Hi to All,

I'm sick to death about everyone referring to EOAD/YOAD as being rare!!!

If it's SO RARE then why are there so many of US our HERE!!

And, OUR numbers are still growing!!!!

Me too Lisa.These people sure need educated.FIRST,They have to pay attention,lol......

I was involved in work that involved treating sexual abuse of children in the early 1980's. Over just 4 years, the office I worked in went from handling 2 or 3 of those referrals a month, to about 70 a month.

I believe that a similar statistical explosion is now taking place with early onset dementia. I believe that the more we get the information out there, the more people will start to recognize it in themselves and others.

I hope I'm wrong.

I agree with both of you!

EOAD/YOAD needs MUCH more press and a NEW FACE!!!

Lisa, by a "new face," do you mean a celebrity? That one's hard to predict, as far as actually changing peoples' behavior.

When Rock Hudson died of aids, that got a lot of Hollywood involved in promoting aids treatment research. Did President Reagan's Alzheimer's lead to a bump in research? Or Charleton Heston? I don't know. I wonder who would have to be sacrificed to AD and related dementias, that it would really matter?

I just don't know what, or who, it would take.

Hi Lisa, I understand how you feel. When someone says to me that they didn't know it could happen to someone so young or that it is rare I give them the old National Statistical speech about how there are 5.3 million AMericans diagnosed with Alzheimer's or some form of dementia and that over 500,000 of those are people under the age of 65. ANd then I tell them there are over 250,000 kids ages 8-18 in the caregiving role. Needless to say that when I get done their thoughts are very different. Give it a try when you have the chance.

Tracy

Hi Guys and Gals,

Perhaps the commercials need to use younger people like Tracy or Mary P. that way the public could realize that AD is NOT just an older person's disease!!

What to ya think?

I don't know what it takes to get people's attention, and then to hold it long enough to make a point. Well, not something that's practical and legal . . . . .

I think if I could make people watch & learn from something, I'd want them to watch an Early Onset, Early Stage group, talking about their lives, their hopes and fears, and mainly just how their day-to-day life flows.

Folks, I have dreamed up this idea for a show where people with EO, ES & MS come and share their stories to the world. It would be a talk show just like others you have seen except this would only be for dementia. There are so many different types of dementias to share and then the audience could ask questions. People could even bring their doctors with them to back up their story. Anyone interested in this? Do you think we could get National to pick up on someting like this? My husband doesn't think it would draw enough attention but I think that he is wrong. What do you think? ANyone think this is worth while feel free to contact me.

Tracy

Hello this is Karin and could you email me at my home to let me know how to use this site please, I have vascular dementia and I'm only 61 years old so what are you folks talking about. bbarreau@charter.net thanks

quote:

Originally posted by Holland:
Hello this is Karin...
let me know how to use this site please, I have vascular dementia and I'm only 61 years old thanks

Hello Karin,
My name is Tom and I volunteer on this site. I 'm 60 yrs young and have Early On-set Alzheimer's. Im sorry for what brings you to us but happy that you found us.
It seems to me that you have already figured out how to use this site. We are all here to support you and please ask questions if you have any.
To start a new topic just move your pointer over "Start a new discussion" and click on "Discussion". You will be promted to name your dicussion and you can make the original post.
Hope this information is helpful.

quote:

Folks, I have dreamed up this idea for a show where people with EO, ES & MS come and share their stories to the world. It would be a talk show just like others you have seen except this would only be for dementia. There are so many different types of dementias to share and then the audience could ask questions. People could even bring their doctors with them to back up their story. Anyone interested in this? Do you think we could get National to pick up on someting like this? My husband doesn't think it would draw enough attention but I think that he is wrong. What do you think? ANyone think this is worth while feel free to contact me.

Tracy, with over 100 little cable channels, seems like somebody would be interested in your show idea. I'm not sure about the next step, but it might be getting an agent who knows the ropes.

quote:

Originally posted by younghope1:
Folks, I have dreamed up this idea for a show where people with EO, ES & MS come and share their stories to the world. It would be a talk show just like others you have seen except this would only be for dementia. There are so many different types of dementias to share and then the audience could ask questions. People could even bring their doctors with them to back up their story. Anyone interested in this? Do you think we could get National to pick up on someting like this? My husband doesn't think it would draw enough attention but I think that he is wrong. What do you think? ANyone think this is worth while feel free to contact me.

