Hi Friends! Brief background: I was diagnosed almost four years ago. Between multiple neurologists as well as neuropsychologiests there too, the medical community is convinced. I was years ago since I'm the fourth generation on my maternal side to become a victim. Here's a simple abbreviation: NSS (for "No Sh!t Sherlock) since most medical quasi-professionals are about five years behind the research!

Anyway, I found out that with ETHICAL companies, you can tell their employees that you have either Alzheimer's or Early-On Set and they will go out of their way to help out in communications.

It's the UNETHICAL companies like SONY that presents a perfect case study. My wife asked me to help set up our modest home entertainment system (modest thanks to FICA-Disability income). This is a confusing process for normals, let alone us guys/gals. I followed the manuals--no help. I email customer service--they sent a pdf file of the manual. Then I call SONY and I got the lowest form of life. He spoke really fast--even when I was healthy, I would have asked a similar question: "Would you please repeat yourself--I have Alzheimer's?" His reply: Hel (wait 10 seconds) lo (wait 10 seconds) This (wait 10 second)...you get the idea. Mocking me because it takes me longer to process information is reprehensible.

I called the corporate office in NY #2 person. She delegated my call to who was more interested in the customer service issue than the vulgar, insulting, and dishonorable actions toward someone with a terminal disease. THE ONLY WAY TO FIGHT BACK AGAINST A CORPORATION FOR WHOM PROFIT IS MORE IMPORTANT THAN PEOPLE (customers) IS VERY SIMPLE: STOP BUYING THEIR PRODUCTS.

Imagine if all Alzheimer's victims, their families and caregivers, and commercial facilities began replacing all their SONY equipment with other brands of consumer electronics? Maybe it's a blip today on their sales charts, but as the number of Alzheimer's victims continues to grow, their sales will begin to decline--and continue to decline until they recognize that our market segment is one with which to reckon. And it's not just SONY. There's a local restaurant that openly refuses to make a reasonable accommodation for disabled people; Alzheimer's as well as other people with ambulation (getting around) problems. I wrote the owner, waited six months for a reply, and never step into that eatery EVER again. Oh, remember too that word-of-mouth also works--in many cases, it works as well as a boycott.

There's a vulgar old saying: Once you have them by their "xxxxx" their heads and hearts will follow. When it comes to an organizations, a dent in their cash flow will get their attention. I am PLEASE asking you to consider your purchases, especially consumer electronics, in the future. In this financial depression, it's a great way to get attention for our cause and if they want our business, then we want our dignity as well as their donations.

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Dr, thanks for joining our online community!

I wonder, could you please take a few minutes to introduce yourself properly? More about family, friends, work, disability? We're all waiting to get to know you better.

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Yes Professor,
Hello and welcome. Please elaborate. We would love to know you better!

Again, welcome.

Oh My Goodness,

Professor ~ Why don't you tell us how you really feel! LOL! You are so right on though. Good for you to have the guts to follow through with action. Even if it may not have had the result you would have liked to have seen. You had your say. Who is to say it won't help the next guy. Thanks for stepping up to the plate for me.

Lynn

Thanks Alan, Lisa, and Lynn: Given my prior experience with this communication format, I'm really surprised by hearing back from community members!

I was diagnosed by accident as part of a degenerative disk disease myelogram--I have a really nice and SMART neurologist (since he diagnosed it off the x-rays at the orientation appointment). The Dx was confirmed by two other neurologists and three neuro-psych examinations (one for FICA Disability benefits).

I wasn't surprised since my Mom died from ALZ at 85, my grandmother at 79, and my great-grandmother (post-80). I knew it was coming (published research), just not early-onset. My family needed more money put away to cover the costs, but I was forced to retire at 54 years old--that's 12 years too early.

Where's TARP (toxic asset recovery program, not treating ALZ responsibly and passionately)? Did any scientist test the government for ALZ since their actions are very abnormal! It's OK to give away hundred-thousand dollar housing to the homeless; but it's not OK to cure ALZ.

My true point might have got lost in the posting: MONEY TALKS. But all our money is going for drugs, neuologists, etc. It's a shame that victims, caregivers, and families cannot form Political Action Groups and throw out all 537 federal politicians.

I mean, look at what those with AIDS have done for funding, publicity, electioneering, etc. Same goes for CHOICE. Where the hell is ALZ? Memory Walks? Boy, that's a whole 22-seconds on the news once a year. Compare the rate of publicity with the rate of increase in new victims and in 50 years, half the population will not know that they have ALZ.

