PADs for Parkinson’s
Lisa Holt, of San Juan Island Dog Training is working with a team of volunteers to train dogs to “sniff out” Parkinson’s Disease. They are the first to do this in the United States. It all began when news broke several years ago of a woman in Scotland, Joy Milne, who could “smell” Parkinson’s disease.
Nancy Jones, a former student of Lisa’s heard about that and took Lisa to lunch where they brainstormed the idea of dogs doing the same thing, and Parkinson’s Alert Dogs (PADs) was born.
Read the full story below for more. And be sure to click on the video above.
PADs for Parkinson’s.
by Lisa Holt –
Canine companions are a part of the fabric of life on San Juan Island, a fabric that is woven from the Island’s natural beauty, the combined and eclectic skillsets of the varied backgrounds of its inhabitants, and quite a lot of dog hair. A dog or two, or sometimes three of four, can be found in the homes, on the couches, and in the hearts of over half of the Island’s 7000 residents. Thirty percent of these dog-owning residents are over the age of 65, and likely to be retired. More than half of Island dog-owners have long since celebrated their 40th birthday. Here, we have people with time to dedicate to the care, exercise, and training of their dogs.
Lisa Holt, a certified dog trainer on the Island, has worked with many of these dogs and their owners for the past 10 years. In 2011, she became interested and enthused by the sport of detection training. The following year, she pursued and obtained her certification in K9 Nose Work detection from the National Association of Canine Scent Work. As part of her continuing education, she invested hundreds of off-island hours attending workshops and working her own dog under the tutelage of various professionally-acclaimed detection trainers, including Fred Helfers, Amy Herot, Ron Gaunt, Jill O’Brien, and Gail McCarthy. Lisa also worked in the field of Diabetes Alert Training and ADHD assistance dog training, and has now trained Island dogs for these specialized service and detection purposes. On the Island, she offers detection training for companion dogs, an activity known as K9 Nose Work, and has had over 100 Island students complete her detection training classes.
This brings us to the very start of PADs. One of Lisa’s many students was long-time Island resident, Nancy Jones, who, along with her husband, David Jones, took Lisa’s entry-level detection training class with their canine companion, Brenna. This was during the summer of 2015. Nancy worked Brenna in class while her husband, David, sat, watched and nodded at Brenna’s progress in Nose Work. David most certainly would have been working Brenna had it not been for Parkinson’s Disease. At that time, David had been struggling with Parkinson’s for over 15 years. This former mayor, fire fighter and naval officer was now someone who required assistance to simply get in and out of a chair.
Then, in October of 2015, the media released a piece of news that sparked the attention of the Parkinson’s community of researchers, caregivers, patients and their families. It was reported that a woman in Scotland, Joy Milne, could “smell” Parkinson’s. Joy Milne, a former nurse, said that people with Parkinson’s had a musty scent, and that she noticed this on her own husband, who was diagnosed with the disease. Researchers at the University of Edinburgh decided to test her with a series of 12 shirts, six of which were from Parkinson’s patients. Ms. Milne correctly identified the six shirts, and then a seventh shirt, as well. Months later, the owner of the seventh shirt was diagnosed with Parkinson’s. Why was this important news? Parkinson’s is a disease with no definitive diagnosis, especially in early stages. It is reported that of the 10 million people with Parkinson’s, about 20% of Parkinson’s patients are misdiagnosed. But that’s not all. If Parkinson’s could be detected a mere 5 years before the telltale signs of tremors and shakiness, a patient could potentially lead several decades of normal life. David Jones would have been working his dog in Lisa’s detection class.
Within days of the Joy Milne news release, Nancy Jones contacted Lisa Holt and invited her to lunch. The topic was all sniffer dogs and Parkinson’s. If a woman in Scotland could smell Parkinson’s, what could this mean in terms of dogs? Dogs possess an extraordinary sense of smell, with a demonstrated lower limit of detection at concentrations of one part per trillion, which is three orders of magnitude more sensitive than available laboratory testing instruments. Dogs can detect, associate and sort oderant molecules, or volatile organic compounds, in parts per million. Their olfactory system allows dogs to detect pathogens, cadavers, biological targets, narcotics, gases, elements, microbes, accelerant and explosive compounds, and many other odors, undetectable by humans.
The idea of testing dogs to see if they could sniff out Parkinson’s was exciting. But surely, someone else was already going down this path? It didn’t make sense to undertake a monumental research quest that had already been called and answered. Lisa tapped the detection community, Nancy reached out to the Parkinson’s community, and Google was extensively queried. In January of 2016, Lisa and Nancy had their answer. No one was working on training dogs to detect Parkinson’s. In early February, these two Island women, brought together by dogs and disease, partnered to start the first pilot project to determine whether dogs could detect Parkinson’s disease.
