Hi,
I'm Lisa, I'm 54 and I have EOAD/FTD. I was diagnosed in 2007. I use an Exelon patch and take Namenda 2 x d. Also, take otc supplements. On disability, unable to work, but can still drive (most of the time).
How many people like me are out there? I'm trying to get an idea of how many of us are out there.

Would you please write me and let me know?

Peace and Hope to All,

How come no one is responding? I'm just trying to find out how many people like me are out there?


Peace and Hope,

Hi Lisa,

My name is Lois, I am 46, and do not have symptoms - at least yet. One of my 7 sisters was diagnosed two years ago at age 54. Her symptoms started when she was 51. She had genetic testing which confirmed the familial early onset. There are 13 in my family, oldest 59, youngest 40. So far Betty is the only one who has symptoms, but we all know it's just a matter of time before more of us will have it.

I don't know how many with early onset have family history. My mom had it and 4 of her 7 siblings did.

You are not alone.

LOL711,
Thank you so much for responding. I'm sorry about your sister and you family history. I am doing some volunteer work for the Alz Assn trying to assist them in starting early onset groups in many places including my own. I'm trying to prove to them that there are MANY of us out there!

Please, keep responding!

Peace and Hope,

Lisa, maybe some readers are like me, and don't understand your question? Are you looking for people just like you?

I'm about a year younger than you, but I don't have that patch or take Namenda. Does that exclude me? I'm in the application/examination phase of SSDI, I expect I'll be approved sometime this year, can't work, can drive some of the time although there's active questioning of whether I should.

I have EOAD, plus a number of other neurological problems. There's been some discussion of whether I might have some Vascular Dementia going on, but I'm not interested in more tests. Like, what if I have both? Do I root for one to go faster than the other? (Meant to be funny!)

Let me know if this response was in the general area of what you're looking for?

Dear Alan,
Thank you for responding. Perhaps my question was not clear. I am looking to find out how many people suffer with early onset dementias meaning people diagnosed BEFORE age 65. I am trying to get the Alz Assn. to start or expand early onset groups because I think there are a lot of us out there who would love to have a group to go to. Also, could meet people closer to their ages to support each other, exchange ideas, or just meet and talk!
Is that any clearer? I hope so. I, also, hope many people will respond so that I can use numbers of people and locations to assist the Alz Assn in starting MORE early onset groups. It doesn't matter what TYPE of dementia the person has. Age and stage matter!

Thanks again Alan,

Peace and Hope,

I was diagnosed with FTD but I had a pet-scan and found out it is something more rare. My wife understands it, that's all that is important to me. I am fine most days. I don't have cognitive things going on, but there are strange things happening to me. For instance, if I have something in one hand, it is very hard to get it to the other. I can't do cursive anymore, so I can't sign my name. It is getting extremely difficult to type on the computer, but that is the means of communication now.

Dear David,
Thanks for responding. I am sorry for what brings you here! You didn't say when you were diagnosed with FTD or how old you are? Do you have an support group in your area?
Please, let me know.

Peace and Hope,

I am 58. I was diagnosed with FTD just this year. We have a great support network in Lincoln, even an early onset group that I attend regularly. I hope you have the same.

Dave

Lisa,
I have EOAD, I'm 50 and was diagnosed in 2007. Even though I have been working toward this diagnoses since I was 45. I still drive but just in my neighborhood. Since my job was very complicated I don't work anymore, I have applied for disability. I still do lots of other things, such as sew, crochet, garden, volunteer with our neighborhood association. I have a very active life. Good luck you’re your Alz group, I just went to mine and the lady was reading from a first grade storybook! Not my idea of fun. I would like to talk about issues pertaining to real life.

Natalie OH,
Thanks for responding. I'm sorry for your diagnosis of EOAD. If I may ask, do you have an Early Onset group where you live? Where do you live?

Keep in touch,
Peace and Hope,

yes, we have the Alz group from Akron, Oh. come down to canton where I live. The last meeting they were reading the velveteen rabbit and tying that into life somehow. What I wanted to talk about was the early onset forum that is going to be in Cleveland May 31 and how I should approach being a speaker there. But this was not addressed. Most of the people in my group are more progressed than I am and I stick out like a sore thumb.

