Tag Archives: Merck Alzheimer’s study

When An Alzheimer’s Study Tanks

Alzheimer's Spouse Issue, Uncategorized, , , , ,

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We got the news last week that the Ralph’s Merck study is shutting down. I got a text from the nurse at Emory to say Ralph should stop taking his blue pill but to come in for the appointment already scheduled for this week—and to bring all unused pills with us.

I was a bit startled. Not sure how I should feel but surprisingly upset. Ralph has been holding steady for so long, and I assumed the little blue pill was at least a large part of the reason. But he has not enjoyed the study. His visits, at least two hours being prodded and tested plus an hour each way to and from, always leave him feeling tuckered out and slightly woozy.

I liked Ralph being in the study. Self-centeredly, I enjoyed have a chance to talk (i.e. whine about Ralph) to the social worker whom I like as a person. Despite Ralph’s complaints, having an excuse to take him for an outing always seems like a positive thing, and gets harder and harder. And I liked that he was being checked regularly, that someone would catch any problem sooner than later.

So many studies are going on with Alzheimer’s, and there is always a new breakthrough on the horizon that seems to fizzle. The reality is that I didn’t expect this study to make a difference for Ralph but I was thinking about any children/grandchildren who may have inherited the gene. I figure whatever happens with Ralph is going to happen at this point and we’ll deal with it.

The nurse and I agreed that Ralph is probably not likely to participate in other studies. For one thing, his inability to have an MRI locks him out of most.

What saddens me, I guess, is the sense that another door is closing.

Thanking Merck For More Than Ralph’s Meds

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I was sitting down to write about one of Ralph and my typical bittersweet interactions (a story that will have to wait) when I glanced at my on-line NY Times and saw this headline: Trump Attacks Merck Chief Kenneth Frazier for Quitting Advisory Panel

I admit I felt a swell of emotion when I read the article that followed.

 Like most Americans, I have less than warm feelings about the pharmaceutical industry,  which has caused much of the rise in health costs here. While Merck is behind the Alzheimer’s study Ralph is participating in, and which I have written about here as seeming to help Ralph, I never really thought much about the company itself. Just another giant corporation to distrust.

And like most Americans I was deeply distressed by the events in Charlottesville this weekend, and particularly distressed that such unapologetically violent expression of racism, homophobia and xenophobia is becoming normalized here. I am no fan of President Trump, but I really did hope he would put ego aside and rise to this occasion.

As Mr. Frazier tweeted, in quitting the President’s panel, “America’s leaders must honor our fundamental views by clearly rejecting expressions of hatred, bigotry and group supremacy, which run counter to the American ideal that all people are created equal”

According to the Times article, Mr. Trump quickly sent a nasty tweet in response. The fact that Mr. Frazier happens to be black only adds to the drama. As I am writing this in real time, I realize that when you read this post, the news of the back and forth between the President and the CEO will probably by old hat.

But sitting here about to write about my daily private life with Ralph and Alzheimer’s, the news feels very personal. I never thought I would be proud to be associated with a drug company, and yet here I am bragging of that association.

Aren’t life’s interconnections strange and wonderful.

 

 

Alzheimer’s Friendship

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Last week I had lunch with a new friend.

A month or so earlier I received an email from E responding to a post. She mentioned that we once met at a support group meeting run by the Emory Brain Center. I didn’t recognize E’s name so wasn’t sure who she was; because of the distance involved, I attend the support group infrequently at best and haven’t been back for ages.

But as soon as I saw E in person, I remembered her. I remembered sitting across the conference table from an attractive woman whose name I didn’t catch and thinking  she is really angry—angry and exhausted—and what’s more, she’s willing to admit it! She had recently convinced her husband to downsize their home, only to realize in the selling, packing and moving that her husband was more incapacitated than she’d realized. Scrunched down in my seat, listening to E talk so honestly, I recognized that I was not facing my own complicated mix of anger, stress and protectiveness toward Ralph. E’s directness and her honesty were a truly liberating epiphany.

Now here we were over a year later, sitting in a café catching up, and as E said, it was “like looking in a mirror.” Our husbands had different careers but in many ways we shared similar lives before they were diagnosed with Mild Cognitive Impairment within months of each other and began seeing the same neurologist at the Emory Brain Center. Now both men are enrolled in the same Merck study I have written about . They both are devoted to their dog. And E and I are both…. Well, we are that same complicated mix of stress and protectiveness.

As E and I sat and talked over our salads last week One of us would begin a sentence and the other would be able it finish it. We didn’t have to sugarcoat, we didn’t have to explain. The words poured out. Being with E was so relaxing.

We lingered and lingered and then we went back to E’s house and talked some more. I drove away almost giddy with excitement, the way I felt at ten or eighteen when I met a new friend.

When Ralph was first diagnosed, one of the vows I made to myself was that I was going to maintain my life, that I would keep my friendships. And I have. In fact I have a larger circle of friends and more active social life than I used to. I have worked at building a network, professional writer friends, volunteer organization friends, political friends, literary friends, movie going friends, fun and conversation friends, family friends.

