Anne, Stan, and grandson Louie during vacation in Mexico, 2019. INSET: Anne post-op in 2017.
I was an artist.
I worked in mixed media, Papier-mâché, and collage, inspired by dreams, birds, mystery. I had gallery shows and participated in studio tours.
Educated in thanatology, I worked in hospice care as a volunteer and education director for Hospice Caledon, an organization that supports people facing life-limiting illness and grief.
I trained volunteers who helped people through their transition.
Parkinson's disease changed all that.
My hands and my head were not coordinating, so it was impossible to do my art.
It started as a twitch in my leg. During a hospice workshop, my right leg started vibrating in a way I hadn't experienced before. I told a friend, "This can't be good."
Over the next year, my right foot vibrated more and more. I could not sleep well. In my dreams people lurked in corners, in dark places, and behind castle doors. I knew they were there and couldn't avoid the ambush. I shrieked and woke everyone in the house.
An anxiety attack—something I had also never experienced before—came next.
During a class I was teaching, my mouth got so dry, I couldn't speak. I stood in front of the class for three or four minutes, unable to continue. I pushed through and finished the class. That's when I realized this was more than jiggling legs.
That's when I went to see a doctor.
A Diagnosis
My first doctor, when I suggested it might be Parkinson's, didn't believe me. She sent me to a neurologist who told me I had to meditate more and calm myself.
A friend from hospice told me to phone the Toronto Western Hospital Movement Disorders Clinic. In January 2010, I was diagnosed with Parkinson's disease.
The doctor, a fellow, got all my stats and asked a lot of questions. He was so excited he knew what it was, he exclaimed, "You've got Parkinson's!" like it was the best thing ever. I must say, that wasn't the best news, but at least I finally had a diagnosis.
I could choose whether to take medication or not. The doctor said, "If Parkinson's is compromising your lifestyle, you should consider taking levodopa."
"Well I can't run my classes, I can't do my art, so it's compromising me," I said. And my health was going downhill. The shaking—my whole body moved—sleeping was horrible. Two to four hours max a night was usual. I had terrible anxiety and panic attacks and had to quit work.
So I started taking levodopa. It's taken in a four-hour cycle, but the medication didn't last the full time. I developed dyskenisia, a side effect of the medication that made me experience uncontrolled, involuntary movements. I was edgy, irritable, and focused on my watch like a drug addict. I'd lie on the couch, feel crummy and tired, and wait.
The medication cycle restricted where I could go. Fearing the "off" period, I avoided interaction with lifelong friends, which increased my feeling of social isolation. They would come over and cook with me and read to me sometimes, and that was fine, as long as it was during an "on" period.
There was incontinence, constipation, and fatigue.
I lost fine motor skills, like writing. And painting. My hands and my head were not coordinating, so it was impossible to do my art.
It was a terrible time.
The worst symptoms—what pushed me to consider DBS—were the symptoms no one could see. The anxiety and depression were so bad, the sleeplessness, not eating.
I projected a lot of my discomforts onto Stan. I reacted so badly to him. I actually separated from him briefly on two separate occasions and lived in a separate space—a self-imposed isolation. There wasn't anything he could do to help me really except sit back and watch.
I tried alternative therapies—a naturopath, an osteopath, a reflexologist and a Chinese medicine practitioner—but nothing seemed to help.
I felt like I was dying. Certain parts of my life were being taken away from me. I was a perfectionist, and I felt imperfect. It was a horrible feeling, to not be in control of myself.
The DBS Decision
I was familiar with DBS, a procedure that involves a neurosurgeon drilling small holes into your skull and implanting electrical leads deep in your brain to modify neural activity, reducing involuntary movements.
But I was convinced I'd never do it. I was brought up in a family that believed 'doctors make you sick and hospitals kill you.'
I worried the room wouldn't be sterile. Someone's cutting into your brain, you don't know what's going to happen. They're putting things in your body. I didn't want to risk possible infection.
And my doctor said he couldn't promise he would actually do the operation. It might be a fellow, but he'd be in the background in case anything went wrong. I wasn't comfortable with that arrangement.
When filmmakers Taryn Southern and Elena Gaby decided to make a documentary about people whose lives were changed by cutting-edge brain implants--and I agreed to participate—my doctor said he would for sure do the operation. They couldn't risk anything happening on the operating table on camera, so most of my fears went away.
My family supported the decision. My mother had trigeminal neuralgia, which is a very painful facial condition. She also had a stroke and what we now believe to be Parkinson's. My father, a retired dentist, managed her care and didn't give her the opportunity to see a specialist.
I felt them running the knife across my scalp, and drilling two holes in my head, but only as pressure, not pain.
