My name is Julie. I'm a graphic design student from Ontario, and I thought I'd just make a request... send it out there to see if anyone would be interested in helping me. O
ne of the projects that I am working on for school is to create a book, poster or other form of communication to raise awareness about an issue that is important to me. I lost my grandmother to AD in 2006. She was the strongest and most beautiful woman I have ever known and I miss her a great deal, so when I got this assignment I instantly knew I wanted to do something related to AD. I would like to create a book that explains what AD is really like. I find that whenever I ask someone about it, all they seem to know is that it is a disease that causes you to lose your memory. I know it is far more than that. The later years I spent with my grandmother are proof.
I would like to put together a collection of stories, or definitions I guess, about what AD really is. If you had the opportunity to explain it to someone in simple terms, what it means to live with it, or to experience it. What people don't understand about it. Or the one thing you wish people just knew about AD. I would really appreciate it if you could just write a sentence or two in response. Answers are annonymous, unless you would like to include a first name. Please contribute. It would mean a lot to me to be able to put some faces to this terrible disease. I want people to know that it isn't just something out of a textbook. Any answers are greatly appreciated. Thank you so much for reading this.

I AM A REGISTERED NURSE AND HAVE SPENT MY ENTIRE 14 YR CAREER WORKING WITH AD. TO BE ABLE TO EXPLAIN THIS DISEASE IN A FEW SENTENCES IS IMPOSSIBLE. YOU WILL FIND A WEALTH OF INFORMATION ONLINE, BUT TAKE TIME AND VOLUNTEER AT AN ASSIST LIVING OR NURSING HOME. WORDS CANNOT EXPLAIN THE KNOWLEDGE YOU WILL GAIN. GOOD LUCK ON YOR PROJECT

I understand that its an incredibly complicated disease and that there is no one answer for it. I have been doing research through a great deal of resources and I know from my own experiences as well. I may not have been a caregiver for fourteen years, but I was still affected by AD. I wasn't looking for a summary of everything that it stands for in one sentence. I just thought that putting together a few statements or stories from people who live with AD everyday would help to put a face to this disease and make it more human to those who believe it is something that simply causes you to forget.

Hi Julie Maybe you can use some of my thoughts on this as you say you are doing research My husband has it however ive been researching some and even sent an email to Larry King Reason being I also have an atustic grandaughter and many of their symtons are alike so as they claim the imune needles may be a cause i got to thinking they also get the flu shot looked up whats in a flu shot and its some of the same stuff and as you know most seniors get the flu shot my question is there a connection? if you like to keep in touch i can give you the info i sent Larry King my husband is 75 my grandaughter 14 any questions you would like to ask me id be glad to answer if they would be of help good luck Doreen

I am a caregiver for my 76 year old husband. This is a terrible desease. Our doctor says that he is in stage 3-4. My husband knows what he is doing, but he cannot help it. He cannot read, write watch tv, because he cannot keep up with it, use the phone, he is too slow the operator keep cutting in. He doesn't know what utensil to use when he eats.Choose his clothes to dress. He knows he is doing this, But he doesn't remember. It is hard for me, but I will keep trying.

Dot

My impression of AD in the beginning was "loss of memory" but it's so much more than that. My best definition is that my husband (75) can no longer "connect the dots." He was an engineer, very intelligent, and I feel the loss of that mind is so tragic. He simply can't reason things out and it's hard to deal with that. Your expectation is that he will react the way he always did and, of course, he doesn't. There is no logic left. It's almost like having a two-year-old again. I think stressing that lack of logic would help people understand the disease more. There isn't a lot of communication, so I value what we have left. Good luck!

The tricky part of this project for you would be the extremely varied nature of the disease. I have cared for my mother since she was diagnosed ten years ago and each stage of the disease brought a whole new set of issues and problems. The only thing I think will carry throughout this disease is the strength of touch. Hugs, kisses, and holding hands has given my mother the solace she couldn't find or express. Our loved ones need physical contact especially as they lose the ability to make contact verbally. I hope to see your project when it's completed.

Alzheimer's is a disease that progresses and leaves a person with no memory. Memories is what we all have and we cherish. Memories make up our whole being. This horrible disease strips you of everything you ever were & everything you ever dreamed.

Julie,
As you now probably know, it's not just memories of people, they even forget how to walk or sit down or eat. They forget how to go to the bathroom, speak, and eventually have no interest or ability to do anything. It is a devastating disease to both the patient and the caregivers. How sad it was to watch this happen to my beautiful Mom, and to have no hope.

But, I have now found hope and my Mom is improving. The treatment is called Perispinal Etanercept. If you're still working on this, you may want to include a chapter on Etanercept (Enbrel) for Alzheimer's. A controversial treatment that is REALLY working, but has hit so many walls it's astounding. I personally believe in the Drug Company conspiracy which is truly troubling me, an optomistic trusting person my whole life...until the last few months. Please see the Enbrel for Alzheimer's thread in the Medications and Treatments Board for some interesting issues!

Anyway, and more importantly, the treatment is working, and more and more people keep showing up on this forum to share their excitement. We need to spread the word!

Please see the thread in this forum in Medication and Treatments/Enbrel for Alzheimer's. Please see our before and after youtube videos at:
Watch them in date order for best impact!
http://youtube.com/user/armoandleo11
http://youtube.com/user/famc17
http://youtube.com/user/tumates

Dr. Tobinick's Website: http://www.nrimed.com/

Young people like you can help to make the difference in our future.

Good-Luck, Felicia

Julie,
I wrote a song that tells what it was like for me. It is at CDBABY.COM/CD/MATTSIMS and is song #6, "DRIFTING AWAY" -- You are welcome to use it.

Julie, a few sentences or words to describe AD. EXHAUSTION. i am 31 and have 4 kids. I care for grandma sunday afternoon through wednesday, 24-7. My mom does it the other days. We live next door to each other, and it helps. Also, i feel that my four children, and their many friends are learning aALOT about COMPASSION. Grandma is in the 7th stage. She is on hospice. I get FRUSTRATED, then comes the GUILT. I love her so much it hurts. I kiss her every night and hope it is not her last, then hope that maybe it is so she won't hurt, then feel SELFISH. I HATE THIS DISEASE!!! My nine year old helps to change her bed clothes, and wash her and her clothes. My 11 year old kisses her in front of his friends and dares them to say anything(they don't) so, to sum it up, LOVE EXHAUSTION COMPASSION FRUSTRATION GUILT SELFISHNESS but most of all LOVE.