Here is the complete interview questions and answers that appeared in Multisport.ph on January 22,2018 under the title “How This Mountaineer/Cyclist Defeated a Rare Genetic Disease” by Catherine Orda.
Can you tell us a bit about yourself? (age, where you work, typical schedule)
I am JP Anthony D. Cunada, a lawyer, mountaineer, biker, and writer. I am married to a poet, literary critic, and teacher who is about to come out with another collection of poetry, Rebecca T. Anonuevo. I work for my law office and I also serve as an Associate of Atty. Leonides S. Respicio who specializes in real estate and estate planning. Atty. Respicio’s Office is in Mandaluyong and my personal office is beside my house in Pasig City. I wake up and leave early to attend to hearings in other cities, and I stay up late to beat deadlines. During weekends when I have no deadlines to beat, I go biking. On Nov 1-6, for example, I and my friends from the Metropolitan Mountaineering Society went to Palawan to bike to El Nido. We usually climb mountains on weekends. When the climb takes more than a night on the mountain, like my comeback climb on December 15-18 in Kibungan traversing the three provinces of Benguet, Ilocos Sur, and La Union, I make sure that I have no hearings on Mondays.
2. When did you first experience symptoms of dystonia? Can you tell us about how that was like?
I first felt my right leg twitching. Eventually, my right leg moved from left to right-right to left such that it was embarrassing to commute and sit beside ladies who think I take advantage of their proximity to me by pushing my right leg against theirs. It was around 2015, I guess, when my right leg started twitching. In mid or late 2016, it was when my right leg started moving left to right-right to left on its own. In early 2017, I went to Dr. Roland Dominic Jamora who specializes in movement disorder for a check-up. He asked me to have a DNA test to confirm what was obvious. He also informed me that I have to consider brain surgery or Deep Brain Stimulation because he was almost sure my symptoms was that of dystonia.
3. What were the things you found most difficult to do after being diagnosed with dystonia? How did it affect your career?
The movement of my right leg I ignored. But since I knew that it was only a matter of time before I became inutile, I was so much in a hurry to climb the highest and most difficult mountains of our country. So, I climbed Mt. Halcon in Mindoro, and Mt. Guiting-Guiting in Romblon. I was about to climb Mt. Mantalingahan in Palawan but dystonia caught up with me.
I joined the Metropolitan Mountaineering Society as trainee for membership in January 2017. It was a six month training consisting of lectures and outdoor activities such as rappelling and of course mountain climbing. I survived my two minor climbs. The first one was in Mt. Daguldol, and the second in Mt. Iglit in Mindoro. I was not able to join my batchmates in our first major climb in Mt. Amuyao because my father-in-law died. But I was able to join our second major climb in Mt. Kalawitan. Mt. Kalawitan was going to be the last mountain I would climb until I had my brain surgery. When I went down from Mt. Kalawitan, my neck was very painful it was pulling my head to the right. I only reported to the office once and never came back after that because my neck was really very painful. When my neck muscles pull my head to the right, the pain was paralyzing I had to wait until it returns to normal angle before I can move again.
Meanwhile, I had to file a motion to withdraw from a court appointed case and refer a client to my high school classmate. Atty. Respicio had to find another lawyer as my substitute. As to my personal clients, they were somehow lucky because the hearings did not fall on the months that I was sick.
4. How did your family and friends respond to your condition?
My brother died of dystonia in 2014. My mother lost three brothers to dystonia before my brother. Although, everybody in the family knows about dystonia, nothing prepares you for the actual sight of a family member who is showing the symptoms. My tito, the only surviving brother of my mother cried when he visited and saw me and vowed to have me treated.
My friends from the Metropolitan Mountaineering Society were always there for me to lift my spirit up. Mau, our current Vice President always reminded me that we are mountaineers and mountaineers do not easily give up. Kapit lang. Kapit pa. He used to say. They visited me at home, attend gatherings, and did everything to make me feel that I am not alone. I returned this favor by writing them poems and by being loyal to the organization.
