Tag Archives: neuropsychology

Ralph “Passes” the Test to Participate in Alzheimer’s Study

Research, Uncategorized, , , , , , , , , ,

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The research nurse at Emory’s Brain Center called a week ago asking if we—Ralph and I because caregivers play an active role—would be interested in participating in a research study.  The nurse had already looked at Ralph’s chart and said she thought he’d be a good fit.

The study is  being conducted by the pharmaceutical company Merck  on a possible treatment to slow the progression of Alzheimer’s. As the Merck brochure says, “This study is designed to test the idea that inhibiting a specific enzyme, BACE, may slow or stop the progression of Alzheimer’s disease. The drug in this study, MK-8931, is a BACE inhibitor, which means it helps stop the BACE enzyme from producing amyloid beta peptides. Amyloid plaque deposits in the brain may be the underlying cause of Alzheimer’s disease. By inhibiting the actions of the BACE enzyme, it may in turn help stop the formation of those amyloid plaque deposits.”

In other words, the study hopes to find a way to slow down the build up of the plaque that is assumed to cause Alzheimer’s and that is evident in Ralph’s brain according to the spinal tap his doctor administered several years ago.

I glanced at Ralph, who was on the couch having his afternoon nap, and said yes, I thought we might like to participate. I was actually quite excited. In the past Ralph has not qualified for studies and drug trials like this because of his MRI problem—the bb pellet that has been lodged in his tongue since a shooting accident when he was eight-years-old not only uncomfortably heats up during the procedure but distorts results—but this particular study has dropped the MRI requirement.

The nurse immediately emailed the study’s descriptions and consent forms, which I read and explained to Ralph. And explained again.

“I hate taking pills.”/“You won’t even notice the extra pill.”

“How often will I have to go see the doctor?”/“Every other month.”

“What if I’m stuck with the placebo? It’ll be a waste of time?”/“But the study will give you the real pill afterwards, and in any case, the study will benefit others, like your kids who are at genetic risk.”

“Ok, it sounds good. But I hate taking pills.” The familiar loop repeated itself over and over, and each time he ended up agreeing to participate, if with tepid enthusiasm.

Three days later we were at Emory. (Evidently the study, which has already been going for a year or two, needed a few extra last-minute entries and the deadline got pushed up so we were a rush job.)

Ralph took two memory/cognitive tests which have qualified him although “passing the test” is not the term I’d use exactly, at least not for the second test in which the cut off number had to do with having too much memory. Ralph evidently “passed” with flying colors because his memory score was very low. I have to say when the nurse whispered the news to me, my heart sank a little.

Now we are waiting for Merck to look at the scores before scheduling some physical tests. If Ralph makes it through through those, he will begin taking the extra pill with his Namenda and Donepezil daily. There is a one-third chance or receiving a placebo, a one-third chance of receiving a lowish dosage of the medication, and a one-third chance of receiving a higher dosage. I will be expected to keep track of his progress in some form that has not yet been clarified—I warned the research nurse that I may be travelling some in January after my daughter gives birth, but she said that would not be a problem.

Once Ralph starts the pill, we will meet every two months with medical personnel, including his neurologist, a dermatologist and the research nurse, for the next two years. When the two years are up, if he’s been taking a placebo, Ralph will then receive the higher dosage of the actual medication; otherwise he will continue on the dosage he started with.

I see no downside (except, if I am honest, the extra effort required on my part) and plenty of pluses. Because we are entering the study late, there is plenty of knowledge about side effects—minor and rare. The frequent visits to Emory are a great excuse to get Ralph out of the house and into the world. Plus he will be receiving more detailed health check ups on a more frequent basis. We will no doubt have a better sense of where he is on the continuum than we do now.

And, although he says he doesn’t care, the idea of doing something useful for others, of being part of a cause larger than himself, will give him a sense of purpose; even at Emory the other day I saw the shift from anxiety (which may have caused his low memory score) to energetic good cheer as he interacted with staff.

And if the medication makes a noticeable difference in Ralph’s condition, well that would be great too. Fingers crossed.

I Meet Another MCI Spouse

Caregiver/Spouse Issues, Support and Research, , , , , , , ,

We are a little early for Ralph’s third of five sessions in an Emory University study on visual aids on whether certain visual clues will improve memory retention for those with MCI/Early Alzheimer’s. (There are so many studies out there right now and they all need volunteer subjects. But not every patient qualifies to be in a study. MRIs are usually required and there are often other restrictions as well but it is worth going to the Alzheimer’s Association website to check out what studies are going on in your neighborhood.)

