Next Stop: Mexico

Since returning to UCSD, organic chemistry finals and late night study sessions at biomed, we have founded a student organization at UCSD: Phantom Outreach. We are also currently working with the Cure Our Children Foundation and the Amputee Coalition to post instructional videos of how to do mirror box therapy on their websites to further raise awareness in the amputee community throughout the States.

We plan on taking mirror therapy to Mexico next and in this effort we have partnered with several healthcare providers in Mexico and are working to schedule a traveling lecture series. These trips are scheduled to begin in January 2012. In June 2012, we will be returning to Haiti to further spread knowledge of the therapy in Port-au-Prince, as well as introducing it to physical therapy clinics throughout the Dominican Republic and Nicaragua.

-Liz

Haiti is roosters crowing at dawn, drums in the night, coffee plucked wild from mountainsides, and rum from ancient iron kettles

Sunday brings us to our last full day at the hospital. It is a day full of mixed feelings as I wish to stay much longer. We spend much of the time ensuring everything is set with both the Hanger Clinic and physical therapy clinic at the hospital so that the therapy may continue once we have left. We leave the duffel bag full of sneakers Brittany and Lina brought with the Hanger Clinic and the donated medical supplies to the hospital.

A newly arrived surgeon from explains to me that he has a patient back in New York with severe phantom pain and I teach him the mirror box therapy so that his patient may be helped when he returns.

As we bid our many new friends Au Revoir tonight we hope to return very soon. Haiti has an incredibly complex history with foreigners (“blancs”) to say the least yet I've never felt so welcomed. Locals come up to me freely and take me on tours of their schools, to the markets underneath tarps and past labyrinths of vendors. There is beautiful art everywhere one goes. Asking someone here what their art is would be comparable to asking someone what their favorite color is back in the States: everyone has one. On the same day, I walk through the open corridors of the hospital with dozens of patient beds crowded together (those with tuberculosis and other infectious diseases abreast those without), past the malnutrition ward, and relief tents housing the overflow of cholera patients. These conditions further my commitment to help others through medicine. Being in the minority here has taught me to view the world from a different perspective, as well as deepened my knowledge and appreciation of sustainable philanthropy.

Organizing and leading this research project involved complex logistics for travel, safe accommodation, recruitment of patients, and experimental design. The footprint was left for the scaling and on-going practical implementation of this inexpensive and non-intrusive therapy. This trip is an extension of my career goal of not only using research as a tool to develop simple yet effective treatments for neurological disorders, but bringing them directly to the (phantom) hands of those that need them.

-Liz

To the Holy Trees!

Saturday we are early to rise at 4 a.m. As we meet our new friend Orlsy who has offered to take us on a hike up the mountains to the Holy Trees. ( The steep trek up the mountain isn't a simple one after having fueled myself with several cups of coffee to wake up rather than water. Orlsy teases me, “Fatigue?!” “Pas Fatigue!” I reply ) We see the sun rise over mountains beyond mountains. Under the holy trees, women and men of all ages sing beautiful hymns, an enchanting backdrop to the sunrise.

We venture back down the mountain, and have a quick breakfast. As a thank you for bringing the supplies, Orlsy has invited us to the school. Back up the mountain we go, this time not quite so far. The children greet us with song and clap as we enter. They show off their English for us and their knowledge of American geography. A cultural and language exchange takes place: they teach us some Haitian Creole and we teach them some English. When we ask them what they would like to know how to say in English, they tell us, “Please teach us how to say: Can you come back every Saturday?” I am moved to tears and deeply wish I could.

We have brought some T-shirts which they hand paint for us, excellent keepsakes of our time here. We speak to them about how much we have loved Haiti and wish to return very, very soon.

After lunch back at the Alumni House where we are staying, Lina and Brittany get a tour of the pediatric ward. I meet with local artists and give them copies of my father's books on optical illusions. I thought it might be interesting to introduce them to visual illusions, something they may never have seen before. (When I see the artists later that day, they walk with books in hand and I notice that they have bookmarked most of the pages – who knows, next time we return to Haiti, one may see the art has been influenced by such masters of deception as Magrite, Escher or Salvador Dali!)

