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Newley diagnosed
Navy1911
Posted: Wednesday, July 11, 2018 8:15 PM
Joined: 7/2/2018
Posts: 3


I was diagnosed by Neuropsycology today, SAJMMC, with early stages of Alzheimers. We knew due to my family history & me working closely with dementia patients that this was the likely outcome. i am reeling a bit. my wife is scared & i am just looking for information from sources that I trust. thank you. My name is Scott W. & my widw Is Letty, we are 62 & 60.
Jo C.
Posted: Thursday, July 12, 2018 8:10 AM
Joined: 12/9/2011
Posts: 8926


Hello Scott and a very warm welcome to you.   I can imagine what a difficult day this is for you and am so glad you have found this very supportive place and we also would welcome Letty.   In fact, the Spousal Forum has multiple Members who have spouses with Young Onset Dementia.

You need some breathing time and we are here to talk and support.

We Members can Post on any Forum we wish; but you will find that most persons with dementia Post on the Young Onset Forum; you will find more input there.

Dealing in practicality, because of your young age, Social Security has a special "fast track" for processing disability applications; so if that is something you need to do, Google can assist you and Letty to finding information about this and your local SS office can assist with information and application.

The Alzheimer's Assn. has a Helpline at (800) 272-3900.   If you call, please ask to be transferred to a Care Consultant.   There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They have much information, are very supportive and can also assist with our problem solving.  Your local office of the Alzheimer's Assn. can assist with local referrals and information about Support Groups.

Multiple Members here advise to follow a Mediterranean Diet and daily exercise which does bring positive results for health.   You will find input about that on Young Onset as you become acquainted.

As mentioned, Letty may find it helpful to also read or participate on the Spousal Forum.  There are multiple Members there whose Loved Ones (LOs) have Young Onset and she will get much feedback.

We are looking forward to getting to know you better; we are all here in support of one another and that now includes you and Letty too.

J.


Karen S.
Posted: Thursday, July 12, 2018 1:23 PM
Joined: 7/12/2018
Posts: 1


I was diagnosed last week with Alzheimer's and am seeking information and support. I'm 54 years old and live with my husband and a son who is 20 and still in college. I look forward to learning from others who are living with Alzheimer's.

Karen


Mimi S.
Posted: Thursday, July 12, 2018 6:39 PM
Joined: 11/29/2011
Posts: 6450


Dear Scott and Karen,

Take several deep breaths.

Welcome, from another person diagnosed with Alz.

Scott how were you previously associated with AD?

Jo c referred to what many of us diagnosed refer to as Best Practices, Research hAS SHOWN The value of each.  Put together they have a multiplying effect in prolonging our stay in each sgage.  That being sAid we have still to figure out why some progress faster than others. personally, I wonder if the presence of amyloid is a factor.

1. Take meds as directed.

2. Lots of physical exercise. Get that ticker pumping at a faster rate for a bit .

3. Cognitive stimulation. A variety is best. In my opinion you don't need to pay for those on-line ones.

4.  Mediterranean diet. Check on-line,  Limited alcohol and no smoking.

Socialization is very important. Most of us do better with small groups and quieter groups.

I recommend reading as much as you can, but bi by bit.

Do get in touch with your local Alz. Assoc. Our help line: 1-800-272-3900 cangive you the #  Call during normal business hours.  Ask about support groups and Memory Cfes.  Get to know staff. Does your group have a yearly Walk to End Alzheimer's?

Do stay with us on both of our boards.

A diagnosis is not the end of the world. It is possible you may stay in Early Stage for years.

Always on my wrist is a bracelet: A Reason to Hope.

Again, I'm so glad you found us.


Navy1911
Posted: Thursday, July 12, 2018 9:54 PM
Joined: 7/2/2018
Posts: 3


Thank you so much. I actually have worked with Dementia patients for a number of years. I do not work in that field any longer but am always ready for updated & new information. Looking forward to what I can do to help & gaining more insight.
Mimi S.
Posted: Friday, July 13, 2018 8:16 AM
Joined: 11/29/2011
Posts: 6450


Hi Scott,

At what level were the patients you worked with?

Those of us in Early Stage are seldom "worked with."  

We seem too normal. 

Do contact your local Association and get involved. Most chapters are looking for folks with the disease who can speak poubli ally, give interviews, etc.

Can you get to the national Forum each spring in DC. I attended for several years.  One of the highlights for me was meeting so many others in Early Stage. Without an identifying mark on our badge, it would be impossible to spot us.  If you are diagnosed, registration, which includes everything except hotel is free. If you are travelling solo, your chapter sometimes can provide some assixtance or sometimes a room mate to cut down that.  Some folks stay at a cheaper hotel and commute. That would not have worked for me.


Jo C.
Posted: Friday, July 13, 2018 10:15 AM
Joined: 12/9/2011
Posts: 8926


Hello Scott and Karen; you have received much information from several sources and I would also like to share a good book for those who are newly diagnosed.   It is written by dementia specialists at Duke University and is about the "how to's" and lots of good resource information.   It is:

"The Alzheimer's Action Plan," by Doraiswamey and Gwyther.  One can order it online or at any bookstore and one can also check their library to see if they may have it.  Lots of resources and suggestions about how to face the new diagnosis.

