Archive for November, 2014|Monthly archive page

No survivors

Sometime next year, scientists will launch two large studies testing the preventive effects of experimental anti-amyloid drugs on two populations: an extended family with a rare genetic mutation linked to early onset Alzheimer’s, and older people at higher genetic risk of developing the more common late-onset form of the disease. It’s a huge undertaking. The drug trials and overall prevention initiative are described in more detail here.

I heard about these upcoming trials during a webinar late last month hosted by the Banner Alzheimer’s Institute in Arizona, the lead organization behind the studies. It’s one thing to design drugs that act on troublesome plaques in the brain and show their promise in animal studies and cell cultures. It’s another thing altogether to convince people – especially healthy people – to participate in research that can determine how those drugs work in humans.

Hence, the webinar for bloggers, to help raise awareness about the need for research volunteers in Alzheimer’s prevention trials. To this date, we don’t know what causes Alzheimer’s or how to prevent it. We know plaques and tangles are found in the brains of Alzheimer’s patients, but are they instigators or consequences of the disease? And there are lots of hints suggesting that what’s good for the heart and bones is also good for the brain, but no proven drugs or behaviors have been identified to definitively fend off the disease.

To help address this human subject recruitment problem, the institute has created the Alzheimer’s Prevention Registry, which matches researchers with volunteers willing to participate in clinical studies. I signed up for the registry last year and encourage others who are interested in research, or Alzheimer’s, or the greater good, to do the same. It’s easy and available here. Adding your name to the registry does not obligate you to do anything else: It just means that under specific circumstances and after you give permission, you are willing to have your contact information shared with a researcher who can then begin the process of determining whether you are eligible and available to participate in a given study.

The webinar was hosted by Jessica Langbaum, the principal scientist at Banner. In addition to outlining the statistics associated with Alzheimer’s (5 million+ Americans affected, sixth leading cause of death, 1 in 10 adults care for someone with the disease), she said two things during the webinar that really struck me.

She noted that high participation in the registry could send an important signal to federal funders that more money is needed for Alzheimer’s research. So far, 44,000 people have signed on. The registry’s creators would love to see that number grow to 100,000. “There are no survivors to talk about the importance of research,” she said. “We have to do it for them.” I’ve known all along that Mom’s illness is a fatal, terminal condition. But I had never thought in terms of advocacy, that no one can say: “I survived Alzheimer’s thanks to research.”

Along those same lines, Dr. Langbaum made reference to a highly visible survivorship campaign that long ago captured the public’s attention: the pinking of America that takes place during October, Breast Cancer Awareness Month. Well, November is Alzheimer’s Awareness Month and National Family Caregivers Month. Purple is the color representing the Alzheimer’s visibility campaign. And Dr. Langbaum, reflecting my sentiments exactly, said, “I hope someday the NFL isn’t just wearing pink in October. Maybe players will wear purple during November.”

Wouldn’t that be something.

[In the interest of full disclosure: I will receive compensation from Banner Alzheimer’s Institute for participating in the webinar and writing about the registry.]

Sixth Thanksgiving

I used that headline because it’s hard to say. You have to pause between the words. Kind of like it’s hard to have another Thanksgiving meal at Mom’s nursing home. I don’t mean to be ungrateful about the time I am able to spend with Mom. It’s just very interesting, and also dreadful, to arrive at another annual event and think, wow, she has been at this nursing home for a long time. And she has had Alzheimer’s a lot longer than that.

Tonight she seemed subdued, perhaps a little distressed. Her brows were knitted throughout the visit. She talked quite a bit, and responded with a nod of the head a few times – particularly when Patrick gently rubbed her cheek and asked if she liked it. And then, out of the blue, she said, “I don’t know where I am.” Her only coherent phrase.

We took turns feeding her. Reassuring her. Trying to make her laugh or smile. I got a sense at one point that she was feeling a little ornery in response to Patrick, who mercilessly teased her – just like he always used to. It’s very possible that I imagined that, though.

Next to us at the table, I met a resident who has lived at the Alz center for two years. I had never laid eyes on him. I talked to his wife a little bit, and she said he spends most of his time in his room. And I overheard a few things she said to him: “We went to St. Croix and stayed at your friend’s place.” “You golfed in Scotland.” “We could have used a few more good years together since we got a late start.” Very matter-of-fact. And he was engaged in the conversation. It was both comforting and quite sad to hear.

First attempt at a selfie. I wanted a shot of all 3 of us.

First attempt at a selfie. I wanted a shot of all 3 of us.

Success, sort of. It was tough to convince Mom to fully open her eyes.