This is the same way the medial community treated women and heart disease. Women have been around for a couple of million years yet we are just learning that the symptoms of a heart attack differ between men and woman. WOW, wait until physicians get another foot or so lower and find a difference. Physicians use Latin and multi-syllabic words to hide the truth: THEY ARE CLUELESS.

All of us need to express our frustration through others. We should be tired of his deedless words. Put a trillion dollars into ALZ research/treatment and you get a cure a lot faster than at the rate we're currently going. Remember, the Boston Tea Party helped get us a country. Let's find a way to get us a cure. NOW, not when our impotent representatives, senators, and President "promise" they will. And we have to do it ourselves since Nancy Reagan and her twinkle-toes son are SO MISINFORMED about the situation, they do more harm than good!

The Alzheimer's Association should use the ACORN model. Cheat, steal, and commit any heinous act to achieve your purpose. It works for them since they now have amended the US Constitution without any State Legislature voting on an amendment.

Maybe I need to be more open and clear about my feelings? What do you think?

Peace, people!

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I understand your frustrations and anger! We've ALL felt what you feel.
Thank you for sharing. Are you an MD? What is your specialty? And the Professor, are you a teacher? How interesting!
I agree with you about getting more money. Are you planning to come to Washington, D.C. March 23rd thru March 25th for the "March on Washington?" It is the Early Stage Summit and Public Policy Forum.
We could really use your enthusiasm and your voice!!

Peace and Hope,
Lisa

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Proffessor,

I would like to join the group and Welcome to our On-line community. Your voice in DC would be helpful to yourself and the rest of us with Alzheimer's! I live just down the road from you I guess but we have a set of birthdays on that weekend/week. My son and his daughter who live in Syracuse were both born on 3/23. Also my deceased mother and one of her brothers!

Thanks to all who have written to me! It’s nice to hear from strangers who care, which is not an oxymoron. Really, I don’t get birthday cards from my wife’s siblings or their spouses or their offspring. I know that they have their own lives but their uncle is dying. Hey Hallmark, this sounds like a new line of greeting cards! Call it the "Glad You're Still Alive" live a greeting cards!

Lisa, I forgive you: I’m a REAL doctor, not an md. In fact, before I was forced out by early medical disability retirement, I loved university teaching and research. That scares those quasi-barbers who think they are God (inside factoid about mds). An aside for every EOAD victim: STAY AWAY from control groups – they are death sentences. The only person who benefits from a sugar pill is a dentist! for why you will die/become sicker in a control group as well as a better way to do experimental design than Campbell, Cook, or Stanley promoted (alleged pioneers in research design)].

Also, I was a real SOB in the classroom. My students understood and cared. I taught 3000-plus students.

I’m really sorry but I don’t travel well anymore due to the drugs, cervical implant, and diseases. BUT I HAVE AN IDEA: an excellent anchor woman on ABC affiliate. You tell me what to say (or sent it to me in an email message and I’ll make it looks like I know what I’m talking about). I’ll call her and do my best to persuade her to cover the story. If I had known, I might have convinced her to go down to DC for the story (hey, a road trip is a road trip – remember college?). In the future, we may have a great advocate for EOAD - I think she might be interested given my prior conversations.

OK, how about one person who is either reading/writing on this site? Hundreds of EOAD victims could be on their local TV stations (assuming that they’ve told people – DON’T WANT EMPLOYERS FINDING OUT AND THEN USING A LOOPHOLE TO FIRE A DISABLED PERSON – like that never happens!) talking about the event.

Come on, people. Here’s our 15 minutes of fame and alz.org can give us the talking points. This event is too close for now. But let’s start planning for the next one. I’ll volunteer first, right now, to help out in any way possible to organize an EOAD victim TV Action Group. And be sure to use us (readers AND writers) for TV with local, state, and federal officials, too. I’d love to pin my two Senators to the wall about their lack of support for Alzheimer’s research. You know, those sleazy politicians used the internet that way, so why don’t we use TV that way.

Why don’t we make the sixth (6th) of EVERY month EOAD-TV day. That’s only twelve sets of talking points as well as developing a “reference person” in every local TV market for all the stations. This could work if you consider the crap on TV every day. What’s more important: Dr. Fill-to-the-Brim-with-Crap or Alzheimer’s Facts?

Duh! Get Alzheimer’s on enough people’s minds and that means money, sympathetic politicians, more med students going into this specialty, etc. If you’re religious, then why not ask your religious leader to take the congregation to a nursing home to see what it’s really like. Here in PA, I’d rather live in a septic tank given the complete lack supervision and penalties!

