Advocacy Work or Advocacy Work?

I want to help people like me. People who are doggy paddling their way through this horrible mess. I suppose I feel like my dad and I have had to figure things out the really, really hard way……. so why not pass along the lessons we’ve learned.

TIP#4,592,569: When you’re with your parent, live in their world, talk to them in their language and carry wet wipes. Always carry wet wipes. 

That’s sort of the point of this blog. Share my story. Pass along the info I’ve learned……………….. make life just a little bit easier for someone else. Stuff like that.

A few months ago, I joined a group called YAAA! Young Advocates for the Alzheimer’s Association. The group was formed to advocate change at the federal level……………………… this means contacting your local representative, talking to them about the disease, sharing your story, etc…………………….. I’ve written to my representative a few times………….. to very little avail. I initially received a kind response from his press person—a good sign. I emailed her maybe 2 or 3 times since that first email and in her last response, she told me to send my messages to their general email address………………. from there, it will be distributed to the appropriate person (hopefully, their healthcare liaison………… still, I wonder if the intern will see my name and just hit “delete”).

Maybe Justice for the demented is demented herself. And blind. Or something.

So, I’m frustrated. OK, and a little angry. I pay taxes. I am a law abiding citizen. I have never been a burden to the system. So when I actually need this person to pay attention to me, I’m redirected to a “Write Your Rep!” link. Really? Seriously?

Dude, why don’t you meet my mother? Why don’t you see how draining this disease is on one of your constituents? Why don’t you walk in our shoes for an hour and try to understand why we need funding for this disease and other types of dementias.

I stopped writing to this person. I keep thinking I need to just keep drafting emails and shooting them out, but then I just become angry. I am considering leaving YAAA! I don’t think I have the patience to affect change like this. My patience goes directly to my mother; not to some overpaid congressman/woman whose job, let’s face it, is to get re-elected.

Maybe my purposes is to actually talk to people who are living this nightmare, instead of sending emails to blackhole@house.gov.

I know on some level I’m being bratty and impatient about this. It takes years to make change happen……………… Still, when I think about what our elected officials bicker about, who they pander to, and the issues that actually get people out to vote (Gay marriage? Seriously? That gets you out to vote? Why do you care if two tax payers want to get hitched? And who are you to play judge……….. why not worry about something that may actually impact you directly, like your health, and the fact that you may actually develop something like Alzheimer’s!), I lose faith in the system. I lose faith in government. I lose faith in our people………………………………. No wonder we are the laughing stock in so many countries, our priorities are truly jacked. We don’t care about OUR people. The people are last. And the people don’t care that they are last!

I’m tired of fighting. I fight for my mother on a pretty regular basis. I fight for information. I fight for her right to be heard, for her to be treated with some respect. I educate people about her—usually because she just yelled DESPIERTA AMERICA and I sort of have to explain why she just yelled bloody murder, but still……………………. so when I have to fight for a congressman to do his job and meet his people, I just want to quit. I just don’t know if I have the energy to write and write and write emails for a cause that will take years to manifest……………………… and in truth, I wonder, will more money make a difference in our loved one’s everyday life? I’m talking quality of life here……………….. Will there be more programs dedicated to people with Alzheimer’s or Frontotemporal dementia…………… Will there be training for healthcare professionals so they understand how to deal with someone like my mom versus someone like your mom? Will there be more programs designed to support the caregivers?

I don’t know what I’m going to do. I don’t know what I can do.

>>Flickr pic by Mjecker

The Flip Side of Detecting Alzheimer’s Disease

Interesting read about the latest news to emerge regarding the possible detection of Alzheimer’s…….. At first I was stoked, now I’m concerned about misdiagnosis and the pain one has to endure just to learn if they have one of the most horrific diseases possible—and with no cure at their disposal or medications that actually do anything to slow the progression (sorry, my opinion, but meds like Aricept and Namenda caused my mom to be very, very sick and obviously did nothing to slow the inevitable). Bottom line—if you’re dealing with someone who is already exhibiting “symptoms” of the disease, getting them to submit to a painful spinal tap is not going to be easy…… I remember taking my mom for an MRI, a non-invasive procedure, and she couldn’t stop crying…………. frankly, I have no desire to put the woman through anymore pain just to learn that she has an incurable disease……………………………….. yeah, thanks doctors, but DUH!