-Liz

Presentations, presentations, presentations!

Friday is full of presentations. Our first presentation is at the hospital's morning meeting and is for the medical staff and medical director. I begin the presentation in English, with Nicole offering a French translation. Our presentation is met with much success and we receive many thanks for having brought this therapy – that it's ease of use and simplicity makes it well suited for the region. They are extremely appreciative for the mirrors and invite Nicole and I to attend rounds. Rounds is incredibly interesting. The role of nurses in the States is far different from that in Haiti. I witness several arguments between doctors and nurses when the doctor instructs the nurse to assist them. The nurses in Haiti have an incredibly strong union and, since they can't easily be fired, often hang out by the water cooler instead of assisting patients. I offer this information not to pass judgment, but to open the problem up for solutions. This is a big problem for the hospital and they are open to suggestions.

Probably the most difficult moment of the entire trip for me was during rounds when we learned that pain medicine is in short supply in Haiti and patients are often treated without it, especially children. One young girl had an elbow fracture that had become infected and thus the doctors had begun to remove muscles from her arm to prevent the infection from spreading further. Having experienced chronic myofascial pain throughout my adolescence, seeing someone else in such pain without relief was incredibly difficult. The best we could do was sit with her, comfort her, and try to distract her until the doctors were finished.

After rounds finish, Claude and I figure out how to divide the mirrors we have brought for both the Hanger Clinic and the physical therapy clinic at the hospital. Nicole, Lina, Brittany and I first bring these mirrors to the physical therapy clinic. I am incredibly excited to see upon entering the physical therapy clinic that they are already doing the therapy. This is incredibly moving and assures me that the therapy will continue after we have left. We leave the mirrors and speak with several of the physical therapy students. They tell us all about what they've learned from mirror box therapy and, again, ask many intelligent questions. They are eager to learn more and we exchange contact information. Any of these bright students would be an excellent addition to weekly lab meetings back home!

Claude and I then bring the rest of the divided mirrors to the Hanger Clinic and present to their staff. The physical therapists and prosthetics are eager to learn more and I thus teach them many other tactile illusions, including the rubber hand illusion (http://www.scientificamerican.com/article.cfm?id=the-third-hand-illusion) and how to scratch a phantom itch (Seckel, E., Rogers-Ramachandran, D.,Ramachandran, V.S. (November, 2011) Scratching a real itch with an illusory scratch. Society for Neuroscience.)

We leave the Hanger Clinic with a copy of Dr. V.S. Ramachandran's latest book, Tell Tale Brain, so they may continue expanding their knowledge of the field.

Tonight Orlsy, who is a famous local artist and now teaches art to the local homeless orphans after the earthquake, picks up the duffle bags Lina and Brittany have brought that are overflowing with art and school supplies. He teaches us it is best to bring the supplies in to the school slowly, that way one avoids a mad rush and fighting. He will keep the supplies safe at his house. (Nicholas has previously told us that Olcy is incredibly trustworthy and the best person to handle the supply distribution at the school.) (Image on right is of our new dear friend Olcy at this art studio in Deschapelles.

-Liz

Everyone suddenly has a mirror

Thursdays brings a bus from Port au Prince full of patients needing fittings for their prosthetics and our busiest day yet. After seeing several patients, we notice that many more individuals are walking around with mirrors. What has happened is a common occurrence in the region (or anywhere aid is being given out): patients saw other individuals receiving mirrors and, wanting them, took them. I pass no judgment, as I would do the same thing in this situation. At this point, we realized individuals knew we were giving away something of value and stop recording data as it would be extremely biased with patients saying what they think they need to say in order to please us and receive a mirror. We had always been extremely careful in not telling patients they would be receiving the mirror until the very end of the session as to bias them as little as possible.