Natalie OH,
Is your group an early onset group ( people diagnosed before age 65)??

Please let me know

Thanks,

Peace and Hope,

Hi my husband has EOAD. Diagnosed about two years ago at the age of 56. He is a physicain who is retired now. It is not anywhere in our family. his mom is now 85 with slight dementia. His father is 93 and is sharp as a tack. We live in New Jersey. We applied to the wage and labor force of our state and received a nice one time check. I was told to apply for this before ssdisability. Check into this in your own states. Good luck to all and keep busy as it has certainly helped him.

I am 63 and have EOAD and can't find any meetings in my area. Most are a couple of hours away. Would like to have one close. I feel so alone.

Hi Lisa,
My husband is 58 and was diagnosed in late 2007 with EOAD. My MIL had AD and lived with us until she passed away last June at age 81. But it is very different when it is your spouse and it is early onset. He is on Aricept for right now and doing as well as can be expected.I some times still play the guessing game of "does he really have it?" But then he does or says someting that gives me my answer.

Please remember to take care of yourself through this difficult time.

Lisa
The group is for early onset first stage no age goes by diagnoses.

Dear Twinie,
Thanks for responding. I'm sorry for what brings you here. Do you know if you have an Early Onset Alz. meeting in your area? I am trying to find out who has them and who doesn't. If you don't would you like an EOAD meeting in your area?

Please let me know.

Thanks for the info.

Peace and Hope,

Hello, My husband has EOAD. He is 46 now was diagnoses 2 years ago. We don't know anyone his age but our teenage son is going to a camp this summer for kids w/ parents w/ EOAD. He doesn't drive any more and - well, I don't want to be depressing. We try to hold on to moments that are good and thngs he can still do.

Dear Susan,
Thanks for responding. I'm so sorry about your situation. Do you and your hubby attend an Early On set support group? If there isn't one in your area, would you like one? Would you both attend?
Please, let me know.

Good Luck

Peace and Hope

Dear Annie44,
Hello and welcome. I'm sorry for what brings you here. Your husband is very young. It's very sad. Apparently, you do NOT have an Early Onset support group in your area? Would you like one? Would you both attend?
Please, let me know.


Please, hold on to those special moments!

Peace and Hope,

Natalie,
Sounds like you are attending an Early STAGE support group in which people can be ANY age. Am I correct? Patients with Early ONSET Alz need to be diagnosed before age 65. I am trying to find out which type of group this is. Don't misunderstand all Alz support groups are wonderful!! I am trying to assist the Alz Assn. in starting up MORE Early Onset Alz. disease (EOAD) support groups so that ALL of us out there will be able to speak with other people LIKE us and nearer our ages.

Please, let me know.

Peace and Hope,

Lisa,
No we do not attend a Early On set support group as I can not find one here. I do go to a regular AD group though.

My husband may attend a EOAD group but I am not sure. And yes I would be interested in starting one.

Lisa
You are correct my group is an Early Onset. My concern with the group is that the people in the group are not my age. I am the youngest and most active in my group. I know that there are other people like me in my area, but when they come to our group. They only see older, more advanced people and it frightens them away. You know there are other boards for people with EOAD. Maybe you could post your question on those too.
Keep the faith
Natalie

Dear Susan,
Thank you for responding. Have you spoken with your local Alz. assn about starting a EOAD support group? If not, please call them ASAP. Perhaps you can find out about how many people suffer with EOAD in your area? I think it is imperative for people with EOAD and their families to be able to meet with people nearer their ages and closer to their stages!

Good Luck

Please, let me know how you are doing!

Peace and Hope,

Dear Natalie,
I think your group must be Early stage if the majority of people are much older?! Most Early-Onset Alz support groups have much younger people and mostly less advanced in their disease. Please, speak with your local Alz Assn about starting an Early-Onset group for people like you. Try to find out how many other people like you live in your area. The Alz Assn has great counselors, social workers, and lots of friendly people there to assist and support you.

Good Luck

Please, let me know how you are doing.

Peace and Hope,