Tracy

Tracy,
What a great idea. Count on me for help!
your husband might be correctg but there is no way to win if we don't try. Im just concerned that my story won't be beleiveable' When I am "with it" I sound an d act close to normal. When I am tierd or sundowning I won't let anybody near me. I'm just plain miserable and can't seem to put together a sentence without a 30 second pause or two to find the right word. I would only go public if my doctors would join me with all of their technical proof.
Then there is another road block to get over. I can't drive and sometimes forget how to get where I'm going (if I recall where I'm going or why)' There is a lot to manage. I know that I'm not capable to make my own case and present it.
We need a professional to get invollved up front.

quote:

Originally posted by Alan in Colorado:
Lisa, by a "new face," do you mean a celebrity? That one's hard to predict, as far as actually changing peoples' behavior.

When Rock Hudson died of aids, that got a lot of Hollywood involved in promoting aids treatment research. Did President Reagan's Alzheimer's lead to a bump in research? Or Charleton Heston? I don't know. I wonder who would have to be sacrificed to AD and related dementias, that it would really matter?

I just don't know what, or who, it would take.

I don't know what it would take either, people either treat you like an idiot or turn a blind eye to it.
Carrie

Mimi S. was just in a video put on by PBS. Maybe she could help with this.

She has a thread on it here:

http://alzheimers.infopop.cc/e...=148103402#148103402

Two of the members of the last year's Early Stage Advisory Board are in a PBS show, The Retiremnt Revolution, to be aired next Tues the 15th at 9 eastern time. Be sure to check your local station. Not to bury it, but my station is airing it at midnight!
you can get a preview by clicking on:

http://www.pbs.org/wttw/retirementrevolution/watch/ (3rd segment down, Living With Alzheimer's

Tracy,

Count me in too!! I'm not sure of the next step either? Most people are afraid of AD or dementia. Do you think we could find an audience??


Becky,

Thanks for the info. I know it's tonight. Is it on all PBS stations?

quote:

Originally posted by Lisa 428:
Hi to All,

I'm sick to death about everyone referring to EOAD/YOAD as being rare!!!

If it's SO RARE then why are there so many of US our HERE!!

And, OUR numbers are still growing!!!!

Please reply on the following thread so our thoughts on the subject can be captured in one location.
http://alzheimers.infopop.cc/e...11002361/m/700105402

Lisa, sorry I just now saw this post again.

I'm in California and it is on the PBS channel at 9:00 PM. It is probably that time where you are right now, so I hope you found it. It's 6 PM here now, I think you are three hours ahead of me.

If you didn't find it, you can watch it from the website I posted.

Becky,

I missed it. I'll try the website.

Thanks.

Hi to All,

I saw another commercial from the Exelon patch and it's about "Mother" again!!

I'm so sick to death about all commercials showing only older people (no offense to anyone)!!

What about US??????? I use an Exelon patch and Namenda!!

Hey,

Has anyone else seen that commercial or any commercial with someone without gray hair??

No offense to anyone but we need to show YOUNGER people who have EOAD/YOAD!!!

What do you think?

Lisa, not to be cynical or anything, but the purpose of ads is to sell product, not educate. There are ten times as many people over the age of 65 with AD as under the age of 65 with AD. Where would you put your advertising dollars if you were selling Exelon?

Dear JAB,

Point well taken, However, if they want to slow down this monster they better start looking at us before it's too late for others!

Good points all around. Here's my favorite point about commercial tv:

All the shows are there to lure you into watching the commercials.

Hi Everyone

Wow! What a topic! I have been reading these posts and I agree with Lisa...there must be a way to "promote" EOAD!!!!!

There is too much ignorance about this disease. What's really sad, it is not only the gerneral public, but, the physicians also!

I just got back from my pc. She has ordered another MRI to see the back of my brain and the hippocampus. My gait, of late, has been realy bad. Does anyone walk with their legs wide for balance?

She is also sending me to PT to help me "correct" my gait. She stated that I "can be retrained to walk"! Not sure what that means....
M

Mary, my peripheral neuropathy has killed most nerves below my knees. So, I can't walk in the dark, because I can't feel my feet on the floor.

I don't walk wider for balance. What happened on its own with me is, I take shorter steps. Even in daylight, I still stride a little shorter, enough where a wife and friend have commented on it.

