will find an understanding and begin to live your life again.  No, it may not be the life you expected but it can still be good and full of wonderful things.

 

Please, keep posting.  It helped me a lot.

 

Peace and Hope,

Lisa


Lisa428
Posted: Friday, August 3, 2012 12:07 PM
Joined: 12/5/2011
Posts: 795


Dear Signsuz,

 

How are you doing?  I've been thinking of you.  I know it takes a very long time to adjust to your diagnosis.

 

Just wanted to let you know we're here.  We would like to help you if we can.

 

Welcome to OUR family.  You are NOT alone.  We are here.

 

Please, post again when you are ready.

 

Peace and hope,

Lisa


Abuela
Posted: Sunday, August 5, 2012 7:22 AM
Joined: 6/24/2012
Posts: 605


Hi.  I am new here.  Was diagnosed last week.  Still in some sort of shock.  I knew things were not quite right.  I am already in process of retiring early.  But I really never expected it to be true.  Lower hippocampal volumes and atrophy on frontal and parietal lobes.  Though I have seen info on hippocampus and understand that part... what is this thing about atrophy?? 

He is recommending a clinical study and I would like to participate.  I live in the Boston area.  Anyone have any insights? 

I hope that I can find my way back to this board. 

Thanks in advance for any help.


Iris L.
Posted: Sunday, August 5, 2012 10:04 AM
Joined: 12/15/2011
Posts: 18342


Welcome to our online support group, Abuela.  I'm glad you found us but I'm sorry for the reason you came.  You've found a group of people who understand what you're going through.  We hope you will look upon us as your new family to help you deal with new issues.

You have posted on an ongoing thread, and we would like for all members to be able to meet you.  Can you begin a new thread and tell us more about yourself?  What symptoms made you seek answers, what exactly is your diagnosis, how was the diagnosis made, and are you on any medications? 

You asked about atrophy. This means certain areas of your brain have been damaged and begun to shrunk.

You mentioned retirement.  Would you be able to go on long term disability?  Does your company have a disability plan?  Once you leave your job you will lose all work related benefits.  This is a common issue for younger onset AD patients.

Although there is no cure for the dementias, there are ways of improving daily functioning and delaying the progression of the disease in the early stages.  We call this Best Practices,  These include taking medications as prescribed, eating a Mediterranean diet including lots of anti-oxidants (vegetables) and omega 3 fats, vigorous exercise, keeping the brain stimulated with new learning, not just doing puzzles and games, and continuing to socialize. 

From your library get a copy of "The Alzheimer's Action Plan" by Dr. Doraiswamy and Lisa Gwyther.  This book is one of many good ones that will tell you what you need to know.

There is much to learn and do in the coming days and weeks.  Eventually you will have to seek a trusted person to become your POA for financial affairs and for health care for when you become less independent.  It is best to take care of this now, if you have not already done so.  All seniors should have these legal documents in place.

Please read the information on the main web page about Alzheimer's and the dementias, it is valuable. 

The Alzheimer's Association runs a 24 hour Helpline at 1-800-272-3900 that is staffed with volunteers and specialized social workers, who are called Care Consultants.  Their services are professional and free.  They will help you locate your local chapter.  Many chapters now have in-person or telephone support groups for patients.  They will also help you locate services in your area and give personalized advice for your situation.

In order to make it easier to log back on, please write down your user name and password and keep it near your computer.  Then you can find it easily if you need to recall it.

There will be a chat for patients tonight (Sunday) at 5 pm pacific time.  Please check the chat thread for instructions on how to enter the chat room and the other time zones.

Please continue to read the message boards.  Feel free to post whenever you have a question or a concern.  We are here for you.  You are not alone, Abuela.

Iris L.

Mimi S.
Posted: Sunday, August 5, 2012 10:13 AM
Joined: 11/29/2011
Posts: 7027


Hi Abuela,

I'm so sorry for your diagnosis, but so glad you found us.

 

Boston is a great center for Alzheimer research. Please call the help line: 1-800-272--3900 and ask for the names of the Boston area hospitals involved in Alzheimer's care and research. Also ask about Trial-match. 

You were given the technical reason for your diagnosis, but not an explanation. Please , when you call the help line, also ask them to explain that.