Ralph’s study is concentrated over a two-week period. Ralph says the “homework” aides the researcher has recommended don’t help but he has returned willingly enough. I don’t sit in during the sessions but I come alone for moral support and read old magazines in the drab but not uncomfortable waiting room.

This afternoon another couple sits down in the waiting room with us before Ralph gets called in. I size them up: both husband and wife are a little older than us, probably early seventies, casually but tastefully dressed, whispering and smiling at each other with just an edge of nervousness that says they are first timers. She is lively and chatty, he more passive. Like Ralph.

But a few minutes before Ralph goes off with his researcher, another researcher comes for the wife. The husband and I are left together with the dated magazines. As we begin to chat about the weather and the time it took to get to the building, I am dying to bring up the obvious—if both of our spouses are in this study, they must both have the same diagnosis—but I don’t want to intrude on his privacy.

Before I can stop myself the letters M, C, and I are out of my mouth.

Yep, his wife is about a month behind “Ralph” in the process, not necessarily in terms of her degree of cognitive impairment but in terms of when she was diagnosed. She is seeing Doc L’s partner. She has just started the same drug (donezepril) Ralph is on. Her husband’s not sure what comes next.

I am almost giddy as we start comparing notes. There is so much to talk about that I haven’t been able to share with anyone else. Our hour or two together in that dinghy room flies by. I doubt I’ll ever see him again. I don’t know his name.

But for the first time, I realize I am not alone

Drinking and Smoking and MCI

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I know, I know, if drinking and smoking are not good for anyone, their effect on people with memory loss has to be worse.

In fact one of the first things Ralph’s primary physician said after the diagnosis—no alcohol, no smoking.

But bad habits are hard to give up. And making someone else give them up is even harder. And to be honest, I’ve begun to wonder if maybe Ralph shouldn’t hang on to a few bad habits for a sense of normalcy. There are so many aspects of Ralph-ness he’s already letting go—the real estate dealmaker has lost his touch for number-crunching, the Bob Dylan fanatic doesn’t listen to music any more, the husband who used to only half-jokingly call himself the captain of the family passively agrees with every decision I make. Not that I’m complaining because Ralph’s temper has disappeared or because he’s become a sweeter, gentler human being; but the changes have spooked me a little.

God knows that for most of the length of our 35-year marriage I nagged Ralph repeatedly to cut down on both booze and nicotine. I have always been a bit of a stick-in-the-mud prude. I never smoked even as a kid and my drinking is limited to a very occasional glass of wine; after two I’m tipsy or worse. But I understand addictive habits; if there’s chocolate or ice cream in the house watch out.

Ralph has downed at least three or four cans a night for as long as I’ve known him. Well, actually, he probably drank closer to a six-pack many days. In fact when Ralph first started showing signs of cognitive loss, months before the MCI diagnosis, I thought his problems had to do with his Natty-Lite consumption (and I still believe it didn’t help). We talked about the connection—that he was always fuzzier at night, the same time of day he imbibed—and Ralph has actually cut down on his own. Now he drinks one or two, never more than three cans of lite beer around dinnertime, and not every night. Drinking less has obviously not cured his memory issues, and do I really want to take that bit of pleasure away?

As for smoking, Ralph went cold turkey when the kids were small and stayed nicotine free for over twenty years, but it only took one puff on a cigar at a Fourth of July party to get him hooked again five years ago. In retrospect he started smoking again around the same time that his memory began to slip, before we acknowledged it except as a joke although he may have been more worried privately than he let on.

At first he smoked just a cigar or two a day. He kept saying he was about to quit. Instead, he smoked more. He never smoked in the house; instead he’d find excuses to go off in his car or sit bundled up on the front porch on the coldest winter day lighting one cigar after another. All my nagging fell on deaf ears. The more anxious he became about his memory, the more he smoked. By the time he was diagnosed with MCI last spring, he was up to a pack a day. And remember, we’re talking a pack of cigars, cheap, skinny, smelly ones that have to be stronger than the equivalent number of cigarettes.

So last month, in an ironic turn of events, I found myself convincing him to switch back to cigarettes for two reasons: 1., he’d have to smoke a lot more of them to hit the same nicotine level he was reaching with the cigars and 2., my more selfish reason, the cigarettes wouldn’t stink up his clothes as much. The old Ralph would have fought me, but the new Ralph made the switch.

Now I remember how much I hate cigarettes smoke.

But two days ago I came across a 2012 Georgetown University study showing that nicotine may actually slow down MCI. I couldn’t quite believe, so I talked to the nurse practitioner in our neurologist’s office. She said the results aren’t in on Alzheimer’s-related dementia there is some evidence that nicotine helps with Parkinson’s.

