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.
Rodney Gorham, an Australian living with ALS, has reconnected with the world, thanks to a brain-machine interface called the Stentrode.
The brain-computer interface enabling this feat is called the Stentrode. It's the brainchild of Synchron, a company backed by Amazon’s Jeff Bezos and Microsoft cofounder Bill Gates. After Gorham’s neurologist recommended that he try it, he became one of the first volunteers to have an 8mm stent, laced with small electrodes, implanted into his jugular vein and guided by a surgeon into a blood vessel near the part of his brain that controls movement.
After arriving at their destination, these tiny sensors can detect neural activity. They relay these messages through a small receiver implanted under the skin to a computer, which then translates the information into words. This minimally invasive surgery takes a day and is painless, according to Gorham. Recovery time is typically short, about two days.
When a paralyzed patient thinks about trying to move their arms or legs, the motor cortex will fire patterns that are specific to the patient’s thoughts.
When a paralyzed patient such as Gorham thinks about trying to move their arms or legs, the motor cortex will fire patterns that are specific to the patient’s thoughts. This pattern is detected by the Stentrode and relayed to a computer that learns to associate this pattern with the patient’s physical movements. The computer recognizes thoughts about kicking, making a fist and other movements as signals for clicking a mouse or pushing certain letters on a keyboard. An additional eye-tracking device controls the movement of the computer cursor.
The process works on a letter by letter basis. That’s why longer and more nuanced responses often involve some trial and error. “I have been using this for about two years, and I enjoy the sessions,” Gorham typed during our chat session. Zafar Faraz, field clinical engineer at Synchron, sat next to Gorham, providing help when required. Gorham had suffered without internet access, but now he looks forward to surfing the web and playing video games.
Gorham, age 63, has been enjoying Stentrode sessions for about two years.
Rodeny Dekker
The BCI revolution
In the summer of 2021, Synchron became the first company to receive the FDA’s Investigational Device Exemption, which allows research trials on the Stentrode in human patients. This past summer, the company, together with scientists from Icahn School of Medicine at Mount Sinai and the Neurology and Neurosurgery Department at Utrecht University, published a paper offering a framework for how to develop BCIs for patients with severe paralysis – those who can't use their upper limbs to type or use digital devices.
Three months ago, Synchron announced the enrollment of six patients in a study called COMMAND based in the U.S. The company will seek approval next year from the FDA to make the Stentrode available for sale commercially. Meanwhile, other companies are making progress in the field of BCIs. In August, Neuralink announced a $280 million financing round, the biggest fundraiser yet in the field. Last December, Synchron announced a $75 million financing round. “One thing I can promise you, in five years from now, we’re not going to be where we are today. We're going to be in a very different place,” says Elad I. Levy, professor of neurosurgery and radiology at State University of New York in Buffalo.
The risk of hacking exists, always. Cybercriminals, for example, might steal sensitive personal data for financial reasons, blackmailing, or to spread malware to other connected devices while extremist groups could potentially hack BCIs to manipulate individuals into supporting their causes or carrying out actions on their behalf.
“The prospect of bestowing individuals with paralysis a renewed avenue for communication and motor functionality is a step forward in neurotech,” says Hayley Nelson, a neuroscientist and founder of The Academy of Cognitive and Behavioral Neuroscience. “It is an exciting breakthrough in a world of devastating, scary diseases,” says Neil McArthur, a professor of philosophy and director of the Centre for Professional and Applied Ethics at the University of Manitoba. “To connect with the world when you are trapped inside your body is incredible.”
While the benefits for the paraplegic community are promising, the Stentrode’s long-term effectiveness and overall impact needs more research on safety. “Potential risks like inflammation, damage to neural tissue, or unexpected shifts in synaptic transmission due to the implant warrant thorough exploration,” Nelson says.
There are also concens about data privacy concerns and the policies of companies to safeguard information processed through BCIs. “Often, Big Tech is ahead of the regulators because the latter didn’t envisage such a turn of events...and companies take advantage of the lack of legal framework to push forward,” McArthur says. Hacking is another risk. Cybercriminals could steal sensitive personal data for financial reasons, blackmailing, or to spread malware to other connected devices. Extremist groups could potentially hack BCIs to manipulate individuals into supporting their causes or carrying out actions on their behalf.
“We have to protect patient identity, patient safety and patient integrity,” Levy says. “In the same way that we protect our phones or computers from hackers, we have to stay ahead with anti-hacking software.” Even so, Levy thinks the anticipated benefits for the quadriplegic community outweigh the potential risks. “We are on the precipice of an amazing technology. In the future, we would be able to connect patients to peripheral devices that enhance their quality of life.”
In the near future, the Stentrode could enable patients to use the Stentrode to activate their wheelchairs, iPods or voice modulators. Synchron's focus is on using its BCI to help patients with significant mobility restrictions—not to enhance the lives of healthy people without any illnesses. Levy says we are not prepared for the implications of endowing people with superpowers.
I wondered what Gorham thought about that. “Pardon my question, but do you feel like you have sort of transcended human nature, being the first in a big line of cybernetic people doing marvelous things with their mind only?” was my last question to Gorham.
A slight smile formed on his lips. In less than a minute, he typed: “I do a little.”
XPRIZE founder and chairman Peter Diamandis launches XPRIZE Healthspan at an event on November 29.
In this competition, called XPRIZE Healthspan, multiple awards are available, depending on what’s achieved, with support from the nonprofit Hevolution Foundation and Chip Wilson, the founder of Lululemon and nonprofit SOLVE FSHD. The biggest prize, $81 million, is for improvements in cognition, muscle and immunity by 20 years. An improvement of 15 years will net $71 million, and 10 years will net $61 million.
In our conversation for this episode, Peter talks about his plans for XPRIZE Healthspan and why exponential technologies make the current era - even with all of its challenges - the most exciting time in human history. We discuss the best mental outlook that supports a person in becoming truly innovative, as well as the downsides of too much risk aversion. We talk about how to overcome the negativity bias in ourselves and in mainstream media, how Peter has shifted his own mindset to become more positive over the years, how to inspire a culture of innovation, Peter’s personal recommendations for lifestyle strategies to live longer and healthier, the innovations we can expect in various fields by 2030, the future of education and the importance of democratizing tech and innovation.
In addition to Peter’s pioneering leadership of XPRIZE, he is also the Executive Founder of Singularity University. In 2014, he was named by Fortune as one of the “World’s 50 Greatest Leaders.” As an entrepreneur, he’s started over 25 companies in the areas of health-tech, space, venture capital and education. He’s Co-founder and Vice-Chairman of two public companies, Celularity and Vaxxinity, plus being Co-founder & Chairman of Fountain Life, a fully-integrated platform delivering predictive, preventative, personalized and data-driven health. He also serves as Co-founder of BOLD Capital Partners, a venture fund with a half-billion dollars under management being invested in exponential technologies and longevity companies. Peter is a New York Times Bestselling author of four books, noted during our conversation and in the show notes of this episode. He has degrees in molecular genetics and aerospace engineering from MIT and holds an M.D. from Harvard Medical School.
Show links
- Peter Diamandis bio
- New XPRIZE Healthspan
- Peter Diamandis books
- 27 XPRIZE competitions and counting
- Life Force by Peter Diamandis and Tony Robbins
- Peter Diamandis Twitter
- Longevity Insider newsletter – AI identifies the news
- Peter Diamandis Longevity Handbook
- Hevolution funding for longevity
XPRIZE Founder Peter Diamandis speaks with Mehmoud Khan, CEO of Hevolution Foundation, at the launch of XPRIZE Healthspan.
Hevolution Foundation