Of course, you decide….. article below:

Alzheimer’s Isn’t Up to the Tests

By SANJAY W. PIMPLIKAR for The New York Times

A PANEL of medical experts from the National Institute on Aging and the Alzheimer’s Association last week proposed changes in the way doctors diagnose Alzheimer’s disease — including the use of so-called biomarkers, tests like PET brain scans and analyses of spinal fluids to promote early detection of the disease. Although these recommendations are well intentioned, evidence suggests that it would be a mistake to adopt them at this time. To understand why, it’s important to recognize what these tests mean, in what context the information will be used and what experience has shown us.

First, about the diagnostic tests: A PET scan detects clumps of a deformed protein called amyloid beta, commonly known as plaques. The presence of these plaques has been a gold standard of Alzheimer’s pathology since 1906, when Dr. Alois Alzheimer first identified them in a patient.

However, we now know that roughly one-third of all elderly adults have such plaques in their brains yet function normally. And eleven clinical trials, recently made public by a group of drug companies, that were aimed at reducing these plaques in Alzheimer’s patients all failed to show cognitive improvement, even when the brains were cleared of plaques.

Thus, the presence of plaques cannot predict with any accuracy or specificity that an individual is going to acquire the disease — and researchers are increasingly looking beyond the amyloid hypothesis for an adequate explanation for Alzheimer’s.

Another test being recommended by the panel is spinal fluid analysis — which measures the relative levels of two proteins, tau and amyloid beta. This method does seem quite promising, but its predictive potential remains uncertain.

There are also practical issues to be considered, not least of all the high cost of these procedures. What’s more, the spinal tap procedure is not easy to perform and is painful to undergo, and it is a long way from becoming a routine diagnostic tool. Dr. Janis Petzel, a geriatric psychiatrist in Maine, has noted how unfeasible this test is in “nonacademic, rural or non-Western settings”: “I pray that cerebrospinal fluid findings will never be part of diagnostic criteria for Alzheimer’s disease,” she wrote.

The diagnostic tests themselves can carry a risk of side effects. General imaging scans can expose patients to radiation, for instance; an invasive spinal tap could result in infection or damage to tissue. But there is also the psychological risk of false positives and misdiagnoses that greatly distress patients, at least until further tests show they do not have the disease.

This danger of overdiagnosis is very real, as the history of treatment for prostate cancer shows. A study last year about the prostate-specific antigen test found that in the two decades after the test was introduced, prostate cancer was detected in more than 1 million additional men, many of whom were likely overtreated.

Last, the most dreadful thing about Alzheimer’s disease, next to the slow deterioration of cognition, is that we do not yet have a cure and none seems to be on the horizon. So, even if the new recommendations rendered the diagnosis earlier and unassailable, there is no therapeutic avenue to use this information to effectively treat the patient. Many individuals would simply prefer to be spared the emotional trauma of a diagnosis if no treatment exists.

Taken together, these reasons suggest that the panel’s recommendations are likely to increase the emotional burden on individuals and the financial burden on society without providing proportional benefits. The doctor’s most basic tenet is that of primum non nocere — first, do no harm. Until we have a more definite idea about what causes Alzheimer’s, early-detection tests may do patients more harm than good.

Sanjay W. Pimplikar is an associate professor in the department of neurosciences at the Cleveland Clinic’s Lerner Research Institute.

>>Flickr pic by Yohan

The Feds VS. Alzheimer’s Disease

Ten other nations have Alzheimer plans. More than half of our states are working on plans. But the federal government has no plan at all.

Taken from an article that appeared in the Huffington Post

By Harry Johns, President and CEO of the Alzheimer’s Association

A new report released this week by the Alzheimer’s Association called “Changing the Trajectory of Alzheimer’s Disease: A National Imperative,” shows just how much this disease also threatens the financial security of Medicare and Medicaid………………..

This year caring for people with Alzheimer’s disease will cost Medicare and Medicaid $122 billion. By mid-century it will cost, in today’s dollars, over $800 billion. When you factor in the costs to others—the out-of-pocket costs to patients and families, the costs to private insurance and HMOs, and the costs of uncompensated care to health care providers–cumulatively over the next 40 years and without taking into account inflation, caring for people with Alzheimer’s disease will cost the American people $20 trillion. That’s enough to pay off the entire U.S. federal debt today and then send a check for $20,000 to every man, woman and child in America with money left over……………………

This is where we are today. Not only has the federal government done little about the existing and unfolding Alzheimer crisis, it has no idea what is going to be done about it. The federal government has no comprehensive plan for how to avoid this disastrous future. It has no plan for adequate strategic research to develop the treatments necessary to save lives and to save the trillions that will be spent through Medicare and Medicaid. It has no plan on how to care for 13.5 million – and as many as 16 million – Americans with the disease by mid-century. It has no plan to have the needed nursing home beds or to expand home- and community-based services.

Read more. Learn more. See how you can help.