Meanwhile, Ralph’s down to less than half a pack a day. So now I’m feeling guilty not only because he still drinks but also because he might quit smoking because of me. But I can’t bring myself to show him the Georgetown article.

Diagnosis: Mild Cognitive Impairment Limbo

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In my last entry Ralph realized his memory problem was serious enough to require a doctor’s visit. His doctor Andy recommended we make an appointment with a neurologist specializing in memory issues but warned it might take months before we saw anyone. Meanwhile he urged Ralph to get his cognitive skills tested by a neuropsychologist soon as possible.

The neuropsychologist was not exactly warm and snuggly as he asked Ralph preliminary questions. Ralph was defensive. Well, so was I sitting silently by his side. The tests themselves took three hours;  I waited in the lobby with a book. Driving home, Ralph said the tests were silly. He thought he aced them.

There was nothing silly about the second meeting, during which the psychologist gave us the test results. He did not mince his words in person or in his written report. Although Ralph’s problem solving skills and IQ were still high (though not as high as they used to be), his memory was down in the single digit percentages: MILD COGNITIVE IMPAIRMENT was definite and EARLY ALZHEIMER’S likely.

Ralph was angry, unwilling to accept the results. I didn’t tell him that I secretly felt relief because someone was taking my reality seriously. Or that I was petrified because someone was taking my reality so seriously, that it had a name.

Three months later we had our first appointment with our neurologist at the Memory Clinic.

More tests, same conclusion. But partly because Doc L. was such an easy-going, approachable and likable guy , we came away less worried. Mild Cognitive Impairment didn’t sound so bad coming from him.

A month or so later Doc L. did the spinal tap, a procedure that is relatively new in diagnosing Alzheimer’s but has proved extremely accurate.

A few days after that, I was caught in rush hour traffic and almost didn’t answer my beeping cell phone.But as soon as Doc L. said his name, I pulled over and parked…shocked he was calling me personally.

Ralph’s spinal tap showed the plaque build-up consistent with Alzheimer’s.

“But he doesn’t have Alzheimer’s Disease now.” Doc quickly reminded me. “He is still diagnosed with the condition MCI.” He has the condition, not the disease.

Not yet. Mild Cognitive Impairment– MCI –may not be Alzheimer’s Disease, but the plaque build up confirms that Ralph is not one of those lucky people diagnosed with MCI  who don’t have brain changes consistent with Alzheimer’s and might get better(go to Watching the Lights Go Out for a ray of ambiguous optimism). On the other hand, even for those like Ralph with telling changes, the boundary between MCI and Alzheimer’s is blurry at best, and research shows the timeline for development is unpredictable. It could take two years or twenty. Meanwhile, we have rewritten our wills, closed Ralph’s business and put our financial house in order.

“MCI,” I say when Ralph asks me to remind him yet again about his diagnosis. MCI I tell our kids and closest friends. MCI I tell myself.

No need to speak the word “Alzheimer’s aloud these days. Not yet, I tell myself, not yet.

Ralph Decides: “Something Is Wrong With My Memory”

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So… Ralph’s memory continued getting worse. He repeated conversations over and over. He forgot what day it was. He forgot business decisions. Then an acquaintance invited Ralph fishing in southern Louisiana. Ralph loves fishing and this was a fisherman’s dream trip: catching red fish all day, telling fish stories over great food and drink all night. Ralph was excited if a little nervous (ok, more than a little which I refused to take seriously), especially on the way to airport, but when he called from Louisiana the first night, he said the fishing was terrific and I could hear laughter in the background. I thought, great, he’s made some new friends. As soon as Ralph got home, he admitted the trip was torture. He could not keep track of names and faces. Worse he had trouble remembering which room was his. Smiling ruefully, he described finding excuses to leave the carousing so he could prowl the halls, poking his head into bedroom doors until he recognized his duffel bag and went to bed. Then he added the shocker: “I am going to make an appointment to see the doctor.” It was Ralph’s decision to see his doctor. Neither of us had considered the possibility that I should accompany Ralph to the appointment. Instead I printed out information I’d Googled about Lyme disease  as a cause for memory loss. Still in denial, I told myself Ralph’s doctor would prescribe antibiotics to clear up the problem. “Andy seems to think it could be serious,” Ralph reported almost sheepishly. “He’s going to set up a test.” Andy called us the next night (never a good sign when a doctor calls you at home at night) and suggested we use separate extensions so I could record/remember what he said. He gave us the name of a highly respected neurologist specializing in memory issues but warned it would take months to get an appointment. In the meantime we arranged to meet with a neuropsychologist who could give Ralph a battery of tests for a preliminary diagnosis.

And just like that we fell down the rabbit hole.