Monday, May 19, 2014

No Anger for Alzheimer’s, No Marches, No “Act Up” Groups

Live long enough, they tell us, and you will get Alzheimer’s disease, an affliction so brutal in its theft of our personhood that you want to cry. But crying does little good and ageism in this country bristles against marching for old people who have lived beyond their usefulness. How do we measure the value of a human life? We have people blowing up abortion clinics, marching against next-day pregnancy pills and yet we allow the elderly to die and do almost nothing. Oh, excuse me, I think we do absolutely nothing but an occasional article and a press release about a “promising” key to stopping Alzheimer’s. Hogwash. The current medications are less than useless. Anyone who's being honest with you will say so.

Who do you love? Do you love your parents, your aunts and uncles, your cousins, your kids, your spouses? Do you love them enough to want them to have a good life and an easy passing. Seems the only easy passings are those provided to those who agree to that extra bit of morphine that will bring soothing Morpheus to end the misery, but not for Alzheimer’s.

Do you really understand what Alzheimer’s does and how it affects people? I’ve seen more of these patients than probably anyone who isn’t involved in clinical trials of new meds. The reason I’ve seen them is that I was once on those front lines of clinical trials and the sadness, the hopelessness, the sheer heart-wrenching displays of incapacity were incredible.

If Alzheimer’s is anything, it is another of those equal opportunity disorders that can strike anyone. If it strikes a President, a former famous film actress, a retired general, a Harvard surgeon or a schoolteacher in the Mid-West, it’s all the same. Slowly, relentlessly, it sucks away first simple memory abilities like balancing the checkbook and then it works its way upward. So, the order of this disability in terms of mental and physical abilities is a reverse not just to childhood, but even before. Alzheimer’s even robs people of the ability to eat and swallow food.

People who were accomplished and pleasant become childlike and even, in some cases, dangerously paranoid and try to defend themselves from dangers that aren’t there. This country spends, I would suspect, billions without even realizing that it’s going to the care rather than the cure of SDAT (Senile Dementia of the Alzheimer’s Type). Cure did I say? Oh, right, there’s no cure for old age, but the elderly don’t HAVE to be demented and we should stop seeing every slip of memory as an indication of Alois' disorder. I’m so over those people saying it’s a “senior moment” or “old timer’s disease.”

A recent article in The New York Times called Alzheimer’s an epidemic and I think that's appropriate. The author likened it to the fight for a treatment and cure for AIDS.  But he also noted that in one year more people will die of Alzheimer’s than the number that died of AIDS in three decades. That is a very, very disturbing statement. This one, however, seems to be a hidden epidemic that we talk a lot about but launch no impressive countermeasures against.

We fight and march for cures for breast cancer, many diseases that affect children, we mount intense campaigns and laws against cigarette smoking and lung cancer, but for Alzheimer’s what? What? I don’t recall major marches and I certainly haven’t seen anything from the Gray Panthers in decades. Remember them?

Sure, occasionally there’s a big, wildly promoted society dinner with splashy photo montages and an award given to someone of note with star power or incredible wealth. The next day after the gowns have been put away and the tables cleared the night before, what’s left? Only the place cards of those who came?

And those cards are of what use? Do you know an Alzheimer’s patient might actually try to eat that card? Yes, eat it because they can’t tell the difference between food and non-food. I’ve seen a woman look at her dinner plate and the utensils and she didn’t know what any of it was for. Another woman, once she took off her reading glasses, couldn’t figure out how to put them back on. Yet another woman screamed that a stranger was trying to get into her bed at night. It was, of course, her incredibly distraught husband. One woman who was literally two steps outside her NYC apartment door in the hallway couldn't find her way back home. Imagine her panic. This is ageing gracefully or miserably?

What will it take to wake America up to the tidal wave of Alzheimer’s that is barreling down on our healthcare system? Certainly the inhumanity of it all doesn’t seem to be working. Will the crushing reality of all those dollars being spent to warehouse people prove too much and, if that, how will we handle it in a humane way? You think about that one long and hard, my friends.

Right now the Japanese are rushing to find anything that will quickly ameliorate the effects of stroke because they have the highest incidence of stroke in the world. They’ve just passed a law to loosen the restrictions on new medications for stroke. If it’s safe, they are willing to let researchers try it on stroke patients.

On top of stroke the Japanese have a rapidly aging population in a culture that no longer sees family responsibility to care for their elderly as a mandate. They are desperate for something to stay the advances of not just stroke but Alzheimer’s as well.

The Japanese, it would seem, have found one ray of hope and it’s in regenerative medicine. Sure, two elected officials here recently introduced a bill to fund a special department or committee or whatever to work on regenerative medicine. But how long will this actually take to become a working reality that will attack the problem head-on? I’m not too sanguine on that front.

What appears most incredible to me is that, with all the scientific brilliance in this country and abroad, why don’t we have an international group working together on Alzheimer’s? Japan, as I understand it, allows drug companies to work together on difficult problems, but do we? And just why won’t that happen here?

While I’m at it, why hasn’t the AARP done more? They seem too invested in selling insurance and lobbying for Medicare payments, but where’s their research-activation arm?

Many questions and few answers at this point.