Welcome!
Welcome to our online community for early-onset Alzheimer’s. You never expected a diagnosis of Alzheimer’s, let alone at a young age. You may be thinking about how this impacts you, your family, finances, career and relationships. Participate in this forum and share your experience with others who are living with early-onset Alzheimer’s.

You are not alone. A recent report, Early Onset Dementia: A National Challenge, a Future Crisis, estimates that 500,000 people in this country are living with early-onset dementia and the number is expected to grow.

Yes, there is a growing number of Early Onset Alzheimer's Disease. I am one of them. DX at age 50 in 2004. I follow in my mothers and brothers footsteps. The real tragedy with EOAD is that it can still take so long for a person with symptoms to get a proper diagnosis for the disease. Many Doctor's still do not believe that a person younger than 60 can have Alzheimer's Disease.
My diagnosis was based on a well documented family history of the disease and the advent of some very puzzling occurances in my private and professional life. I thought that I would see signs closer to 55 rather than age 50.
It is very important for those of us who have been properly diagnsosed to speak up; and tell our stories so that we can educate others about this disease. Please if you read this, and have questions, please feel free to ask about the effects of Early Onset Alzheimer's Disease on the family and the patient.
chuck

Chuck -- I just read your post. Yes, it is important for those of us to speak up. I've been encouraging people to let media outlets know how appreciative they are for stories on EO Alzheimer's or Alzheimer's in general.

Last Week, The Today Show, ran a piece about Alzheimer's, drugs, treatment, etc. I asked all my friends to email the Today Show and thank them for their coverage. I would encourage everyone to do that as well.

This Friday, October 6th, CNN Headline News is going to run a "Healthy Minute" on Alzheimer's and Early On-set. There will be four different segments throughout the month. My family was fortunate to be interviewed and they will have experts on discussing Alzheimer's in general. The last feature is on November 6th and that will discuss getting a diagnosis. The Healthy Minute will air in the 1:00 p.m. hour usually about 8 minutes after the hour. It will run every hour through the 6:00 hour on Friday. Everyone -- Please let CNN/Headline News know that their coverage is important.

Kris, I am going to copy this and move it to the Caregiver forum also!

Greetings,
Iam a Personal Nurse working for Humana Insurance. One of my memebers that I am currently working with lives in very Northern Wisconsin. She does not have access to a computer or support group. She is of course young, 53, and having a very tough time. Is there a support group that would allow her to join telephonically or someone willing to talk with her on the phone? She needs to connect with others going through this process. Please share with me any advice I could then share with her. Thanks you so very much for your time and help.

CHuck, I echo your words of speaking out as so many of us have and are continuing to do. I just completed 2 different newspaper interviews that will be running in Novemember. The first is out of New York through a major media newspaper there, this release will cover over 400 newspapers in the U.S. including Canada. The other was for a magazone and small newspaper in Oklahoma. We have to continue the fight until the battle is won.

Tracy -- I talked with that reporter from New York as well. The other CNN Headline News feature that my family and I did will be running on November 6th.

Kris B.
www.creatingmemories.blogspot.com

Chuck,

Do you mind sharing with me the "symptoms" you had before being diagnosed with EOAD? My mother is 58 and is in Stage 5, and I'm 40. I'm worried about myself and my sister, not to mention my children.

Thanks!

quote:

Originally posted by Chuck Jackson:
Yes, there is a growing number of Early Onset Alzheimer's Disease. I am one of them. DX at age 50 in 2004. I follow in my mothers and brothers footsteps. The real tragedy with EOAD is that it can still take so long for a person with symptoms to get a proper diagnosis for the disease. Many Doctor's still do not believe that a person younger than 60 can have Alzheimer's Disease.
My diagnosis was based on a well documented family history of the disease and the advent of some very puzzling occurances in my private and professional life. I thought that I would see signs closer to 55 rather than age 50.
It is very important for those of us who have been properly diagnsosed to speak up; and tell our stories so that we can educate others about this disease. Please if you read this, and have questions, please feel free to ask about the effects of Early Onset Alzheimer's Disease on the family and the patient.
chuck

Hello, My husband was diagnosed 6 years ago with early-onset AD. He's managed to maintain an optimistic attitude, but is sadly declining. We've used numerous modalities including the prescribed drugs, acupuncture, and many nutritional supplements, and most importantly, he maintains strong spiritual beliefs. I'm writing a book called "One Foot in Heaven: How Having a Spiritual Connection Helps Six Families Cope with Alzheimer's Disease" and I'm looking for people who are interested in contributing. I'd like to have the major religions represented, and/or spiritual practices such as meditation, yoga, etc.