Another MRI? Oh, joy . . . noisy 1950s washing machines, that's what MRI reminds me of, with a UFO landing mixed in. They don't usually show much if anything wrong with us, in the early stage.

Alan
LOL... "1950's washing machine"!!!!!!

Want to know something realy strange? I actually fall asleep in those things!

Yes, I too, take shorter steps. I'm not sure if that's to compensate for the wide gait? But, I think the worst is, (this is going to sound vain) I can no longer wear high heels! Frankly, I no longer care....I'm just tired!
M

Taking shorter steps can cause you to fall.....

Hi to All,

I saw my neurologist the other day and I have declined! (I knew that!) Fortunately or unfortunately I'm still aware!

Tomorrow I go for another EEG and MRI. Can't wait for that 1950's washing machine! lol.

Hi Lisa

Unfortunately, the "1950's washing machine" doesn't rock back and forth....to lul you to sleep!

Doctors. Don't you love them. I told my primary that I no longer want to go to a neurologist. I'm tired of "Dr. jumping"? She told me she would conference with the neurologist as necessary, but, I will most likely in the future, may "need to go on back to the neurologist"!

M

quote:

I saw my neurologist the other day and I have declined! (I knew that!) Fortunately or unfortunately I'm still aware! Tomorrow I go for another EEG and MRI. Can't wait for that 1950's washing machine! lol.
Peace and Hope,
Lisa

Lisa, ever wonder why we see our doctors? A year or two ago, I started seeing my doctors as my biographers. They update their narratives, and send me back into the world for more adventures. They'll dodge questions about the future, and at least one of them will advise me to not think about my future.

I, too, am tired of doctor visits. I see my PCP next week, because there's an appointment. I'm a little worse than 3 or 4 months ago. Just like I was a little worse the last visit, and the visit before that.

Lisa, I look forward to learning your test results.

Alan,

I have come to look at all these doctor's appointments as trying to help others! I don't really think there is much hope for me but perhaps some doctor notices some signs or symptoms and writes them down. Then, further down the line he/she notices a pattern of some sort. Perhaps this will help the people coming behind us?? Who knows what can happen?

I'll let you know my results when I receive them.

Hang in there, Alan.

Oh P.S. My new bike was stolen last night! "If I didn't have bad luck I wouldn't have any luck at all!"

Sorry about your bike Lisa! That's not fair! Was it stolen from your home? In my city the police will come out and do a security check of the home and give pointers on how to make the home more secure. Does your neighborhood have a Neighborhood Watch program?

Iris L.

Mary, please try to find a doctor who can help you. I had to search far and wide to find some who could help me. I have doctors who are treating my chronic pain/chronic fatigue/chronic sleep disorders in addition to the cognitive disorder.

Even though I am under 60, I am seeing two geriatricians. I think they are better for us. Internists are more focused on treating disease pathology than on improving patient function.

In any case, get some rest. You're under a great strain right now.

Iris L.

[QUOTE]Originally posted by Lisa 428:
Alan,

I have come to look at all these doctor's appointments as trying to help others! I don't really think there is much hope for me but perhaps some doctor notices some signs or symptoms and writes them down. QUOTE]

Hi Lisa,

I have even taken copies of reference materials found here on this and other boards to my doctor about EOAD. She only has a couple of us and I figure I can help educate her. She says she appreciates it. I took one to my cardiologist about the higher incidence between A-Fib and Alz.

Sorry about the bike. Two steps forward and three steps back it seems sometimes.

Lynn

Hi Lynn, Iris, Mary, Alan et al,

I think I'm in a blue funk! Not totally depressed but not really happy. I've been laid up with this painful leg and I don't know, I think I'm taking 1 step forward and 6 steps back these days!

I guess, some days, life just sucks! huh?

I'm going to sign up for a drug study tomorrow. Can't drive, a friend is picking me up!

I'll let y'all know what happens.

I'm trying to keep on hanging on.

{{{{{HUGS}}}}} to you Lisa!

Iris L.

