would love to chat bout our problem its no fun an its so so scarry isnt it hope to chat with others like me i amm gonna be 58 may 30th was told right after xmas i had alz would love to chat thanks PHYL

Phyl,
Hello and Welcome. I'm sorry for what brings you here! EOAD is a very scary disease! I'm 54, was diagnosed late last year @ 53 with EOAD/FTD. I had to stop working (couldn't keep up). I'm now on long term disability, also, awaiting social security disability.
This is a great place to talk, share ideas, vent feelings, and get a lot of great support.
Have you contacted you local Alz Assn for help and support?

Let me know how you are doing.

Peace and Hope,

Phyl,
Words cannot begin to say how sorry I am for you. My wife was diagnosed in 2001 at age 53 with Alz. It was devestating to her and me. I pray you have the love and support of your family and friends. I'm sure you'll make new friends on this message board. Please look into joining a support group through a local Alz chapter. God Bless!!

Phyllis, I'm just a couple of weeks short of 53. Diagnosed with dementia last July '07, nobody said aloud the word "Alzheimer's) till this February '08.

What bums me the most is that even though I'm not that far into it, I have more symptoms than most people. Perceptual disorders, we'll call it. Some peripheral neuropathy, too. Insomnia.

Scary? Oh yeah, that!! I'm especially scared that I can get angrier than ever before in my life. That combined with growing dementia & psychosis can't be good. Oh well, just more pills to swallow, right?

Hi my husband was diagnosed two years ago at the age of 56. He is a physician (cancer specialist). I had spent one year trying to get him all the disabilitites he is entitled to. We live in New Jersey and received alot of money from the Wage and Labor Force in one check. But I think you have to apply for this before you get Socail security disability. Worth checking into this. He is retired now. He still drives in the neighborhood and takes classes at the local community center. He also plays golf and every Thutsday is in a tennis league. Keep busy everyone it certainly does help. It does help.

To all of you,

Please check out the Enbrel for Alzheimer's thread. Enbrel is an FDA approved drug for Rheumatoid Arthritis, that has been found to help reverse some symptoms of AD, and then stop the disease from progressing. I am posting here because you all seem to be early in the disease, so there is a lot of hope. It's new, but several patients who have been receiving the treatment for over 3 years have maintained. There are now about 100 people being treated. It has helped my Mom, and I am trying to make sure everyone at least knows about it so they can make a decision. It can't work for everyone, but all except one that I have talked to have seen improvements. That is about 11 to 1. There are now about 10 doctors giving the treatment. They are in NY, FL, CA, OH, KT, IN, 2 in MI, and 2 in TX. Please read up on this and see if it's something that you would like to try. Many doctors don't even know about it yet, so you will have to educate them about the procedure. It is not approved for Alzheimer's, so insurance and medicare do not cover it, but that is what I and a few others are trying to change, and that is why I am spreading the word. We are paying over $3000/month for this treatment for my Mom, and I need it covered or we won't be able to continue. Please e-mail me if you have questions and I will try to help you. Also, a few of us have put up videos on youtube of our Loved Ones. http://youtube.com/user/famc17, http://youtube.com/user/tumates,
http://youtube.com/user/armoandleo11

My prayers are with all of you,

Felicia

is this treatment you are talking about better than aricept?

Hi S Wiley,

I don't want to say Aricept doesn't work, because some people do OK on it for a while, but Mom could never tolerate it, and even the doctors know it at best slows down the disease, but not that much for many people. So, in my opinion, it is much better. But it is also much more expensive, hard to find and considered an off-label treatment because it hasn't gone through a clinical trial yet.

After the injection, most feel a difference right away, a bit more energy and happier. I think that is a side effect of the drug. Many who were not too far into the disease said they felt like the "fog" had been lifted. All the symptoms don't disappear, but there is usually an improvement weekly for the first few months, and then a true maintenance...that's the part I'm happy about. It gives us time to wait for a cure.

There are a lot of issues about it regarding the doctor who invented it (Dr. Tobinick, a dermatologist) and the drug company who manufactures it, Amgen.

We've had our own issues within the forum, and before I get scolded for being "off-subject", I'll just refer you to the Enbrel for Alzheimer's Thread. It is very long though, so you probably won't have time to start from the beginning! Ask questions, and I bet you'll get lots of replies, both pro and con.

If you look up biblecats responses, you can see that she was the first one to speak out regarding how her Dad was doing with the treatments. Her Dad is Leo, from the youtube videos.

Thanks, Felicia

Thanks for the info, I will go to that thread for more Enbril information.

Enbrel Team, Attack!! Yes, today a team of three Enbrel propagandists hijacked a thread started by a grieving Alzheimer's patient. Pathetic beyond belief . . .

Well yes many of us are here w/Az - am sorry for those who are caused distress when they find out they too have Az. I am trying to live, give, and enjoy this day. Know from much experience that what I have today may be gone tomorrow. Certianly the ability I had last year is significantly more than today. Want to be loved and talked with as before. The community and family seem to be retreating as my need for contact increases. Thanks for reading this MToddL

Why is it considered an attack when you are trying to help people?

And when some of those people ask a question because they have an open mind, shouldn't I respond to them? And maybe it hurts me as much as you to see people grieving and so I do everything in my power to try to help them. To see my Mom not ever going to be herself again, and to cry and weep all morning because of people that want you to be in more pain.

Thanks for the love and understanding.

I for one am open to all ideas. It's best to be informed and then make a decision, rather than not know about something that may help.

Thanks.

MTodd,

The community here will always be somewhere you can turn. Have you tried finding a community of EOAD in your area? It's well worth it to find people who understand what you are going through. And you don't have to feel "unusual" or "different", many say it makes them feel much more normal, which is what many people need.

Hi Lisa and anyone else that would be willing to comment,

Just curious ...... Did you ever get your Social Security Disability and if so how long did you have to wait? I have just applied and everyone keeps saying to expect to get denied the first time.

Remember, God Loves us all.

Lynn