GUEST BLOG BY MARILYN BLUM - MON/TUE., APRIL 30/MAY 1, 2012

Regular readers of Joan’s message boards on this website may know me as MarilyninMD; I have been a member here since 2008. My full name is Marilyn Blum and for the last 7 years, I have been thrust into the murky waters of AD caregiving because of my husband Steve’s diagnosis of “MCI”, “probable AD” in 2005, at the age of 60.

As Joan explained in her last blog, each year the Alzheimer’s Association holds a 3-day Advocacy Forum in Washington, D.C. that is attended by representatives of each State’s chapter. Everyone who attends either works for the Association, or has a personal connection – usually an immediate family member, who currently has or has died from AD. The main purpose of the Forum is to visit members of Congress and to tell our stories, with the hope of obtaining funding for AD research and services for patients and families.

Prior to attending this Forum, I did advocacy work early in Steve’s diagnosis. In 2007, I was asked to testify at a Senate Subcommittee Hearing in Washington, DC, to help push a bill through for funding for AD research. It was a surreal, exhausting and nerve-wracking experience, but I survived it. The bill did not – it did not pass. Two years later, I went with other caregivers and representatives from the Alzheimer’s Association to Washington, DC to visit members of Congress to try to convince them to allocate funding for AD research. Since I had moved Steve to an Assisted Living Facility in 2011, this year I was able to attend the entire 3-day Forum.

You many wonder – why would she want to do that? It is expensive, exhausting, and let’s face it, nothing much in Washington gets done beyond a snail’s pace. Well, I’ll tell you why – some of you may have read a thread I started recently about building caregiver resilience. One of the tips was to practice re-framing – in other words, making lemonade out of lemons. Not to sound like a Pollyana, but this is what being an AD advocate does for me. One of the most difficult aspects of Steve’s illness, for me, was the loss of control over our lives. Hearing that horrible diagnosis and knowing that there is not a thing I could do to change the outcome. That he was going to die and possibly face a long, slow death process; and that my life would also be dominated, for an indeterminate number of years, with sadness and an incredibly challenging situation that I’d have to handle, virtually on my own and without a shred of hope that the disease’s trajectory could be altered. Advocacy makes me feel that in a small way, I am not accepting this awful status quo and that I’m fighting back. I know that, realistically, my efforts won’t help Steve in his lifetime, but they may help others not yet diagnosed.

I am writing this blog not only to tell you about the Forum, but also, to perhaps interest some of you in becoming advocates in the future. As Joan has suggested, sending your stories in writing to your congressional representatives is a wonderful idea. But I’d also like to plant a seed that perhaps in the “after”, the period when your hands-on caregiving is over, some of you will want to take on an advocacy role and hopefully, ease the burden of those who will be unfortunate enough to wrestle with dementia in the future, as well as their caregivers.

Some of the activities included in this year’s Forum were: training on how to communicate with members of Congress, and what some of the current proposals are. I learned that although the National Alzheimer’s Project Act (NAPA) was passed in 2011, and contains a provision for AD research funding, the funds now have to be actually allocated before anything can happen. The Health Outcomes, Planning and Education (HOPE) for Alzheimer’s Act has been proposed, and would provide sorely needed services for people with dementia and their caregivers. But in this case the ACT itself must be passed and then, funding appropriated.

Of course I was interested in the medical update. To summarize,  in the next 8 months, there will be results available from multiple Phase III clinical trials for new AD medications. Two, the Bapineuzumab and Solanezumab trials, should finally answer the question of whether removal of the amyloid plaques from the brain are positive or negative – a major concern. One interesting point that was presented was regarding the rate of scientific progress in AD research. I don’t know about you, but I’ve been frustrated  by the seeming lack of recent progress. The doctor who did the presentation used the development of statins to prevent heart disease as an example. The relationship between lipids and heart disease was discovered in 1907; yet the first statin drug wasn’t marketed until 1987. Modern AD science started in the 1970’s, so you can see, there is a long way to go before good medications will be in place. He indicated that AD treatment would resemble another complicated disease – high blood pressure. Different medications help different patients. The other point he mentioned was that the new PET scan imaging just approved for use by the FDA will be available July 1. This is a major advance in diagnostics that I think we can all appreciate, as most of our spouses were diagnosed using the “educated guess” or “rule everything else out” method.

One of the highlights was a wonderful dinner, which was hosted by TV personality Meredith Viera (whose brother had an EOAD diagnosis); Maria Shriver presented an award to Pat Summit, the Tennessee women’s basketball coach who recently went public with her EOAD diagnosis; appearances by former Congressman Dennis Moore (Kansas), who recently was himself given and EOAD diagnosis, and the actress Jane Seymour.

Of course, the most meaningful part was the visits to our Congressional representatives. Joan is absolutely right about them taking notice when a “young” diagnosis is mentioned. When I mentioned  Steve’s diagnosis at age 60, there was a distinct reaction from each listener. And one Congressman’s facial expression changed when I answered his question on how old Steve was when diagnosed, and when one of our group told him that his former colleague, Rep. Moore, had recently received a diagnosis. Perhaps this is because the Congressman himself is about 62 – this hit very close to home for him.

Realistically, in these economic times, it’s hard to get money allocated from Congress, no matter how worthy the cause. But in the few years I’ve been advocating, I think I’m seeing a subtle change. As more and more well-known people go public, like Pat Summit and Glen Campbell (who is doing a special concert for members of Congress), and since one of their own, Rep. Moore, has now been stricken, it has to make a difference.

Once our loved ones are beyond the early stage of AD, they cannot take up the cause – we must literally be their voices. Please consider doing what you can to advocate, now or perhaps later on. Believe me, I know that while you are taking care of your loved one at home, even carving out the time and energy to write a letter is a significant issue. I clearly remember six years of putting the non-essentials, including mostly everything for myself, on the back burner. But think about doing it for our children and grandchildren’s sakes, so that someday, they simply will not have to endure the level of anguish that we and our families have, seeing an incurable disease steal away the person we love most in the world, bit by bit, knowing we have to stand by helpless to stop it.

©Copyright 2012 Marilyn Blum

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