Lisa I hate it when that happens.You get a new bike,say hey I like that bike,then POOF it is gone..Dang! Enjoy life,this is not a rehearsal.
I will be most interested in the drug study.Is it a Clinical trial?
What is meant by rare is compared to millions of cases.You are one of a half-million Americans with early-onset Alzheimer's, people under 65 with the disease compared to 5.5 million. Ten percent of all Alzheimer's patients get it early - the youngest on record was seventeen.Actually I think there has been a 12 year old diagnosed since then.
In 1901, Alzheimer observed a patient at the Frankfurt Asylum named Mrs. Auguste Deter. The 51-year-old patient became the first to be diagnosed with Alzheimer's Disease.So rare as in unheard of? No.How can something with a half a million in its ranks be considered rare?Just compared to 5.5 million it is rare.If you are one of the half a million or a family member,friend or caregiver Early Onset is not so rare.The reason people don't know more about it Is because it is a deep dark place that no one wants to go to unless they are forced.Think of it How many people have you met on here wanting to learn about Alzheimer's unless they or a love one has it? No one wakes up to see a commerial to say "Alzheimer's? What is that? I will get involved and find out all about it and become an advocate for a cure." And even worst not one of my residents family are members of the Alzheimer's Association and when I ask them for donations for The Memory Walk they look at me like...I am crazy.My residents don't know what Alzheimer's is...much less care if we find a cure. So it is up to you and I.Cure Alzheimer's and the Early Onset Alzheimer's will be cured also. Do not isolate yourself to smaller numbers.Congress members should be getting a half a million letters and 5 million more letters demanding to fast tract the cure for Alzheimer's.Pay the caregiver.Give the EOAD their disability benefits without the confusion and hassle that usally goes with collecting.Let congress know there are 5.5 million of us watching them.That's one for every Alzheimer's Patient in America.I have 18 residents and 1 mom that can not write letters.I only count for one so I need to find 18 more advocates.Let's not be considered RARE in Congress.
HUGS! Marcus
Look for something that makes you Smile,it helps you feel better.

Hi Everyone

Lisa, I'm sorry to hear that your bicycle was stolen. People. You just never know.

I too go thru the "blues". Not quite depressed, but, still not me. What do you do to get out of it? Me, I try to distract myself and I find that I make more "trips" distracting myself.

I went to PT today. My daughter is still acting like she is "on her game" with others when it comes to me, but, once we're alone, she is very distant to me. You'd almost think I had the plague! She won't converse with me, instead I get direct answers only.

Does anybody out there have the same problems with a family member? How do you handle it? We are losing precious time that can not be recaptured....
M

Lisa, you know the song that fits? Bruce Springsteen, "One Step Up and Two Steps Back." The musical antidote would be, Journey, "Don't Stop Believing."

Mary, as for depression, I think about the difference between depression and sadness. My condition makes me sad when I think about it, or perhaps even angry. But, I can still enjoy things when that fits. I don't think I'm depressed, but I acknowledge that there's a lot to make me sad.

quote:

Originally posted by Alan in Colorado:
Mary, as for depression, I think about the difference between depression and sadness. My condition makes me sad when I think about it, or perhaps even angry. But, I can still enjoy things when that fits. I don't think I'm depressed, but I acknowledge that there's a lot to make me sad.

Alan, can the opposite be true? Can you not feel pleasure, but not be sad? In other words, must you feel sad to not feel pleasure?

I don't feel sad or bad about myself. I get discouraged at times. But I have lost much of my interest in things (the outside world) except reading these message boards and chatting. Is this depression?

JAB posted once about the distinction between depression and apathy. Does anyone remember that?

Iris L.

Iris, I don't have much else in my life anymore either. I have trouble every day getting up and doing something. Not that there aren't a zillion things to be done in the house, but I still don't get much done. Today I got up and it was 9 am the next thing I know it is 4:30 pm and the day is gone.

Iris, sure, I can still feel pleasurable feelings. I don't believe that feeling, & things like sense of humor, are as strong as when I was healthy, but it's alright.

As for interest in the outside world, I've noticed I'm losing some of mine. Between trouble understanding, getting irritated, I'm better off without it. Regarding are you, Iris, depressed, all I can say is that is not my impression of you. You come across as intelligent and compassionate.

But, I'm assured by my doctors that putting myself out there, interacting with people, is something one must do, to slow down the dementia process. So I go exercise 3 times a week, and to coffee with a friend at least once a week.

Apathy is a nice, neutral emotion. Sort of a private parking area. It's a great break, but I wouldn't want to be stuck there.

Cheri, boy do I know about having a zillion things to do, but blink my eyes and it's 8 hours later!! That's our Executive Functioning in our frontal lobes going all fizzy on us, I think. I'm still embarrassed at how I can make a to-do list like I have for over 30 years, but not get much or any of it done.