When we were talking about DBS, my son, Joseph, said, "How can you not do this, for the sake of your family? Because if you don't, you'll end up like Grandma, who, for the last few years of her life, just lay on a couch because she didn't get any kind of outside help. If you even have a chance to improve your life or give yourself five extra years, why wouldn't you do that, for our sake? Are we not worth that?"
That talk really affected me, and I realized I had to try. Even though it was difficult, I had to be brave for my family.
Surgery, Recovery, and Tweaking
You have to be awake for part of the procedure—I was awake enough that my subconscious could hear, because they had to know how far to insert the electrodes. DBS targets the troublemaking areas of the brain. There's a one millimeter difference between success and failure.
I felt them running the knife across my scalp, and drilling two holes in my head, but only as pressure, not pain.
Once they were inside, they asked me to move parts of my body to see whether the right neurons were activated.
They put me to sleep to put a battery-powered neurostimulator in my chest. A wire that runs behind my ear and down my neck connects the electrodes in my brain to the battery pack. The neurostimulator creates electric pulses 24 hours a day.
I was moving around almost immediately after surgery. Recovery from the stitches took a few weeks, but everything else took a lot longer.
I couldn't read. My motor skills were still impaired, and my brain and my hands weren't yet linked up. I needed the device to be programmed and tweaked. Until that happened, I needed help.
The depression and anxiety, though, went away almost immediately. From that perspective, it was like I never had Parkinson's. I was so happy.
When they calibrated the electrodes, they adjusted how much electrical current goes to any one of four contact points on the left and right sides of the brain. If they increased it too much, a leg would start shaking, a foot would start cramping, or my tongue would feel thicker. It took a while to get it calibrated correctly to control the symptoms.
First it was five sessions in five weeks, then once a month, then every three months. Now I visit every six months. As the disease progresses, they have the ability to keep making adjustments. (DBS controls the symptoms, but it doesn't cure the disease.)
Once they got the calibration right, my motor skills improved. I could walk without shuffling. My muscles weren't stiff and aching, and the dyskinesia disappeared. But if I turn off the device, my symptoms return almost immediately.
Some days I have more fatigue than others, and sometimes my brain doesn't click. And my voice got softer – that's a common side effect of this operation. But I'm doing so much better than before.
I have a quality of life I didn't have before. Before COVID-19 hit, Stan and I traveled, went to concerts, movies, galleries, and spent time with our growing family.
I cut back the levodopa from seven-and-a-half pills a day to two-and-a-half. I often forget to take my medication until I realize I'm feeling tired or anxious.
Best of all, my motivation and creative ability have clicked in.
I am an artist—again.
I'm painting every day. It's what is keeping me sane. It's my saving grace.
I'm not perfect. But I am Anne. Again.
Avalanche rescue dogs train to find and dig out people buried in snow slides
By the time he is three, Lume, like Huckleberry, will be a fully trained avy pup and will join seven other avy dogs on Breckenridge ski patrol team. Some of the team members, both human and canine, are also certified to work with Colorado Rapid Avalanche Deployment, a coordinated response team that works with the Summit County Sheriff’s office for avalanche emergencies outside of the ski slopes’ boundaries.
There have been 19 avalanche deaths in the U.S. this season, according to avalanche.org, which tracks slides; eight in Colorado. During the entirety of last season there were 17. Avalanche season runs from November through June, but avalanches can occur year-round.
High tech and high stakes
Complementing avy dogs’ ability to smell people buried in a slide, avalanche detection, rescue and recovery is becoming increasingly high tech. There are transceivers, signal locators, ground scanners and drones, which are considered “games changers” by many in avalanche rescue and recovery
For a person buried in an avalanche, the chance of survival plummets after 20 minutes, so every moment counts.
A drone can provide thermal imaging of objects caught in a slide; what looks like a rock from far away might be a human with a heat signature. Transceivers, also known as beacons, send a signal from an avalanche victim to a companion. Signal locators, like RECCO reflectors which are often sewn directly into gear, can echo back a radar signal sent by a detector; most ski resorts have RECCO detector units.
Research suggests that Ground Penetrating Radar (GPR), an electromagnetic tool used by geophysicists to pull images from inside the ground, could be used to locate an avalanche victim. A new study from the Department of Energy’s Sandia National Laboratories suggests that a computer program developed to pinpoint the source of a chemical or biological terrorist attack could also be used to find someone submerged in an avalanche. The search algorithm allows for small robots (described as cockroach-sized) to “swarm” a search area. Researchers say that this distributed optimization algorithm can help find avalanche victims four times faster than current search mechanisms. For a person buried in an avalanche, the chance of survival plummets after 20 minutes, so every moment counts.
