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.

Ambi­tious indeed.

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.

Fac­toids:

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:

1. Fron­tiers in Vet­eri­nary Sci­ence, Canine Detec­tion of the Volatilome: A Review of Impli­ca­tions for Pathogen and Dis­ease Detection
2. Parkinson’s Dis­ease Foun­da­tion, Sta­tis­tics on Parkinson’s Disease
3. Sun­day Express, UK, Update March 2017
4. Wash­ing­ton Post.com/news/morning-mix/wp/2015/10/23/Scottish-woman-detects-a-musky-smell
5. PD Com­mu­ni­ty Blog, Fri­day, Octo­ber 30, 2015
6. 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.

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Categories: Animals, Health & Wellness, People
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