We speak with the physical therapists at the Hanger Clinic, asking if there is a better way we could give out the mirrors: in the future, should we wait until the end of the day to give out any mirrors? They tell us it wouldn't make a difference and they encounter this difficulty all the time. When a patient receives sneakers along with their new prosthetic so they may wear the prosthetic, the other patients want sneakers, too. When a patient receives socks, all the other patients come up to them, asking why they didn't get socks.

Tonight Nicole and I prepare our powerpoint presentation for the hospital staff and medical director. I include information regarding sensory referral (amputees with phantom pain may massage the residual limb and also feel relief in the phantom) so that, when the mirrors we have brought run out, the therapy may continue after we have left.

-Liz

The 365 Doors Palace

We see many patients, most notably a patient that experiences extremely debilitating phantom pain and often episodes of severe pain are as frequent as five minutes apart. His phantom foot was clenched in a very painful position. We introduced him to the mirror, where he was able to slowly unclench his phantom, immediately reducing his pain. It is amazing to see the “aha!” moments experienced by the patients in which the mirror therapy clicks and they begin playing with the mirror— tapping their intact limb and grinning when they feel the tap in the phantom.

After a morning full of mirror box therapy, we explore Ti rivière with our new friend and ex-patriot Nicholas. He brings us to pottery studios, art galleries,and furniture and wood carvers. We travel to the Artibonite region of Haiti about two and a half hours from the capital Port-au-Prince. Petite-Rivière de l'Artibonite bears enormous touristic potentialities beside its incredible landscape and historical monuments. Symbolizing a glorious past, the 365 Doors Palace still remains the pride of Petite-Rivière residents despite its deterioration.

Further up above one of the Cahos' hillocks stands the Crete-a-Pierrot fort that still dominates the Artibonite plain and river. Built by liberated slaves, renovated by the British during their stay in the region, then quickly transformed into Citadel by Jean-Jacques Dessalines, the Crete-a-Pierrot fort has been the setting in March 1802 of one of the bloodiest battles that led later to the independence of Haiti.

Nicholas is an excellent tour guide, having spent a majority of his days over the past decade at the Albert Schweitzer Hospital. He is a true inspiration and asset to the region. He also manages a local musical group, Prestige. Their music and more about Nicholas' philanthropic pursuits can be found at Nicholas' blog:

http://pcaphaiti.wordpress.com/

While walking through the town, Nicholas points out several murals that he and his art students have painted. The murals tell the story of the town, how the community has come together since the earthquake and how the inhabitants imagine the town could be rebuilt. Higher up in our view we pass several billboards with advertisements showing how to wash your hands with soap and water to prevent cholera. To return to the hospital campus, we elect to travel via motorcycle taxi. We soon arrive at a river where we must take a boat across as there hasn't been enough funding or support to build a bridge. This is quite unfortunate as a bridge here could help expedite the town's activities and progress tenfold.

Back on our motorcycle taxis, we head towards the HAS campus. Claude and I take a quick spill, Claude nearly dislocates his knee and I burn my leg on the exhaust pipe. After a quick rest and recovery at the Melon's house, Nick brings us to the hospital's botanical garden. We are introduced to the sweet taste of cocoa pods (it is the seeds from this fruit that chocolate is made). The pods are filled with savory pulp (called 'baba de cacao' in South America) enclosing 30 to 50 large seeds that are fairly soft and white to pale lavender in color.

Nicole, Claude and I then travel to the physical therapy clinic at the hospital, where we give several powerpoint presentations to the physical therapy students on how to do mirror box therapy with their patients. The students are incredibly impressive, asking many intelligent questions.