Once you have "caught your breath," and are ready to do so, it woild be a good idea to seek the advice of a Certified Elder Law Attorney to get all your legal paperwork done . . . Durable Powers of Attorney for both Medical and Financial purposes, a HIPAA Waiver to permit your chosen Loved Ones (LOs) to enable them to speak with your doctors and other healthcare providers if you are not able to . . . . and other documents which will be helpful as well as how to best position yourself for the future.

Do know this truth:  Each and every person with dementia will have a different course; one person is not the same as the other.   People who come onto this Message Board most often are experiencing very difficult times . . . not all people have such experiences.  So do not think that any description will be your own course of events.

Example:  My step-dad was diagnosed with Alzheimer's Disease and he had about a 20 year course before he passed away from a totally unrelated cause.  He always knew who he was and who we were, he enjoyed socialization, could shower and dress and feed himself independently and remained continent.   He was quite content at home and was of good spirits throughout those 20 years.

It is great for both persons with dementia and their Loved Ones to attend support groups within one's community if they can.  Just know that one group is not always the same as another; groups too have their own personality and culture, so if one group does not fit well, try another.

When one is diagnosed with a particular condition, it is happening not only to the person who receives such a diagnosis about themselves; it is also happening to the other family members, so it is a good thing to have open communications and to include family in support groups and sharing of information so as to better understand.   Education is absolutely necessary no matter what one's background has been.  It is different when walking one's own path.

One can also ask the Alzheimer's Assn. Helpline at (800) 272-3900 for good detailed information that you can read and also provide to family; there are some very good booklets.  This information necessity includes extended family who may not be educated to such a diagnosis and who may have misunderstandings.  Also, Karen, I gave Scott information above regarding the Helpline and the Care Consultants.  You may want to take a look at that in the Post above and perhaps even make a call.  Family members are also invited to contact the Helpline when they feel they would find it helpful. As said, there are no fees for this service.

Sending warmest of thoughts your way to both of you, and as said in my prior Post; we are all here in support of one another and that now includes both of you too.

J.


Mimi S.
Posted: Friday, July 13, 2018 7:06 PM
Joined: 11/29/2011
Posts: 6450


This is my favorite book for those newly diagnosed:

 3. Living Your Best with Early-Stage Alzheimer’s: An Essential Guide by Lisa Snyder

Snyder’s book is a must read for people newly diagnosed with Alzheimer’s as well as their loved ones. When people are diagnosed with Alzheimer’s in its early stages it is possible that they will live with only mild symptoms for many years. This book provides information on how to cope, manage symptoms, plan for the future and maintain important relations

Lisa Geonova wrote; I'm still 

alice. Fiction, but based on interviews with Alz. 

Assoc. Early Stage advisors.  Some of us could not read it because it hit too close to home.  For sake of length of book, progression was compacted.


girlmoustakis
Posted: Saturday, July 14, 2018 1:11 PM
Joined: 10/10/2016
Posts: 6


My name is Henriette and I have been formally told I have the early onset.  The doctor said I have had it for almost years now.  I didn't know I had it till I started making mistakes at work.  They harassed me for almost a year.  I finally tried to kill myself last October and have been seeing medical professionals for almost a year to find out why I was forgetting.  To make it short, I lost that job.

This Monday I was told the diagnosis was real.  I have been freaking out all week.  I don't know what to do.  I was my mother's caregiver when she had it.  Now my husband will have to be my caregiver. I know he's not emotionally ready for it.  He keeps telling me I should be more Mohammed Ali and fight it.  I just see what my mother turned into and I see me. How long before the freak out period stops? I'm scared.  I'm 63 and have a good memory for Art, Music, Movies, The Beatles and their songs, Shakespeare.  Where will all that info go when my mind stops remembering? Will I be able to remember my husband in five years? Will I forget love? When will I learn to accept this and move on to living again?


Mimi S.
Posted: Saturday, July 14, 2018 6:19 PM
Joined: 11/29/2011
Posts: 6450


Welcome girlmoustakis. I'm so glad you found us. Do take a deep breath and read carefuuly the above posts.

The disease progresses at different rates  with different folks. We cannot predict at this tie.  Our motto is: one day at a time.

Did upi you have the glucose PET scan that shows if amyloid tissue is a factor?

 


Horse Lover
Posted: Monday, July 16, 2018 5:54 PM
Joined: 11/4/2017
Posts: 122


Mimi S., I noticed you asked about the PET for amyloid.  Is there something I don't know?  All I really know is that I have EOAD and I have more plaque than the Doctor expected to find.  What else do you know?
Zebra711
Posted: Saturday, September 1, 2018 6:17 PM
Joined: 8/28/2018
Posts: 5


Hello everyone, I am brand new to this message board and it's been only a few weeks since my diagnosis via PET scan for tau (not amyloids). 

