Watch this exclusive interview with Jirome De Castro as he talks about his inspiring story despite having a condition called dystonia, a disorder that causes involuntary muscle spasms.
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00:00 Jerome, you're 47 years old now.
00:02 Tell us about your childhood.
00:05 So you studied in La Salle Green Hills.
00:08 Okay.
00:09 College, where?
00:10 Where did you take up your college?
00:13 I went to college in the College of St. Benil.
00:16 St. Benil, also in La Salle.
00:17 Yeah.
00:19 But how was it with the family?
00:22 Yeah, well, the family is very okay.
00:24 Because my parents are part of the community,
00:30 which is the Ligaya ng Panginoon.
00:32 Ah, okay.
00:34 Yeah, so we grew up with a fear of God.
00:38 Yeah.
00:40 As early as five years old,
00:42 we were taught how God is good.
00:44 How, you know.
00:45 Okay.
00:46 And we joined the children's formation.
00:48 And of course, when you're young,
00:51 there are times when you feel like He's baduy.
00:54 When you're growing up.
00:55 Oh, yeah.
00:56 So we didn't continue.
00:59 I didn't continue because, yeah,
01:03 I enjoyed my teenage life.
01:06 Oh.
01:08 But, um.
01:10 So let's say, it was a family that can afford
01:18 to send you to school.
01:20 You're not the type of family
01:21 that really needs to work hard,
01:25 that needs to go through hunger.
01:27 It's not like that.
01:29 Honestly, it's a discarded point of my dad.
01:34 My dad, actually, he already has a vision.
01:37 He always tells his friends,
01:43 his friends.
01:45 He wants us to be varsity players
01:49 or to be musicians.
01:52 But, um, to be scholars or something.
01:58 Now, my mom is a teacher in Lasal.
02:03 Oh, okay.
02:04 Ah, she's a teacher in Lasal.
02:06 Yes.
02:07 So that's what he shares as a blessing.
02:09 Our tuition fee is free.
02:13 Okay.
02:14 So, yeah, he always shares that with his friends
02:21 or my uncles.
02:24 It's a blessing that we were able to go to a good school.
02:29 Of course.
02:30 That's really a blessing.
02:32 But when did you first get into running?
02:37 Running was very recent, in 2014.
02:42 Because, actually, even before, I was already active.
02:49 I mean, when I was in high school, I was a varsity player in volleyball.
02:55 And then, even in college, I was a volleyball player.
03:00 And then, when I was already working,
03:04 I was fond of going to sports fests.
03:08 I became a badminton player.
03:09 I became sports-minded.
03:13 But this was really when I was young.
03:16 And then, of course, there's a mix of things.
03:18 I used to play guerrilla.
03:20 I used to play guerrilla hard.
03:22 And then, I drank.
03:23 Running was the only thing that changed my lifestyle.
03:29 So, in 2014, my wife wanted to run, to jog.
03:37 So, I tried it.
03:40 It was a different feeling.
03:43 I was really happy.
03:45 So, you carried this until now?
03:49 Yes.
03:50 Until now.
03:51 Yes, until now.
03:53 That's it. That's it.
03:54 That's the answer.
03:56 He said that when he started working, he started running.
04:01 Okay, let's go to two.
04:04 Sorry. I'm sorry.
04:07 I'm sorry, Jerome.
04:08 But there was an incident, an accident, Jerome.
04:15 Tell us about it.
04:17 So, that was the suspicion of why I got a dystonia.
04:23 Because I think I was like first year in high school.
04:28 Suddenly, the bus that I was riding got hit by a car.
04:34 It was a bus.
04:36 It was an L300.
04:38 So, all of our heads were flashing.
04:41 I was just sitting at home.
04:45 I really wanted to go home.
04:46 The Lord's joy came from the outing.
04:52 I was just sitting at home.
04:54 I wanted to go home.
04:56 Apparently, my colleagues went to the hospital.
05:00 You didn't?
05:01 I didn't go with them.
05:02 I went home.
05:03 I went home.
05:05 They all had neck braces because they saw something.
05:11 I didn't.
05:12 That was probably my mistake.
05:15 That's the culprit.
05:19 That's what the neurologists told me.
05:21 But since this condition is unknown, it's not confirmed yet.
05:29 But it can be the most probable reason why I got a dystonia.
05:36 But the symptoms did not come right away, Jerome?
05:41 No.
05:42 How old were you when you felt the symptoms?
05:49 When I was working at the bank, my head was moving.
05:59 I didn't feel any pain.
06:01 It was just a tic.
06:03 Tic.
06:04 So, it means that it was moving involuntarily.
06:08 It was moving.
06:09 It was moving.
06:10 You couldn't stop it?
06:12 I couldn't stop it.