 

On the alz.org site is a 'brain tour' Click that. Hopefully it will further explain the atrophy. 


Mimi S.
Posted: Sunday, August 5, 2012 10:36 AM
Joined: 11/29/2011
Posts: 7027


PS.

Tonight at 8 Eastern Time, do join us in the :I Have Alzheimer's Chat Room. 

 

Click on that board, then click on enter chat room and follow instructions.

 

Your name will appear in a box to the right. You can also see who else is there. Iris is the lady who organizes this. 

 

You type in the space at the bottom. You can tell when someone is writing because a slanted line will be blinking by their name. Sometimes it stops blinking. The person may just be thinking of what to say next. 

If there are lots of people there it can be confusing. If so, just type in: I need to talk. Then when you are recognized, ask if you can set up a time to have a separate chat. 


Mimi S.
Posted: Sunday, August 5, 2012 10:41 AM
Joined: 11/29/2011
Posts: 7027


PS.This a list that was recently published in one of the threads about the Boston Area. I also think that Bringham & Young Woman's Hospital (or something like that, is also doing research.)


Boston University
Neil William Kowall, M.D., Director
Alzheimer's Disease Center
VA Boston Healthcare System
Neurology Service (127)
150 South Huntington Avenue
Boston MA 02130
Website: www.bu.edu/alzresearch
Information Line: 1-888-458-2823 (toll free) 
ADC e-mail: bmyoung@bu.edu
Director's e-mail: nkowall@bu.edu
Director's Tel: 857-364-4831
Director's Fax: 857-364-4454

Massachusetts General Hospital/Harvard Medical School
Bradley T. Hyman, M.D., Ph.D., Director
Alzheimer's Disease Research Center
Massachusetts General Hospital
114 16th Street, Room 2009
Charlestown, MA 02129
Website: http://madrc.org
Information Line: 617-726-3987 
Director's e-mail: b_hyman@helix.mgh.harvard.edu
Director's Tel: 617-726-2299 
Director's Fax: 617-724-1480


Abuela
Posted: Sunday, August 5, 2012 3:57 PM
Joined: 6/24/2012
Posts: 605


Thank you Mimi.  I will take your advice.  Don't know if I will get to the live chat or not tonight.  I appreciate all the helpful info.  

Doctor is actually a clinical study center and that is  what he is asking me to consider joining.  I am not sure if you can be in more than one study at a time.


Abuela
Posted: Sunday, August 5, 2012 4:02 PM
Joined: 6/24/2012
Posts: 605


Thank you Iris for all of the info and the support.  I do need to talk to people that understand this.  Thank you for the answer on atrophy.  I do think that he did mention that the brain was shrinking or something like that.  

I am not sure that I can make the chat tonight but thank you for the info.  I will look into how to start a thread and tell about my story, such as it is right now.  I am in the very early stages it seems.  


Myriam
Posted: Sunday, August 5, 2012 8:08 PM
Joined: 12/6/2011
Posts: 3326


Abuela, Yes, you can be on more than one study at a time, but some studies may disqualify you if you are currently involved in a study that could impact the results of the other study. Currently, I am in two studies, and have been on two other studies that have closed. This week, I'm signing up for more. Call me a guinea pig (BTW, I'm an abuela, too.)

 


Abuela
Posted: Sunday, August 5, 2012 8:25 PM
Joined: 6/24/2012
Posts: 605


Thanks!  I will check it out.  I believe that this one makes you not be on any others.

But I appreciate the contact.  

 


Iris L.
Posted: Sunday, August 5, 2012 8:31 PM
Joined: 12/15/2011
Posts: 18342


Abuela wrote:

 

  I will look into how to start a thread and tell about my story, such as it is right now.  


Abuela, go back to the main Younger Onset page, and click on the light green tab  that says "Add Topic". 

This will open up two boxes--one for the title of your post and one for your text.  Tell us about yourself.

Iris L.