If you are interested in considering this, please e-mail or call me at 303-447-8300 (I'll call you right back so you're not charged for the phone call.) I can also send you a brief outline of the book. "One Foot in Heaven" is meant to be a cathartic experience for the contributing families, and as a spiritual how-to for others trying to deal with the devasting effects of Alzheimer's. There is also the possibility of it being made into a TV special (my son is a TV producer in LA).

Many thanks---and blessings,
Barbra Cohn
healthwriter1@gmail.com
303-447-8300

Nicola, Thanks for your concern for your E.O.A.D. patient. I also have E.O.A.D. and am involved in advocacyfor A.D.. I would be more than glad to speak to your patient by phone, Please e-mail me direct and we can exchange numbers or discuss the matter further. We are all in this together. Thank you Charley Schneider charley3rd@yahoo.com

Hi Nicola, my name is Tracy and I too have EOAD, I live here in the Midwest, the same as Charley, he is a great guy by the way. I would be happy to also talk to your patient. I think the more individuals she could talk to the better she may feel to know that she is not alone in this.

Here is my e-mail: tiger@todays-tech.com
and if you or she will send me her number, I would be happy to talk to her as well.

Hello Everyone,
Im not sure if i should be on this board, as i come from Yorkshire England.
I would just like to introduce myself, my name is Debbie and i am an assistant manager of a Day Centre run by the Alzheimers Society for early onset dementia.
We specialise in early onset, and have a varied range of Dementia type illnesses as well as Alzheimers.
If i can be of any help to anyone re advice ect i am willing to do so. I cannot comment on your laws and policies, but may be able to help in other ways.
Thankyou for taking the time to read my post.
Debbie

Hello, I am writing for my husband as the screen bothers his epilepcy. He was dx 1.5 years ago when he was 51 his father died of it. He has been on Aricept and Namenda in the past month he has had strange dreams. So doc feels the aricept may not be working well, so changing it to another drug. Has anyone here had this problem?

Nae -- when I was on Aricept I had really bad dreams as well. I also had really bad cramps in my legs and feet. My doctor switched me to Exelon and Namenda and I have not had the problem. Good luck to you.

Kris B.
www.creatingmemories.blogspot.com

Nicola:

We also reside in northern wisconsin and I am having ome problems in finding someone for my wife to discuss her feeling with other than me. As a provider we do not always understand the feeling that our loved one is having. We live in Crandon Wisconsin. We are looking for some support for my wife as well as a support group for myself. Drop me an E and maybe we can help each other

quote:

Originally posted by barbra Cohn:
Hello, My husband was diagnosed 6 years ago with early-onset AD. He's managed to maintain an optimistic attitude, but is sadly declining. We've used numerous modalities including the prescribed drugs, acupuncture, and many nutritional supplements, and most importantly, he maintains strong spiritual beliefs. I'm writing a book called "One Foot in Heaven: How Having a Spiritual Connection Helps Six Families Cope with Alzheimer's Disease" and I'm looking for people who are interested in contributing. I'd like to have the major religions represented, and/or spiritual practices such as meditation, yoga, etc.

If you are interested in considering this, please e-mail or call me at 303-447-8300 (I'll call you right back so you're not charged for the phone call.) I can also send you a brief outline of the book. "One Foot in Heaven" is meant to be a cathartic experience for the contributing families, and as a spiritual how-to for others trying to deal with the devasting effects of Alzheimer's. There is also the possibility of it being made into a TV special (my son is a TV producer in LA).