Eight of Lisa’s K9 Nose Work students stepped up and volunteered their highly-driven dogs for the project. A mobile home was saved from demolition and repurposed for the project. A biochemist and research scientist was recruited to help with research protocol. A medical physician was recruited to help with medical consultation. Volunteer scribes were enlisted to provide watchful documentation. Parkinson’s patients were contacted and enrolled as sample donors. Non-Parkinson’s donors were recruited to provide control samples. T-shirts, disposable gloves, and airtight stainless-steel canisters were purchased. Donor kits were assembled. Research tracking forms were printed. On March 10, 2016, the eight dogs, recruited for the project, stepped separately through the doors of the trailer to sniff their first round.
By May 11, 2016, six of the eight dogs remained in the study. These six were used for final testing. At this point, the Super Six had worked approximately 52 individual days, had sniffed over 200 rounds, and had been exposed on at least 800 times to Parkinson’s Disease, using 15 unique PD donors and 30 unique non-PD (control) donors. For final testing, the dogs would be introduced to three new, unique Parkinson’s Donors, and two additional Parkinson’s donors that were introduced very early in the study, during initial pairing. Pairing is a stage where the dogs’ primary reward is paired with the scent. At approximately 400 exposures, the primary reward was removed, and the dog is introduced to only the Parkinson’s scent.
At the completion of the final testing on May 19, the results were inspiring. On Canister Number 32 (PD Patient not on drugs) the dogs affirmed PD at the rate of 96% correct. On Canister Number 34 (PD Patient not on drugs) the dogs affirmed PD at the rate of 98% correct. On Canister Number 8B (PD Patient on drug) the dogs affirmed PD at the rate of 97% correct. On Canister 12C (PD Patient on drug) the dogs affirmed PD at the rate of 87%. On Canister 30 (PD Patient on drug) the dogs affirmed PD at 9%. Later on, we were informed that this patient (#30) was re-diagnosed with tremor disorder. These tests were independently conducted with all unique human controls in the room.
This was a high-five day for the study. The dogs had worked 3 completely unknown donors with unknown human controls and had correctly alerted. We called this stage Phase 1, because now, armed with results from Phase 1, we had Phase 2 firmly in our sights.
Phase 1 referred to a discovery period of whether dogs could detect Parkinson’s Disease. Phase 2 was planned with the goal of training dogs to detect Parkinson’s Disease, establishing training protocol for other trainers, and making our research findings available for other researchers to draw upon.
Phase 2 kicked off in September of 2016. PADs for Parkinson’s became a more formal organization. A 501C3 was filed and granted. More dogs were recruited for the program. A Board of Directors was formed. Grant requests were submitted. The trailer was secured as a training facility for a few more months. A hundred T-shirts and canisters were purchased. A brochure was printed. The media published results. We received requests from around the world from patients wanting the dogs to test their T-shirt. Parkinson’s Disease Support Groups were contacted for donor samples. Caring and giving Islanders sent checks. Some for $10. Some for $25. Some for hundreds. Paddle for Parkinson’s gave thousands, along with the Community Foundation and the CF Women’s Fund.
In early February of 2017, we introduced six new dogs to the program and retained three of our Stage 1 dogs for a total of nine dogs in the program. A critical component to the success of the program is maintaining a high number of dogs. For testing purposes, it’s important that as many as eight of every 10 dogs indicate a positive response to PD for solid research. Dogs are not entirely reliable as a single source, but as a group, the percentage of reliability increases by the numbers in the group.
In March of 2017, another piece of substantiating news came across the wire from across the Atlantic. The University of Edinburgh provided a follow-up on the Joy Milne story. The “smell,” was coming from shirts, most noticeably from the back and the neck area. The source, the researchers concluded, was sebum. Excreted by the sebaceous glands, this waxy, oily substance is made of triglycerides, wax esters, squalene, and metabolites of fat-producing cells. Chemists report that 9000 molecules make up a Sebum smear. For PADs, this was good news, because sebum is very much comprised of volatile organic compounds, and these oderant molecules are nicely trapped by cotton fabric. Since numerous research studies point to changes in the sebaceous glands in Parkinson’s patients, it was making sense that the dogs could identify a PD marker by sniffing sebum on the shirts. Based on this piece of information, we began using just the neck and back area of the shirts as samples for the dogs to sniff, thus reducing some of the “background noise,” or added molecular distraction for the dogs to sort.