Everything depends on alz.org and on whether they think they know everything or if they are willing to learn. It’s called Civil Disobedience and we need to make politicians, drug companies, and other fat cats afraid. They need to be afraid of law suits, rigged drug tests (remember Oraflex?), and most of all: Re-election.

Peace, and more importantly: FIGHT THE FIGHT NOW or we die. It’s just that simple.

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The Professor has the right idea but the wrong method.

I suggest we go after the big corporations for ADA violations. We struggle with a vital life skill, communication. This qualifies us for ADA standards. ADA needs some better teeth but they will not happen until we scream.

ADAAccessnow.org goes after wheelchair access issues etc. We need to team up with them and network to fight communication access problems.

My first concern is the blasted call directors. I cannot process the options to push the right button to get to the next level to have to do it all over again. Rarely is there a bypass available. Even doing nothing as if you have a dial phone rarely helps.

If Obama wants to create more government jobs, we can direct him to ADA issues regarding communication. The FCC (Federal Communication Commission) needs to have an ADA compliance department that can respond to our complaints.

This is do-able. We just need to complain in unison. Sony does not care. They have changed their business model and dropped the idea of "It's a Sony." They are resting on their laurels as are most companies.

check out www.ADAACCESSNOW.ORG

Mark,

The sign of a "real professor" is never stop learning. Thanks man for showing me I was myopic, looking at the little stuff.

Everyone, assuming you're not asleep after reading my prior posting, Mark is RIGHT!!! He's got the right idea by going after the big guys for ADA violations. SONY "offered" me a couple of DVDs and CDs for "my trouble" - amazing what they think integrity is worth today! Japanaese honor must be a myth.

What do you think is the next step Mark? You don't sound like a "walk around the trees type guy" to me. How do we get on with ADA Access Now? Are they in every city, web based, etc? Do you think they would be into a "merger" of ideas and approaches?

I don't know them so I think we should count on Mark for getting us started. And Mark should NOT be worried that it's all being dumped on him. Many of us are ready to expose the anti-disability companies; we just need help in doing it.

OK Mark, I'm with you. What about Alan (in CO) and Ttom (PA) or Lisa 428 (our Cajun pal!). I admit it, it is easy to type on these boards, but Mark, my sleeves are rolled up and ready to rock. I'm with you, buddy.

I think you're right-on about doing this in unison. One voice gets lost in the process. A couple of thousand voices and we get heard.

Hi to All,
I'd love to help but right now I have to get on a plane to Washington, D.C. to March on Washington, Attend the Early Stage Forum, and meet a lot of Senators and Congressman/women! I'm ready to FIGHT the GOOD FIGHT!!
Wish me luck. I hope I serve everyone and this organization well! I'll do my best!!

Hey Professor,
What does <*> mean??

Lisa,

Go Girl, we need all the help we can get.

Sharon

Maybe the <*> is the prof's new pseudonym online identity.

He ranted about not using our real identities. This is about as minimal as one could get. Maybe the board requires three characters.

Maybe I should change my online identity to ' . That is as simple a "mark" as can be made with a qwerty ASCII keyboard. Problem is I would forget whose mark it is. I might have to put it between some kind of brackets. maybe ['] since I have always been know to be a square. It could be interpreted to mean "square mark."

The prof's could be interpreted to mean less than star, more than star (asterisk) but that sounds like a mutually exclusive description.

But than, my mind is broken so what do I know?

There's the <*>, and the information at the bottom of his posts is gone, too. I fear our new friend has deleted himself out of our system. Someone had a bad reaction to one of his posts, basically admitting to being scared by the professor. He apologized, and I think that was it from him.

Professor, if you're still lurking, please come back! You'd made a comment about not being used to this kind of board, and its level of interaction. Maybe dialing it back a notch would be indicated, for benefit of those who get scared by your aggressive writing style.

Professor, I've had problems with many expressions of my aggression, starting decades before my involvement here. It's trial and error, and luckily for you, there are guys like me that can help if you'd like.

So, please, c'mon back, and let's all grow from this.

Professor---I'm just a caregiver...but...I second the motion for a command performance. You have a spark about you that these forums could use a little bit more of. Personally...I think a little more of the vocal "in your face" type of advocacy that you are attempting to get started would be a welcome relief from the "please throw us a bone" attitude that I've heard over the last 3 years. The very least that it would accomplish is to help me to feel that although I may eventually lose Charlie to A/D...our efforts might make the journey easier for others.

Hey...Your e-mail address does not seem to be working.