As two members of the team (Lina and Brittany) elected to arrive in Haiti further into the trip, Nicole, Claude and I worked for the past several days with the local community to assemble a list of what donated supplies would be most helpful for the region: do they need sneakers, notebooks, pens, tools? Turns out, all of the above. We work with friends and family back home to assemble several large duffle bags full of everything from art supplies to sneakers, soap to prenatal vitamins. The two other members of our team (Lina Delbruck and Brittany Lyng), with donated supplies, arrive at the HAS campus late this Wednesday evening. ( An exciting introduction to the region, Brittany and Lina were delayed in Port-au-Prince due to a road block created from protests over electricity. ) After a brief meal, Nicole, Claude and I take them to the corner bar and local meet up spot “Kimmelem” (which roughly translates to “I don't care – don't worry about it”) and introduce them to the local customs. After some dancing and a trip home via local motorcycle transportation we let them get some much needed rest.

-Liz

My veins are pulsing!

We will soon be presenting mirror box therapy to the physical therapists as well as other hospital staff so that patients can continue to be treated long after we have gone. There is a problem in the region of worsening conditions after donations or money runs out so we have been brainstorming how the mirror box therapy can continue after the mirrors that we have brought have all been given out. This could involve utilizing sensory referral - massaging the residual limb, watching someone else's limb be massaged and massaging the ipsilateral face for upper limb amputees.

Another factor that must be considered is evolving materials for best use in Haiti. For example, many of the wheel chairs sent to Haiti patients can't use because the tires aren't strong enough for the roads here. The best tires for the wheelchairs are tires for rough terrain like those on a mountain bike. We believe that by utilizing the durable, shatterproof acrylic mirror sheets rather than glass, our materials are well suited for the environmental challenges of the region.

We've learned that after the earthquake the clinic was extremely busy and people were working 12 hour days to make enough prosthetic limbs. This clinic was the busiest and biggest physical therapy and rehabilitation clinic after the quake: 27-30 patients/ day were fitted with prosthetics and treated in the period of time after the earthquake.

There appears to be a high incidence of phantom sensations in Haiti. This may be due to the nature of the amputation (many of the patients' limbs were in great pain before the amputation due to being caught under fallen rubble and during the operation as anesthetics weren't available). We have had no problems in describing what a phantom sensation is to the amputee community here: every patient thus far has immediately known what we are talking about. The patients have been very willing to try the therapy and are incredibly relieved— overjoyed to feel pain alleviation in their phantom. Many patients continue to tell us they will show all their friends with phantom sensations and phantom pain the therapy. This is probably one of the best ways to spread word of the therapy beyond our clinic.

A new phenomenon we have noticed is that when many patients are in front of the mirror and feeling their phantoms move for the first time, they report they “feel their veins pulsing.” We've never heard this description used in the States—we are researching if this expression means something different in Haitian Creole than the direct translation.

-Phantom Outreach

Roasting coffee in the mountains and riding in a tap-tap

On Friday after the morning hospital staff meeting, we head to the Hospital Albert Schweitzer's (HAS) PT clinic to speak with Verna, a young PT who hosts a local radio show La Familia each Saturday (similar in style and variety to NPR). We ask him about the prevalence of phantom pain in his patients and about the local nomenclature. He replied that numerous patients have complained of such pain. We also discover “phantom” is the commonly used term. We craft our ad that Verna will present for us on his show asking patients with painful phantom limbs to come for free mirror therapy services at Klinik Hanger. We describe our non-invasive therapy and Verna promises not only to present our information on La Famili but to teach his friends from other areas and share the news with other radio shows as well.

We begin the next day with a more in-depth tour of the hospital and meet several physicians working there. They are supportive of our project and let us know of other amputees staying in the hospital. They also invite us to shadow them and observe surgeries. We hope to fit some time in to do this as it would be a great experience-- there is so much to learn here!

On a break from our responsibilities at the Hospital and clinic, we visit the home of Stephan who shows us the fresh green coffee beans and roasts them for us on a small charcoal grill. We are introduced to his young daughters ages 10 and 6 and even shown their report cards. We ask to see their school later. Meanwhile as the coffee roasts Liz and Nicole have their hair examined and braided by the curious girls. Later we notice the infected toenail of the youngest and their lack of closed toed shoes. We take note to speak with some of the pediatricians we know. and email our colleagues in the US to bring a few extra pairs of shoes when they arrive.