Today, June 3, as this story is being written, the nine dogs in the program are showing us their evolutionary superiority in spades. The first year dogs (Phase 2) have now worked between 40 and 50 days, over 150 rounds, received more than 600 exposures, and worked more than 30 unique Parkinson’s Donor samples and the same number of controls. The second year dogs (started in Phase 1) have now worked more than 100 individual days, over 400 rounds, have more than 1500 exposures, and have worked more than 50 unique Parkinson’s Donor samples. As a collective group, (first and second year dogs together) the dogs have been between 80% and 96% for 10 of the last 11 days.
Looking ahead, our great hope and goal is to secure enough funding to provide a group of dogs suitable for testing people questioning or wondering about Parkinson’s. PADs maintains a list of these people, and the list is growing long. Too long. In May, we were asked to present the PADs Program to the Island Rotary Club, a group who asked thoughtful and insightful questions. We simply didn’t have time to call on all the hands going up in the room. However, in closing, I was quite struck by one of the questions, and I suspect it might be one of the Elephants in the Room…the question: “How do you plan to test for early diagnosis of Parkinson’s…are you going to do some sort of general screening of the entire population…however would you do that?”
Lovely question. There are five early warning signs. When you provide information on a medical intake form, you are asked to check off over a hundred symptoms that you may or may not experience. If you were to select or indicate the five symptoms related to PD, your physician may note this, but since there is no early detection screening tool, your physician is likely to simply be on the watch for more significant symptoms, and then if these appear, refer you to a neurologist. However, if PD could be suggested and treated at this early stage, then a patient could potentially lead as many as three decades of nearly normal lifestyle. This is the hope and promise that keeps us Padding Forward.
Today, every person who works in PADs is a volunteer. There are no paid people.
Counting donors, we have more than 100 volunteers in PADs.
Handler volunteers bring their dogs 4 days a week to training. Week after week.
Training is ongoing. There are breaks every 6-8 weeks, but this is a huge commitment for the handlers.
The dogs are all companion dogs. Our nine dogs are of the following breeds, golden retriever, border collie, Australian shepherd, vizsla, golden doodle, standard poodle, Labrador retriever, nova scotia duck-tolling retriever
The dogs range in age from 8 months to 12 years.
All dogs can do this kind of work. It depends primarily on the drive of the dog. Dogs with high drive and demonstrate and ability to work independently are more likely to work through the pressure and solve the problem.
Ultimately the dogs are searching a volatilome, (or scent signature) which represents a signature group of volatile molecules that need to be present for the dog to identify the marker. For example, in some forms of cancer, it is suspected that there are six separate molecules that the dogs are identifying to indicate a positive for cancer. For PD, this number remains an unknown.
60,000 Americans are diagnosed with PD each year. 90% are over the age of 50. Over 70% of PD patients are male.
References and notes:
- Frontiers in Veterinary Science, Canine Detection of the Volatilome: A Review of Implications for Pathogen and Disease Detection
- Parkinson’s Disease Foundation, Statistics on Parkinson’s Disease
- Sunday Express, UK, Update March 2017
- Washington Post.com/news/morning-mix/wp/2015/10/23/Scottish-woman-detects-a-musky-smell
- PD Community Blog, Friday, October 30, 2015
- PADs for Parkinson’s (Parkinson’s Alert Dogs for the purpose of early detection of Parkinson’s)
Board Members: Karin Agosta, President; Nancy Jones, Vice President; Katy Barsamian, Secretary; Carolyn Haugen, Treasurer
Lisa Holt, Program Direction, Certified Nose Work Instructor, Animal Behavior Certified Trainer, Animal Behavior Certified Mentor Trainer, Certified American Treibball Trainer
Key Volunteers: Suzanne Bryner, Associate Nose Work Instructor and Jean Donaldson, Junior Level student Academy for Dog Trainers
Alexander Swalling, Animal Behavior Certified Training Student, Dog Sitter
Dogs and Handlers:
- Birgit Kriete with Jess and Brinkley
- Judith Okulitch and Tim Kopet with Hudson
- Katy Barsamian with Ella
- Carolyn Haugen with Rowan
- Karin Agosta with Ajax (Handled by Karin, owned by Judy Chovan and Bob Stavers)
- Holly Harbers with Topper
- Ann Harris with Quil
- Barbara Wright with Mia
A big shout out to our many sample donors and monetary contributors.