And they continue to be there for me even after my operation. My batchmates Abbie and Aldrin made me videos: first when I was diagnosed with dystonia. Second, when I was to be operated; third, when I announced my plan to bike from Pasig to my hometown, Pilar, Capiz; and fourth, the send-off video of the present and former officers and members of the organization when I left Pasig to Pilar, Capiz.
5. What did you do to cope with and treat your condition?
I wrote poems and I spend time with my friends from the Metropolitan Mountaineering Society. My condition is a genetic disease, I couldn’t do anything about it but accept it and work within the limits given by my body.
6. You’re an avid mountaineer and biker. How were these activities affected by dystonia?
It took me seven months since Mt. Kalawitan to be able to go back to climbing again. And mountain climbing is easier than biking because here, you only walk in the mountains and you interact with nature and people. While in biking, you deal with fellow bikers, motorcycles, tricycles, jeepneys, automobiles, and trucks. It’s more dangerous to bike than to hike. Dystonia limited my biking in a sense that when my medicines have no more effect, my neck stiffens. When this happens, I deal with the hardships of pedalling and the hardships caused by the stiffening of my neck. I deal with two things at the same time.
7. Did you find that living an active lifestyle actually helped you cope with your condition? What role/s do you think staying active played in your path to recovery?
Yes. Isn’t it boring to stay at home? Isn’t it great to hike and be with nature or to bike and bask yourself in the sights and sounds the streets have to offer?
8. Can you tell us a bit about how you biked all the way from Pasig to Capiz? What was that experience like?
I was only scared of one thing. That I would not be able to finish it. I have announced my intentions in an FB page (@dystoniaxdp) I created, and my intentions were to raise dystonia awareness and to raise money to buy three botox vials for three dystonia patients to relieve them of their suffering for three months, which is the effect of botox. What if I couldn’t make it home to Capiz? But the send off video of the current and former MMS Officers and members who are all bikers gave me fortitude. As Long Henson, one of the founding members of MMS said, it is not so much the skill. It is the determination that will make me finish the ride. And all of them in that send-off video didn’t show a hint of doubt that I could do it. They were all rooting for me. On January 7, as a demonstration of support, Mau, our current vice-president accompanied me biking from Pasig to Batangas, as he accompanied me in so many bike rides before. I crossed Batangas to Calapan and biked alone from Calapan port to Roxas Mindoro port. I stayed in Boracay from the afternoon of January 8 until morning of January 10 to attend a friend’s wedding. From Caticlan, I was accompanied by Alden Uriah who biked all the way from Kalibo to fetch me in Caticlan, and biked again with me back to Kalibo on the same day, together with Dandy Sejane of Aklan Wheelspinners. From Kalibo, I was accompanied by Alden and three other bikers: Pepito Lim, Roy Sibullas, and Richeleu Delos Reyes of Kalibo Pagjackers, to the border of Kalibo and Capiz. From the Capiz and Kalibo border, I was fetched by the members of the Capiz Cycling Club (CCC) complete with a bus with a tarpaulin on the nose of a truck, and some members of the press arranged with the help of our Governor Tony Del Rosario. CCC also arranged for the Kalibo bikers to accompany me from Caticlan to Aklan and Capiz border.
From the the moment I rode my bike from Pasig all my doubts were gone. So, I did it. I ended up collecting donations not for three but for eight (actually nine) botox vials.
9. You underwent brain surgery. What was your recovery process like?
I was very excited to get well. Perhaps, that helped a lot in my healing. A month after my brain surgery, Long and Mau were assembling my bike in my presence in Angono in the house of Long.
Before that, I biked to Antipolo. Then, I was biking to Timberland, to Tagaytay, in Palawan. When I had dystonia symptoms, I knew I was going to die. The brain surgery costs millions of pesos and I did not have that money. So, I knew I was going to die. But when my cousin Rap visited me at home and said to my wife that he had substantial amount for my operation, I was so happy, excited even that I asked my wife to shave my head the night after in preparation for my surgery that was to happen a month or so after. But this, I have not always told people. Before Rap, family, and friends came to help me, there were five relatives of mine abroad who, upon seeing my fb post about my sickness, immediately asked for details to send me money. They were my first responders. Their contribution was small for the overall expense of the operation, but large enough to make me know they care. And they made me very happy. So, thank you Jules, Grace, Girlie, Athena, and Nonoy Gene.