On Sunday we are introduced to the surrounding area by locals with other volunteers at the hospital. We take a tap-tap, the local transportation. Tap-taps are old pick up trucks where people squeeze in the bed of the truck. Its common to see tap-taps with thirty or more people hanging on. On the drive, I notice several non-profit microcredit loan stations. Its pleasing to see that microcredit is available. Something else of note is that all the little stands labeled banks are actually lottery game stands – pas des banques!

In which we spread the word of mirror box therapy

Of all the places we have traveled we have never met people as welcoming and as kind as the ones we have met in Deschapelles. Although we have only been in Haiti just a few days the adventures we have had are numerous. After seeing many patients at the Hanger Clinic on Thursday we took a trip to the local market with a paintings vendor, self-appointed as our guide, who took us beneath tarps and around the maze of shops. Stephan, our guide, then took us to exchange USD into Goudes the local Haitian currency. Next our trip to the barber called Nice Barbershop for Claude, who received about four hair cuts each of which got shorter and shorter until the barber had nothing left to cut. Outside the 6' X 6' barbershop Liz and Nicole sat chatting with the locals. When our guide asks if we know about Haitian coffee, ears perk up. He says he can procure some fresh coffee beans from a woman up in the mountains. He'll roast it himself. We ask if we can watch – “bien sur!” It's raining now heavily and we are walking down the unpaved road to the hospital, walking with new friends— it's only our first full day.

Arrival in Haiti

Dear friends and families,

We have arrived safe and sound in Haiti! We got to PaP airport at noon and arrived at the hospital (HAS) just after sunset. Immediately we were welcomed by our fellow volunteers who are all very kind. Many of the locals who work at the hospital took us out last night for an annual end of summer festival. So far we've had a wonderful time drinking Prestige the Haitian beer and dancing with friends. Today we woke up early for the daily meeting where physicians discuss the most interesting cases of the last 24 hrs and give presentations. After tour of the hospital and the cholera ward we got settled in the Hangar clinic where physical therapy and prosthetics are located and also where we will be working from. Our first patient, a young woman spoke French so we were able to communicate without a translator. Her phantom pain is intermittent and she took immediately to the mirror! Our first patient and first success.

More to come soon,

-Phantom Outreach

Florida to Haiti

Liz, Claude, and Nicole are in Florida preparing for the flight in to Port-au-Prince later this morning.In the parking lot of a Vegas CVS We Tetrised our bags such that all the mirrors fit and nothing had to be abandoned! A small roadblock when a tattered passport bothered an attendant at the front desk of the airline was resolved with persistance and politeness.Now we are sipping coffee and reading our new copy of Lonely Planet's guide to the DR and to Haiti which has just been updated post-quake in its 5th edition and is not yet available in print (you will have to wait until October for the book)but can be purchased by chapter as a pdf on their site.The chapters on Haiti are informative and upbeat. We look forward to immersing ourselves in this vibrant and complex culture.
It is not clear when we will have internet access so hang tight for our next update- our first of many from Haiti.
A plus tard!
-Phantom Outreach

Au Revoir!

We are trying to get our bags as light as possible to fit 200 mirrors which is proving difficult. After that it's off to Las Vegas where the first members of our group will meet to fly to Port-au-Prince. Our second group will be joining us in a week. Currently we have a member in San Diego who is collecting donations we can bring to the women's shelter in PaP. Information about the shelter founded by founded by Eve Ensler can be found at: http://www.vday.org/our-work/safe-houses/haiti . Please contact us through this blog to arrange donations. We need contraceptives, feminine items, pregnancy tests, prenatal vitamins and letters of support.
Merci beaucoup,
Phantom Outreach

Welcome to our new site.  We are headed to Haiti tomorrow— check this site often for updates and feel free to comment below. We look forward to hearing from you.
-UCSD Phantom Outreach