And online friends through the Memoryland community—and it feels to me like a community—along with other caregiver/caregivee blog communities.

Now I have an actual Alzheimer’s friend.

Taking Stock For Future Reference

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In preparation for Ralph taking part in testing of the new Merck anti-plague drug, our nurse at the Emory Brain Center  asked me to make a list for the nurse to show Ralph’s current baseline. Of course, I put it off (just as I often put off writing here because it means facing stuff I may not feel like facing). But now  the list is done and it seems worth sharing.

WHAT RALPH CONTINUES TO DO:

Make small repairs around the house when asked; Pick vegetables and do light farmwork when asked; Take his meds on his own from his filled weekly pillbox; Make his own cold breakfast and lunch; Make coffee as needed; Use the microwave; Buy beer at the convenience store; Feed the dogs daily; Drive around the farm in his truck to “walk” the dogs; Dress, bathe, shave etc on his own; Talk on the phone at length to his sister and oldest son; Attend his art class; Walk occasionally on a farm path circuit; Watch nightly news and Jeopardy over dinner; Listen to NPR on the radio; Read quality full length books of fiction and non-fiction; Use his credit card (as long as no tips are involved); Pay cash for small purchases; Cut his own hair ; Turn on the gas grill and change the gas canister when needed; Interact socially with people who visit or whom we visit; Fish from a dock; Clean fish he catches; Share stories from his childhood; Offer witty one-liners out of the blue; Analyze a situation/problem presented to him and show insight even though he forgets his analysis (and the problem) shortly afterwards

WHAT RALPH CAN’T DO ANYMORE:

Pay attention to business or financial matters—important since his professional life was all about real estate investing and managing; Use the stove; Use the grill although he does turn it on when I ask; Drive on his own except those places noted above or under duress and if I am there to give him directions; Use his boat; Hunt ; Go to movies—says he finds them “boring”; Watch narrative television dramas or comedies except on rare occasions; Listen to music on his own; Keep up with or show interest in family and friend activities; Remember details of relationship history with friends

 

WHAT RALPH MAY OR MAY NOT DO:

He may still be able to play guitar, but shows no interest; He says he can drive tractor (and was told it would be ok by Stephanie) but avoids doing so.; While he goes to art class, his output has greatly diminished; he spends most of his “painting” time sitting in his office smoking and listening to talk radio; He claims to take walks but I have not witnessed him walking

 

RALPH’S TEMPERAMENT CHANGES:

Extremely passive—used to be extremely assertive; Never gets angry—used to be hot tempered; Without curiosity—used to be extremely curious and factually knowledgeable ; Emotionally totally focused on his dogs; Less outgoing but more jolly most of the time.  

I kind of love having this information down in black and white and red and blue and green.  In a year or two or five, I will look back at what I recorded–whether with relief that the Merck pill has worked to keep Ralph at his current activity level or in bittersweet nostalgia for this time when the Can Dos on Ralph’s list are several lines  longer than the Can’t Dos and Maybes list combined. May it stay this way for as long as possible.

 

P.S. From Ralph: What Study?

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So just yesterday I wrote about the study Ralph has agreed to participate in to study the effects of a new drug that might inhibit the plaque build up that leads to Alzheimer’s.

This morning over coffee we were having a perfectly normal discussion of the news, what to have for breakfast, etc., when I mentioned to Ralph that maybe I should cancel the check up appointment with his internist coming up this week since he would be getting checked so thoroughly through the study.

He looked at me and said, “What study?”

I have probably mentioned that Ralph’s memory issues have a silver lining, that he particularly forgets any moment that has produced anxiety or unpleasantness in his past—in other words any argument he has had with anyone, any disappointment he suffered in the past, any moments of tension or distress. Evidently, he has forgotten our trek last week because it was anxiety producing–which is fine because if he ultimately gets rejected he won’t care, and if he is accepted and has to go through more tests and appointments, each will fade as soon as it’s over.

Another win-win.

P.P.S.

For Ralph and me at this point in our journey, participating in trials and studies concerning Alzheimer’s is always win-win, but it is important to recognize that participation in experimental studies is a very personal decision and not the right decision for everyone or every situation. When Ralph was first diagnosed, we signed up for a trial that involved one and one exercises; it didn’t go well. Rick hated the questions and resented the process. Later, when he attempted an MRI for another possible study, we encountered the bb pellet problem. [For those who were curious, Ralph’s parents were very lax about firearms and allowed Ralph to have a BB rifle when he was around six. I picture him as a tow-headed little “woods booger,” as he called himself, in his favorite cowboy shirt–which he still has–chasing after birds and squirrels until he promptly shot himself in the tongue (luckily not the eye). His parents may or may not have taken him to a doctor, but nothing was done. Ralph forgot he had  the BB  until a dentist noticed it on an x-ray thirty years later. Rick said his mouth got quite hot during the MRI, and the pellet distorted how the MRI works, making it unreadable.] At some point I talked to a social worker who pointed out that no one should ever feel pressured to participate in studies and that health and emotional well-being come first.

 

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.