06:14 My mom said that it was a mannerism.
06:17 So, you have to set your mind to be conscious of moving.
06:24 I couldn't really stop it.
06:26 You couldn't stop it from moving.
06:29 How did it move?
06:30 How did it move, Jerome?
06:32 It was moving like this.
06:34 Oh, just like that.
06:36 Okay.
06:37 And it comes anytime?
06:39 Anytime.
06:41 Anytime of the day, you were moving like this?
06:43 Yes.
06:44 Or all throughout the day?
06:45 All throughout the day.
06:46 Was it all throughout?
06:47 All throughout the day.
06:48 Oh, all throughout the day.
06:49 Okay.
06:50 It wasn't like Parkinson's.
06:55 It was like tremors.
06:57 For me, it was just moving back and forth.
06:59 Oh, moving back and forth.
07:01 But you didn't feel any pain, right?
07:03 No pain.
07:04 I didn't feel any pain at that time.
07:07 But wait.
07:08 Let's go to Geraldine, your wife.
07:12 How did you meet her?
07:14 Yes.
07:15 So, like I said, I mean, I wasn't active in Ligaya, but in the Church, in our parish, I became active.
07:28 I became president of an org there, which is the Catholic Youth Organization.
07:34 She became a member of our org.
07:39 And then we became close.
07:42 Then, eventually, we became girlfriends.
07:47 I was her first boyfriend until we got married.
07:52 You got married when you were young?
07:55 She was like, at the right age.
07:58 She was 17 years old when we became a couple.
08:02 Of course, I didn't realize it at first.
08:07 Now, I realize that I was a child when I became a girlfriend of my wife.
08:14 Because my daughter was 17 years old.
08:18 So, I was still young.
08:22 But wait. How old were you when you got married?
08:25 When you got married, how old were you?
08:27 Geraldine was 25, and I was 29.
08:32 That's a beautiful age.
08:34 That's a traditional age to get married for a guy.
08:41 But how old were you when your mother died?
08:45 I was around 35.
08:49 My father died first.
08:52 He died in 2004.
08:55 In 2005. My mother died in 2014.
09:00 In September, it was the same.
09:02 What did you miss the most about your mother?
09:06 Honestly, I didn't see anything bad about my mother.
09:15 She did everything I wanted.
09:21 I mean, defined spoiled.
09:24 She would do everything for me.
09:30 I mean, everything. I have nothing to say.
09:37 Honestly, one of my regrets right now is I took my parents for granted.
09:45 Especially my mom.
09:46 Because, well, that's how it is.
09:49 I mean, sometimes when a person is gone, you realize that.
09:55 And up to the last breath, I mean, I regret not being affectionate.
10:08 I don't say I love her to her that often.
10:12 I know she deserves to hear that every day from me.
10:20 But I didn't do it.
10:22 So what I miss is her being affectionate to us.
10:28 I mean, no one can say that she was a bad parent.
10:34 It's so nice to hear that from a son.
10:38 If I were your mom, wow, my son would be flying in my ear.
10:43 Jerome, tell us what happened in a funeral.
10:48 What did your family members notice about you in a funeral you attended?
10:57 Actually, it was a first communion.
11:04 It was my son's first communion.
11:06 Ah, okay, I'm sorry.
11:08 So that was the first communion of your son?
11:10 Yeah, yeah.
11:11 My daughter.
11:13 Oh, your daughter.
11:14 Then, they took a picture.
11:18 Obviously, when it's the first communion, they take a family picture.
11:21 I was surprised.
11:24 Usually, the son is in the middle.
11:30 I was surprised that I was on the left side of my son.
11:36 Usually, you should be close to him.
11:38 I couldn't be close to him because I was far away.
11:41 I was surprised by that.
11:44 So that's when I noticed.
11:47 Then, right after, someone noticed, "Are you a stiff neck?"
11:51 Oh, ah.
11:53 So I was wondering what's wrong.
11:57 My neck wasn't moving anymore but it was getting stiff.
12:02 After several consultations with doctors, what was the diagnosis?
12:11 At first, it wasn't correct, right, Jerome?
12:15 What was the first misdiagnosis?
12:19 At first, I thought it was Tourette's Syndrome because my neck was twisted.
12:27 Well, it wasn't ruled out but I was observed.
12:40 But I didn't go back.
12:42 Then, what happened was when my neck started to hurt, a few years after,
12:49 I was wondering what was wrong because it was getting stiff.
12:53 I googled what's neck tilting towards one side,
13:01 it says dystonia but of course, you have to hear from an expert or from the professional.
13:11 So I went to an orthopedic and got a CT scan.
13:16 They said it was cervical spondylosis because there were some things I saw on my neck.
13:22 I was even looked into.
13:26 But the PT doctor I talked to, I mentioned it too.