Abuela
Posted: Sunday, August 5, 2012 8:38 PM
Joined: 6/24/2012
Posts: 605


ok
minnie looking for micky
Posted: Wednesday, August 15, 2012 3:41 PM
Joined: 8/15/2012
Posts: 2


i know how you fell, numb is not even the right word for me any how. i lost my husband of 29 years and he was only 49 i lost him on june 17,2012. we only found out in oct 2011. he went down hill fast the mri showed that hi brain was like a 90 year olds. he had Alz. so now iam lost if u need to chat let me know and will try to help if i can have a goo day,
minnie looking for micky
Posted: Wednesday, August 15, 2012 3:49 PM
Joined: 8/15/2012
Posts: 2


hi to all: iam new in here. so here i go i lost my husband on june 17,2012 to Alz he was only 49. we found out he had Alz in oct 2011.when they did the mri it showed he had a brain of a 90 year old man. by  the end he was told care and i was the one to do it all. it was hard to tell 3 geand kids about thery poppy been sick. the kids are 6.5.4. so now iam lost with out him we are high school sweet harts been married for 29 yeas. need to know does it get better in time,. i just miss him so much. thanks.

 


Iris L.
Posted: Wednesday, August 15, 2012 6:02 PM
Joined: 12/15/2011
Posts: 18342


Minnie, I am so sorry to learn about the loss of your dear husband to Alzheimer's disease at such a young age.  Please accept my condolences.

You are welcome to post on any board but there is a board especially for caregivers who have lost a loved one to Alzheimer's disease.  It is the seventh message board down on the discussion board.  You will find members there who can help you with your sorrow.

Please accept the solice you can find here.  Post whenever you feel up to it.  I hope you find the comfort you seek.

Iris L.

Geegee
Posted: Thursday, August 16, 2012 8:00 AM
Joined: 11/29/2011
Posts: 514


Dear Minnie, I can hear how lonely you are.  This has been a very recent passing and it will take time.  Please accept my condolences for your loss.  


Iris recommended you go to the support forums for Spouses.  There will be people there who can give you support from their experiences.  


this forum is visited most by those of us that have a dementia diagnosis.  You are also welcome here.


Any place you go on our message board, you will find understanding.


Geegee
Posted: Thursday, August 16, 2012 8:12 AM
Joined: 11/29/2011
Posts: 514


Abeula, welcome!  I'm so sorry that you have to come here for support, but you have found the right place for understanding.  We do care about what you are going through.  I hope you do start a new thread about yourself or to ask a question you may have.



Have you contacted you local Alzheimer's Association chapter.  You can locate the one closest to you by going to "local resources" above and choose "find your chapter".


You can also go to " contact us" above for our 24/7 Helpline phone number.


Please come back often and know that we will be here for you as much as we can.


John50
Posted: Wednesday, August 22, 2012 12:31 PM
Joined: 3/14/2012
Posts: 140


Sinsuz,

It has been a while since you first posted and I hope you are coping a little better by now. At least the initial shock is better? I was first diagnosed at age 48 in 2007 after having difficulties at work being successful with what had previously seemed easy. I know this is a shock and a total change that is hard to comprehend. I always say it is almost impossible to dwell on thoughts of the future because it is too overwhelming. That is not to say you don't have to plan and get things in order, just to say it isn't good to dwell on your condition in the future. I have a lot of trouble if I start thinking about that because I was a caretaker and watched my father go through final stages and die from the same thing. I just take things one day at a time and know that the future is out of my hands as far as disease progression. Take care and keep us updated!


BIDDIE12
Posted: Thursday, August 23, 2012 11:08 PM
Joined: 8/19/2012
Posts: 2333


I"m so sorry.  I"m new here myself..  My husband was told only a few weeks ago he is 63yrs old.   His Doctor , after alot of testing was crossed between ALZHEIMER'S  and FRONTOTEMPORAL DEMENTIA "FTD"...

but the Doctor thinks  more for my husband it is Alzheimer's...

You have had many test...   What I could not make out was which one the doctor is saying you have..   It seems like you were giving all the information to the Doctors which is GREAT.. and they should thank you for it..

You were right to tell your sister and brother and mabe think about genetics testing would be good..  My children will be doing that, because my husbands mom had this and her three sisters also had it..  Please know you will be in my thoughts..and you are welcome here.. please post your questions, and read, read..that is what we are all doing..  rest easy now....