Many thanks---and blessings,
Barbra Cohn
healthwriter1@gmail.com
303-447-8300

Hi everyone my name is Cheri and my mom has early-onset. She is 62 and her doctor asked us to think back to kind of see how far back it. We think it started almost 10 years first it was losing keys misplacing things. But now it is pretty bad the meds are not working. My dad works everyday and me and my sister take care of her. We have to give her a bath give her meds. She is no longer able to most everything she could. She is at the point now that me and sister say it used to be month to month then week to week then day to day but it seems like right now it is hour to hour. Every day we see her lose a little bit more of herself. I have been putting family pictures together and just to look at her hands from before her nails were done and nail polished to now not knowing what her nails are. Her hair and make-up always done to now she does not know how to do her hair and she tries make-up and we let her try. Watching her give our kids a bath to now we give her one. My heart hurts everyday knowing this is not how she wanted to live. Not knowing how much more time we have with her. Christmas was very hard for my whole family knowing this was the last one not she will die but her mind will. Well thank you very much for reading my e-mail and for giving up some of your time for me. Cheri

Dear Cheri: I just finished reading your tender email about your mother and the tears are still running down my face. See I am 61 and my mom is 93 and she has Alzheimers. You and your sister and dad are very loving and wonderful people. I would love to email more and learn more about how your mom is doing. If you would like that, please email me at: mazol1@yahoo.com.

I would like everyone to know that I will continue to fight for this devastating disease to get the funding and to spread the word so this disease is more recognized and there is more help for people with this horrible disease. I have not posted for a while, my husband passed away this last tuesday, from Picks or advanced Alzheimers determined by a PET and MRI Scan done in August,06.

Dear Candy S.: I am so sorry for your loss. This is a terible desease and it takes its toll on everyone. If you don't mind, please tell me what "Picks" is. I have never heard of that before. Elaine S.

I am so very sorry for your loss. My husband has EOSA and I am sorry for the death that occured before you lost him too. Nae

Picks disease is a dementia that I tell people is a sister of Alzheimers only it seems to attack younger people and is very aggressive. With my husband, it was like he had ADHD, he was very hyper, he would hoard things, would not like to get cleaned up, didn't care about your feelings at all anymore, couldn't get him to be motivated to do anything in life anymore, and he became mute. My husband was still walking, and was continent when he passed away. He didn't get lost or wander away from the house. What took my husband it that he brainstem was affected, because Picks attacks the frontal and temporal lobes of the brain, but his moved down into the brainstem area and at the end he had also developed Bells Palsy, where one side of his face drooped. As I have researched and have been in the Yahoo Picks' chat room I think my husband started behavioral signs about three years ago, like depression and obsessive compulsive behaviors. At first with Picks he acted like it was OCD, then depression and a year ago he couldn't remember on his job if he ordered stuff or not so he had to leave work. Picks seems to affect people under sixty but in the chat room there is alot of older people who have it also. I recommended that if anyone wanted to make a donation at the funeral home to make it to the Alzheimer's Association because this organization know alot about all the stages and how to get help for us.

To Candy S., Thanks for the info on Picks. Since I had never heard of it before your email helped. Elaine S., Las Vegas

I was diagnosed with early-onset Alzheimer's in Sept 2003 and was immediately placed on disability (thank goodness I'd signed up for long-term disability!). I've been taking Aricept & Namenda with excellent results, as far as my mind goes. However, I've had a lot of tummy problems (Diarrhea) that I assume is from Aricept since my diagnosing doc was concerned about it at that time. I've since moved, and I plan on asking my current neurologist if there are new meds that are as good as Aricept that wouldn't upset my tummy so much. Otherwise, I'll stay on Aricept!!!

Does anyone know of any of the new drugs that work as well as Aricept? I'd love hearing from you.

As far as being an "early-onset" person, my memory seems to be better than my family & close friends at the moment, (chuckle) thanks these wonderful meds. However, I have problems with "functional ability" ... i.e., my former-excellent organizational skills have gone to pot, and I have problems staying motivated as well as getting overwhelmed very easily when things start to pile up ... not to mention wanting to stay at home rather than face the "world" (especially since I've moved to a new town). Are there any others of you out there who are having the same problems and can offer suggestions?

I'd like to offer a suggestion to those of you w/Early-Onset Alzies ... go dancing!! I was a big fan of dancing (It was my major hobby ... ballroom, country-western, swing, etc.) before I starting having Alzie problems and got out of it for awhile when I started having the typical depression that goes along with it. I've just gotten back into it, and I'm so glad!! My doc is happy too because apparently dancing is the best exercise for us Alzies.

Also, keep your mind active with other activities such as cross-word puzzles, computer games, meetings w/friends such as Toastmasters (to spread the word about having Alzie's detected EARLY!!!), etc. And -- last, but not least, be sure to eat healthy foods!!!

Thanks ... and the best of luck to all of you early-onset Alzies!