I'm glad that I know what's going on with my brain but, of course, somewhat overwhelmed. So many decisions -- do I get a 2nd opinion, do I join a clinical trial (I have already been offered a choice of two different trials). Should I consider the currently used memory drugs? I know I want to move into a CCRC (continuing care retirement community) but how do I choose which one? Will my husband be able to handle this? Should I tell friends and family? Etc., etc.

I know that we are all struggling with questions and I'm glad that I found this resource (the Alzheimers' Association and specifically this Message Board). 

Thanks in advance for sharing your thoughts. So far, I've found that when I focus on the positive things in my life I can actually be cheerful. And laugh. Maybe I'll be stronger than I imagined.


Mimi S.
Posted: Saturday, September 1, 2018 9:01 PM
Joined: 11/29/2011
Posts: 6450


Hi Zebra,

Welcome to our world. Im so glad you found us.

Do educate me: how can there be tau and no amyloids?

I have just moved into an assisted Living but more because of my fraility than dementia. I'll write more about this after I've been here a bit.

People say the sooner one moves into Continuing Care, the better. If you can live by yourself with ease and have opportunity for physical, cognitive and socialization, perhaps there is no rush.  Do choose carefully. Visit at odd hours unannounced.

 Check state records for violations. 

Check activity daily schedule for activities involving physical and cognitive activities.Do become active in your local Alz. Assoc. office.


Zebra711
Posted: Sunday, September 2, 2018 2:27 AM
Joined: 8/28/2018
Posts: 5


Hi, Mimi,

Thanks for your reply. I had a tau PET scan but not one for amyloids. I most likely have amyloids as well but my doctor said I need a different scan to determine that. I will be getting the amyloid scan soon.


dolor
Posted: Sunday, September 2, 2018 2:21 PM
Joined: 11/9/2017
Posts: 208


To anyone who understands pet diagnosis:

Are they two different scans? But both Pet scans?

One scan can't determine both? Argh how aggravating. 


Andrew60
Posted: Monday, September 3, 2018 11:59 AM
Joined: 7/17/2017
Posts: 295


Mimi S. wrote:

This is my favorite book for those newly diagnosed:

 3. Living Your Best with Early-Stage Alzheimer’s: An Essential Guide by Lisa Snyder

Snyder’s book is a must read for people newly diagnosed with Alzheimer’s as well as their loved ones. When people are diagnosed with Alzheimer’s in its early stages it is possible that they will live with only mild symptoms for many years. This book provides information on how to cope, manage symptoms, plan for the future and maintain important relations

Lisa Geonova wrote; I'm still 

 

alice. Fiction, but based on interviews with Alz. 

Assoc. Early Stage advisors.  Some of us could not read it because it hit too close to home.  For sake of length of book, progression was compacted.

Thanks for the tip on this book. Somehow, I had not heard of this book before, and my wife just ordered it through Amazon.

Andrew60
Posted: Tuesday, September 4, 2018 3:59 PM
Joined: 7/17/2017
Posts: 295


I dont know how Amazon does it, but recieved my book today. Thanks again Mimi. A quick glance through the book and it is very informative, cant wait to read it, and hope it sinks in, vice forgetting what I read.
Iris L.
Posted: Tuesday, September 4, 2018 4:09 PM
Joined: 12/15/2011
Posts: 15435


Welcome Zebra.  There are many steps to take before moving into a CCRC.  You are married.  What is your living situation now?  You have time to investigate your options.  Do not be in a  rush.  Have you stopped working?  Are you on any medications?  Following Best Practices can help improve functioning and prolong the early stages.

Read the online reading material and the books for patients.  Ask lots of questions.  Make a plan.

Iris L.


Lindawomble1
Posted: Tuesday, September 25, 2018 9:50 AM
Joined: 9/25/2018
Posts: 1


Hello my name is Linda. I’m 49 years old and I was diagnosed 2 years ago with EO dementia. I have a family history of dementia and wanted to know if there are any young patients like me?  I recently had my driving privileges taken away by family out of concern. I feel like my right arm just got chopped off. What medications are other patients taking please?
Mimi S.
Posted: Tuesday, September 25, 2018 12:42 PM
Joined: 11/29/2011
Posts: 6450


Hi Linda,

Welcome to our world.

Why was your driving revoked? I'm probably in the minority, but I feel in these days of earlier and earlier diagnosis, there should be cause, not just a diagnosis.  Were you in an accident, dents on car, getting lost, taking too long to get places, confused while driving?

I'm, thank the good Lord, still considered Early Stage, so only take Aricept. Namenda is usually added when one hits mid stage.

Several of us PWD strongly believe in the life style of Best practices:

1. Take meds as directed.

2. As much physical activity as possible. Get tht heart rate up for a bit.

3. Cognitive activities. A vafiety is best.

4. Mediterranean Diet. No smoking, limited alcohol.

5. Maintain or increase socialization.

Do stay with us.

 


 
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