[QUOTE] Originally posted by Alan in Colorado:
Apathy is a nice, neutral emotion. Sort of a private parking area. It's a great break, but I wouldn't want to be stuck there. [QUOTE]
Wat a fantastic and brillant analogy! Me right to the T in Tom


Yet another observation by Cheri B. I have this same problem due to lasting effect of Seroquel in the moprning and sundowning in the evening. this is excentuated by depression I'm sure.
Today I got up and it was 9 am the next thing I know it is 4:30 pm and the day is gone.

quote:

JAB posted once about the distinction between depression and apathy. Does anyone remember that?

I do.

Depression is often confused with apathy, which is actually a different problem and requires a different treatment.

A depressed patient is generally very sad, tearful, and hopeless. Many AD patients develop depression, and doctors are used to prescribing antidepressants to them, such as the selective serotonin re-uptake inhibitors (SSRIs).

An apathetic patient lacks emotions, motivation, interest, and enthusiasm. Apathy affects up to 70-80% of AD patients, yet most doctors either aren't aware of this, or don't make the distinction.

A number of studies have been done or are being done on stimulants such as Adderall or Ritalin to treat apathy. See:

http://app1.unmc.edu/publicaff....cfm?article_id=1840

http://www.psychiatrictimes.co.../article/10168/56746

http://findarticles.com/p/arti..._14_39/ai_n29283269/

quote:

Originally posted by JAB:
[QUOTE]JAB posted once about the distinction between depression and apathy. Does anyone remember that?

I do.

An apathetic patient lacks emotions, motivation, interest, and enthusiasm. Apathy affects up to 70-80% of AD patients, yet most doctors either aren't aware of this, or don't make the distinction. A number of studies have been done or are being done on stimulants such as Adderall or Ritalin to treat apathy. [quote]

Oh My Gosh JAB.

Thanks for posting this. It came at the right time for me. I am taking Adderall now for concentration etc. But reading these comments help me understand, it is not depression I am experiencing now. It is APATHY! I think I am totally apathetic toward my life, friends, future. I won't say I have given up, but I have been saying "It Is What It Is" thinking that was a good attitude. Now I think maybe it is a LOSER Apathetic attitude! Is apathy an attitude or symptom of AD? Great, another question.

The Adderall does help me get through the day. Helps me get my act together and accomplish something. It helps with "Get Up & Go". But, it scares me! I don't know what a "normal" dose is. The few people I have told about this seem to think it is a high dose. (Their eyebrows went up when I told them.) I started out with 10 mg X 2 doses. One early AM and one around 12:00-1:00 PM.

We have been working on the proper dosage for me. With the Psychiatrist's approval, I now take 30mg 7:00-8:00AM and bump with 20mg later, if I feel it is necessary. She, assures me that everyone is different with their need. She wants me to take the 30mg each day as scheduled. I don't always take it. This drug scares me. I am scared of addiction I guess. Or maybe the embarassment of taking it. Only if I have a busy day or need to really concentrate and get something specific done do I take it.

Am I working with fire here? Anyone else taking this or Ritalin? If so, what is your dosage? Does it help? Thanks everyone for your help.

Thanks

Lynn

Alan, I think I would like to interactive with something, but I'm alone during the day and afraid to go anywhere because I might get lost. I can't drive and everyone I know is at work during the day so they can't take me. Any suggestions?

Hi Everyone

Went to PT today. Interesting session, my therapist stated that my wide gait is possibly from the "mini strokes" and/or the shrinkage of the brain.

The PT stated, "we will re-train the brain to get the gait back to what it was, and then your strides should be longer once again"!

Now I have to sit on a chair with "ankles, knees, hips and shoulders in alignment". I'm to do this at 5-minute intervals.

I can not even begin to tell your how bad my head hurts, during PT and now. I could actually feel the "pull/pressure(?)in my head!

I never actually noticed how difficult it is to do the above exercise without difficulty.

M

Just checked this out posted by Rosas daughter on another thread.

Warning you will need a tissue, very sad. But the word is getting out slowly but surely.

http://longisland.newsday.com/projects/alzheimers/

http://www.newsday.com/news/he...ong-island-1.1507161

Forgot to post link to Rosas Daughter thread:

http://alzheimers.infopop.cc/e...=277104622#277104622