An avy dog in training is picking up scent
Sarah McLear
While rescue gear has been evolving, predicting when a slab will fall remains an emerging science — kind of where weather forecasting science was in the 1980s. Avalanche forecasting still relies on documenting avalanches by going out and looking,” says Ethan Greene, director of the Colorado Avalanche Information Center (CAIC). “So if there's a big snowstorm, and as you might remember, most avalanches happened during snowstorms, we could have 10,000 avalanches that release and we document 50,” says Greene. “Avalanche forecasting is essentially pattern recognition,” he adds--and understanding the layering structure of snow.
However, determining where the hazards lie can be tricky. While a dense layer of snow over a softer, weaker layer may be a recipe for an avalanche, there’s so much variability in snowpack that no one formula can predict the trigger. Further, observing and measuring snow at a single point may not be representative of all nearby slopes. Finally, there’s not enough historical data to help avalanche scientists create better prediction models.
That, however, may be changing.
Last year, an international group of researchers created computer simulations of snow cover using 16 years of meteorological data to forecast avalanche hazards, publishing their research in Cold Regions Science and Technology. They believe their models, which categorize different kinds of avalanches, can support forecasting and determine whether the avalanche is natural (caused by temperature changes, wind, additional snowfall) or artificial (triggered by a human or animal).
With smell receptors ranging from 800 million for an average dog, to 4 billion for scent hounds, canines remain key to finding people caught in slides.
With data from two sites in British Columbia and one in Switzerland, researchers built computer simulations of five different avalanche types. “In terms of real time avalanche forecasting, this has potential to fill in a lot of data gaps, where we don't have field observations of what the snow looks like,” says Simon Horton, a postdoctoral fellow with the Simon Fraser University Centre for Natural Hazards Research and a forecaster with Avalanche Canada, who participated in the study. While complex models that simulate snowpack layers have been around for a few decades, they weren’t easy to apply until recently. “It's been difficult to find out how to apply that to actual decision-making and improving safety,” says Horton. If you can derive avalanche problem types from simulated snowpack properties, he says, you’ll learn “a lot about how you want to manage that risk.”
The five categories include “new snow,” which is unstable and slides down the slope, “wet snow,” when rain or heat makes it liquidly, as well as “wind-drifted snow,” “persistent weak layers” and “old snow.” “That's when there's some type of deeply buried weak layer in the snow that releases without any real change in the weather,” Horton explains. “These ones tend to cause the most accidents.” One step by a person on that structurally weak layer of snow will cause a slide. Horton is hopeful that computer simulations of avalanche types can be used by scientists in different snow climates to help predict hazard levels.
Greene is doubtful. “If you have six slopes that are lined up next to each other, and you're going to try to predict which one avalanches and the exact dimensions and what time, that's going to be really hard to do. And I think it's going to be a long time before we're able to do that,” says Greene.
What both researchers do agree on, though, is that what avalanche prediction really needs is better imagery through satellite detection. “Just being able to count the number of avalanches that are out there will have a huge impact on what we do,” Greene says. “[Satellites] will change what we do, dramatically.” In a 2022 paper, scientists at the University of Aberdeen in England used satellites to study two deadly Himalayan avalanches. The imaging helped them determine that sediment from a 2016 ice avalanche plus subsequent snow avalanches contributed to the 2021 avalanche that caused a flash flood, killing over 200 people. The researchers say that understanding the avalanches characteristics through satellite imagery can inform them how one such event increases the magnitude of another in the same area.
Avy dogs trainers hide in dug-out holes in the snow, teaching the dogs to find buried victims
Sarah McLear
Lifesaving combo: human tech and Mother Nature’s gear
Even as avalanche forecasting evolves, dogs with their built-in rescue mechanisms will remain invaluable. With smell receptors ranging from 800 million for an average dog, to 4 billion for scent hounds, canines remain key to finding people caught in slides. (Humans in comparison, have a meager 12 million.) A new study published in the Journal of Neuroscience revealed that in dogs smell and vision are connected in the brain, which has not been found in other animals. “They can detect the smell of their owner's fingerprints on a glass slide six weeks after they touched it,” says Nicholas Dodman, professor emeritus at Cummings School of Veterinary Medicine at Tufts University. “And they can track from a boat where a box filled with meat was buried in the water, 100 feet below,” says Dodman, who is also co-founder and president of the Center for Canine Behavior Studies.
Another recent study from Queens College in Belfast, United Kingdom, further confirms that dogs can smell when humans are stressed. They can also detect the smell of a person’s breath and the smell of the skin cells of a deceased person.
The emerging avalanche-predicting human-made tech and the incredible nature-made tech of dogs’ olfactory talents is the lifesaving “equipment” that Leffler believes in. Even when human-made technology develops further, it will be most efficient when used together with the millions of dogs’ smell receptors, Leffler believes. “It is a combination of technology and the avalanche dog that will always be effective in finding an avalanche victim.”