Success, sort of. It was tough to convince Mom to fully open her eyes.

If you put your face close enough, Mom might offer a kiss.

If you put your face close enough, Mom might offer a kiss.

Patrick and I took turns feeding Mom. She dutifully opened up every time the spoon neared her mouth. And then, abruptly, she pushed her plate away. She rubbed her eyes and scratched her ear. I’m amazed that she still knows how to address those physical sensations, that she can scratch an itch and even pick her nose. Maybe it’s regression and disinhibition, but considering that her brain has lost almost all language, there is some powerful information still in there that lets her find a way to fix what’s bothering her. Similarly, when Patrick and I started taking pictures and getting into her space, she crossed her arms and hunched forward, as if to protect herself from what could have felt like a physical threat. And yet, we were hugging and kissing her.

I explained to an old support group friend that I don’t visit Mom as often as I used to, and that sometimes when I do visit, I’m an annoyance to Mom. Or at least there was a period when that was the case. She doesn’t visit her husband as much as she used to, either. “He doesn’t miss me,” she said, as we both nodded, knowing we are on the same page in many respects about this disease. “They don’t miss us.”

Unhappy anniversary

I was already planning to write a post today because it is the 9th anniversary of Mom’s Alzheimer’s diagnosis. Nov. 3, 2005. I remember much of it well; other details, not so much. Mom, my sister Laura and I visited my coworkers after the appointment because my office was right across the hall from the neurology clinic at the time. What a surreal scene, Laura and I numbed by the diagnosis even though it wasn’t necessarily a surprise. And Mom probably just going with the flow. She hadn’t had a strong reaction to being told she had symptoms of dementia and that her condition closely resembled the Alzheimer’s type of dementia. None of us cried or anything. Just a lot of nodding our heads.

And then NPR announced the death of Tom Magliozzi of Car Talk, from complications related to Alzheimer’s. That really makes me wonder what happened. He and his brother retired just two years ago. It strikes me as so unexpected for someone who is only 77 years old (Mom’s age, too) to die of Alzheimer’s so soon after ending a highly visible professional life. Could it have been pneumonia? He could have fallen and had a brain injury. Maybe had difficulty swallowing and choked? I really want to know even though it certainly is none of my business. And as I said on my Facebook page: “If one is going to have Alzheimer’s, I believe that less is more. He is free.” It’s terribly sad to know such a robust radio character experienced this terrible disease. And yet, he and his family have been spared the prolonged agony of a very slow decline. Considering his death is a shock and a difficult loss for so many listeners, the news spread quickly over social media. And of course I personalized it: His brief Alzheimer’s experience made the reality of Mom’s illness that much starker as I ‘observe’ the anniversary of her diagnosis.

Mom is still imprisoned, still a blank slate, but thankfully still apparently at peace. I had hoped to visit her over the weekend – I took a vacation day Friday with thoughts that I would visit but didn’t even get out of my pajamas for a shower until 4:30 p.m. Then yesterday I was determined to go, but I felt a little sick. Today, with the anniversary at the top of my mind, I felt such urgency to see her that I went to the Alz center before work, arriving around 8:15. On my way there, I had my usual thoughts: Could she be dramatically different since I saw her last? Is she still content? Will she respond well to my presence?

I found her sitting in a chair near her room. She was sort of out of it – tired, I assumed. Still waking up. I recalled the aide who said during my last visit that Mom doesn’t like to be rushed in the morning. I rubbed her arm and head and just sat with her. An aide came to get her for breakfast, and she and I heaved Mom out of the chair and led her to a table. She seemed a little miffed but kept shuffling along as we held onto her arms. We sat together waiting for her tray. An aide asked if I would be around to feed her, or did I need to get to work. I opted to stay. I still think of Mom as able to feed herself, but I’ve been told before and again today that aides like to help Mom eat to prevent clean-up of the enormous mess she makes. “I like to make sure she gets her nutrients,” an aide said today.

And so, I fed Mom her breakfast: French toast, a boiled egg, cereal and juice. She ate every bite. The dietary director has told me a number of times that Mom likes to eat dry cereal. But I poured milk over it and fed her bites that way, and she had no complaints. I praised her repeatedly. She was passive for most of the meal, but by the time I was giving her a final drink of juice, she was laughing at me. A little fuel was all she needed to become her usual self. I enjoyed our time together. I’d like to be there more, to help with her meals. It’s a pleasant way to spend time with her – a little bit intimate, in some weird way – and I’ve anticipated that I’d want to help the staff as much as possible once she needed help with eating. It will be interesting to see if I can pull off more frequent visits at mealtime.

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