Norma-Jean McLaren has early stage Alzheimer’s.
For the past year, we’ve been monitoring her progress as part of a clinical trial testing whether a procedure known as Deep Brain Stimulation, requiring electrodes to be implanted in her brain and powered by a battery inserted in her chest, can either improve memory capacity or at least forestall its decline. This is the third and final installment in this story, capturing events since her third of five assessments at Toronto Western Hospital (see the June 2 issue of the Vancouver Courier).
It has been up and down since Norma-Jean’s December 2015 surgery. Once healing took hold, Norma-Jean had shown definite improvement — she was much more present and engaged, better short-term memory and repetitions were rare. She enjoyed the time she spent with the many friends who volunteered to walk with her or do other activities like singing or storytelling — activities known to improve cognitive health.
But when the second assessment showed no significant progress, and turning up the voltage did not produce the flood of memories experienced in the initial procedure, Norma-Jean began to lose hope that she would regain what she had lost. A person who had once embraced life, Norma-Jean now had trouble engaging. Losing her keys could send her into deep depression.
Her husband Nathan Edelson kept the faith — loving her, making her laugh, pointing out the many times she was able to remember events that happened the day before. He also cooked meals, scheduled the friend volunteers and made arrangements for the extended travel that accompanied every assessment.
When we left them, Nathan and Norma-Jean were about to travel to Toronto for the third assessment. They were hopeful this time the current could be increased to a level that would produce a memory flood.
June: Assessment three
The third assessment did not go well. No memory flood and Norma-Jean found the tests stressful.
Each assessment for this Deep Brain Stimulation clinical trial involves two memory tests. One involves completing several problem-solving exercises, such as linking certain numbers and letters. Norma-Jean usually does very well at this objective test. The other happens in the form of an oral interview about recent activities. Norma-Jean finds this one difficult and this was the test administered first at this assessment. By the time she began the objective test, she said she felt discouraged and incompetent.
Nathan attributes her lower score to the order of the tests and requested the order be reversed for the next assessment, but he also knew she was disoriented from the travel.
The travel to Toronto is expensive and so they use the opportunity to see friends and family. And while Norma-Jean loves these visits, they also lead to confusion. She frequently asks where they are and who they’re visiting. New cities are especially frightening — the unfamiliar surroundings and the busyness, the people crush.
Either way, they came back discouraged, wanting more answers, more progress.
In July, Norma-Jean resumed visits with her Vancouver neurologist. One of the first things he did was administer a memory test to see how she’d been doing since his last visit with her.
In 2013, Norma-Jean scored 28/30 on an objective memory test taken with this doctor. Re-testing two years later revealed marked decline — her score had reduced to 23/30. This new test showed 22/30, confirming what the trial tests were showing — that deep brain stimulation was not producing reversal, but may have contributed to preventing further memory loss. Not the most desired news, but not the worst either.
However, Norma-Jean sees only the loss and the facts she’s not progressed since the surgery. She says she hates it when someone thinks they’re helping her remember by saying, “Just think about it,” because she IS thinking about it. And, despite evidence to the contrary, Nathan worries that Norma-Jean feels she is declining. He sees she has problems initiating activities and remembering ones that just happened, but doesn’t know if this is due to actual memory loss or to external factors that cause stress or to internal causes like depression.
September: Assesment four
Things went better. Nathan built in time for rest and reordering the tests made a difference. According to staff, Norma-Jean appeared “calm and alert.”
Back home, Nathan continued to worry about Norma-Jean’s level of confusion and although reassured to know that DBS had prevented further deterioration, both still hoped for reversal. “What happens next” became a central focus and Nathan began proactively seeking out new clinical trials, such as one involving ultra-sound that sounded promising and others involving new pharmaceutical drugs, hopefully located closer to home.
Nathan quickly learned the electrodes present a potential barrier to participation in any Alzheimer related trial. If active they could confound trial results and, even if not active, trial entry requires an MRI and the presence of the electrodes could be a disqualifying factor. The MRI has to be specially set so that it doesn’t impact the electrodes or harm the person and this has yet to become standard practice.
“We are hoping that the DBS will either make such a positive difference that we wouldn't consider turning it off or that the active DBS won't hinder her from getting into other promising treatments.” Nathan says, “If it does, we would have to make a hard decision about whether to turn off the DBS generator.”
However that decision is down the road. For now, they are committed to completing the DBS trial and just hope that positive difference shows up at the final assessment in December.
In early December, Nathan joins Norma-Jean and me for one of our storytelling sessions. I ask Norma-Jean how things are going and she looks at Nathan and asks him the same question. He says, “I think you’re more fragile and fearful than you’ve been,” then tells me that she continues to enjoy time with others, but prefers to be with him. “She needs to know where I am.”
Nathan is Norma-Jean’s bedrock security. She trusts him “absolutely and in all things,” and has told me she knows that everything he’s doing is because “he wants me to be alive and with him.”
December: The fifth and final assessment
It’s done. This year that began with an extraordinary surgical intervention, followed by months of roller-coaster emotions and exhausting disruptions is over. Was it worth it?
Nathan and Norma-Jean don’t yet know the final results, but preliminary results suggest a small improvement from baseline. It’s not the big reversal they’d hoped for, but enough that, although they know it limits their options for future clinical trials, they’ve decided to keep the electrodes active.
And, it’s enough for them to feel hopeful. Deep Brain Stimulation, along with supportive and creative activities in the company of good friends has had an important effect. They’re ready for more.
Wendy Bancroft is a former journalist now leading workshops in guided autobiography. She can be reached at [email protected]