But this, I have not always told people. Before Rap, family, and friends came to help me, there were five relatives of mine abroad who, upon seeing my fb post about my sickness, immediately asked for details to send me money. They were my first responders. Their contribution was small for the overall expense of the operation, but large enough to make me know they care. And they made me very happy. So, thank you Jules, Grace, Girlie, Athena, and Nonoy Gene.
10. The public seems to be largely unaware of dystonia. What should a regular citizen know about it?
Dystonia is a genetic disease. Its “complete” name is X-Linked dystonia-parkinsonism or Lubag in Hiligaynon. Studies suggest that it comes from the island of Panay where I come from. Dystonia attacks at the prime of one’s life. The average onset age is 39. But the symptoms come out as early as 27 like my tito. Unless treated with at least botox or best with surgery, the involuntary movement takes over the person, and he becomes incapacitated. He could not do basic things such as eating or taking a bath alone. Symptoms vary. Mine was, my neck and head moved. Some, their tongue enlarges and elongates to their stomach. Because it comes from a little island, the number of people who are sick with dystonia are too little for a drug company to pay attention to and research for a cure. That’s why People have to know about this disease because awareness brings attention, attention brings curiosity, and curiosity will someday bring cure.
11. You mentioned in our text exchanges that maybe brain surgery shouldn’t be a treatment option. Why do you think so?
It was a misunderstanding. What I meant was, if we could not afford to help people get a brain surgery like mine, we could at least help them buy botox to relax their muscles and relieve them of their pain and suffering for three months.
12. You also mentioned that our politicians ought to do something about dystonia. What would you like to tell them about dystonia and its victims?
We have a Rare Disease Act that mandates the Department of Health to convene a Rare Disease Technical Working Group composed of experts from the National Institute of Health and other government agencies to list down rare diseases in the country, among others. When dystonia is listed as one of the rare diseases which it is, patients will receive Philhealth benefits. At present, my doctor said that dystonia is not listed as one of the rare diseases of the country. That’s why he is stressed because his patients do not enjoy Philhealth benefits such as packages enjoyed by others with diseases such as diabetes. Dystonia patients need all the help that we can get. We are all useful members of society before dystonia. I am a lawyer, some are seamen, others are doctors, and engineers. But just because we have this high falutin titles do not mean that we can all afford to have the brain operation, which is the best option right now if we want to continue to function as useful members of society. We did not want this disease. We did not choose this disease. Our politicians must come up with a solution if not to have us all operated, at least to help us alleviate the pain and suffering. Buy us botox, medicines, milk, or supplements.
13. Can you tell us about your campaign for dystonia awareness?
I want the world to know about dystonia because I want the world to help us. The only way the world will help us is when it knows that we are sick. That we have this genetic disease. Please help us. Fund studies about dystonia. Give money to Sunshine Care Foundation, Inc. from whom my brother AZ who died in 2014 benefited, and the only organization that caters solely to dystonia patients in Capiz.
14. What are your future plans (in terms of your campaign, pursuing other activities, etc.)?
I want to continue building the momentum I have started with my bike ride from Pasig to my hometown in Capiz. But I need suggestions on what to do. Perhaps you or your readers can help?
Finally, I believe it needs to be said: Governor Del Rosario, who has been helping dystonia patients even before he was a governor, arranged a welcome and a press conference upon my arrival in Roxas City on January 11, 2018 in Capiz Provincial Capitol. I was asked a question: should dystonia patients be prohibited or discouraged from procreating to stop the disease? My answer was no. Everybody deserves a shot at life. We rear children for the promise that they inspire. Who knows if the child we refuse to bear or rear would discover the cure someday? I wouldn’t have this advocacy and care for my fellow human beings if not for my dystonia.