13:35 Because sometimes it's hard to suggest to a doctor, right?
13:38 I mean you have to believe what the doctor is saying.
13:41 But the PT doctor said to me, "Do you have any relatives in the family?"
13:53 I said, "No, I don't have any relatives."
13:56 It's because of XDP.
13:59 That's a different, but usually that's what they ask for dystonia.
14:04 Really?
14:05 Yeah.
14:06 What does Panay have to do with it?
14:08 I'm sorry, Jerome.
14:10 What does Panay have to do with it?
14:12 Panay Islands, you're talking of the province?
14:14 Yes, exactly.
14:16 Because the roots of XDP, the carrier is the mother.
14:25 She's a gene.
14:27 The mother passes to the male offspring.
14:32 Most of the XDP patients, the mother is the carrier.
14:40 So, yeah.
14:45 So, it's like you said, there's a genetic thing, is that right?
14:51 XDP is really genetic.
14:55 Oh, it's really genetic.
14:57 But dystonia, wait a minute.
15:01 Is the final diagnosis for you, what is it?
15:05 For me, it's cervical dystonia.
15:09 Just in the neck.
15:10 Cervical dystonia.
15:12 Dystonia in the neck.
15:14 What kind of medicine is that?
15:17 Temporary treatments, botox injections.
15:22 If I can afford it because it's in the Philippines, you have to pay for it.
15:29 So, it should be every three months.
15:33 But sometimes I take it once a year or six months because it's expensive.
15:40 It's not covered by the money.
15:44 So, I'm trying to bear with it.
15:50 I'd rather spend it on my daughter's tuition fee.
15:54 Of course, that's your only parent.
15:57 Aside from the pain, what else changed in your personality, in your outlook on life?
16:07 Share it with us, Jerome.
16:10 Yeah, so before this happened, I was a very sad person.
16:16 I can say that I was the joker of our group.
16:23 I was always laughing.
16:27 So, that gradually disappeared.
16:30 Oh, really?
16:31 Because it became negative.
16:37 And then slowly, anxiety was attacking me.
16:42 So, I was being eaten by my anxiety. I wanted to understand people.
16:53 I wanted to...
16:59 I was looking for a lot of things.
17:03 I experienced pain every day until such time that people around me didn't know how to deal with it.
17:13 Because they were also having a hard time.
17:16 You used to be close to God, right?
17:19 Did that change?
17:22 Of course.
17:23 Go ahead.
17:24 Of course, I mean, yeah.
17:27 I tried not to question the Lord, but of course, my conversation with the Lord is like a friend.
17:42 So, sometimes I get angry, of course.
17:47 But sometimes I ask, "Why me?"
17:52 But the Lord will tell me, "Why not?"
17:57 So, I don't know. It's part of the process.
18:05 That's my next question.
18:08 Because in our brief conversation, it's not like that.
18:16 I think you're one of the guys. There's really nothing wrong with you.
18:23 If you ask me.
18:24 So, how did you overcome those trials?
18:29 Was Geraldine a part of that?
18:33 Was she part of it?
18:34 Of course.
18:35 Because she's the one who watches over me.
18:45 I post a lot on Facebook.
18:47 That's my outfit.
18:51 So, when I'm in pain, people see that I'm in pain.
19:05 But I'm used to being complained about.
19:10 I don't see anything good anymore.
19:12 But of course, I still post about the good things in my life.
19:17 But every day, I'm in pain.
19:21 Because that's what you feel.
19:23 That's what I feel every day.
19:26 Even if I'm running, which is an achievement, supposedly.
19:33 Not everyone can do that.
19:36 But my wife, when she sees me suffering,
19:44 your children are watching you.
19:50 And you have to be an example.
19:53 So, she watches over me.
19:57 I mean, I listen to my wife.
19:59 She's the one who becomes my eyes on my journey.
20:10 She has always supported me throughout this journey.
20:21 Of course, she'll be mad at me.
20:23 But it's natural.
20:29 Because when I say that I'm in pain,
20:38 I think I shared this also that I posted about something about suicide.
20:43 Oh, so you reached that point.
20:49 You entertained the idea.
20:52 What brought you back to the life of truth?
20:58 How do you go back to your good self?
21:06 When you think about everything negative, doomsday,
21:12 how do you go back to that?
21:17 Before, it was like a spiral of depression.
21:22 It was hard to leave.
21:24 It was hard?
21:26 It was really hard.
21:28 When I entered the anxiety, I don't want to call it.
21:33 How did you overcome all that you went through?
21:38 What you call your journey.
21:41 I would call it a struggle.
21:43 I would call it a difficult journey.
21:47 Your anxiety, getting over your anxiety.
21:50 On a scale of up to 10, where were you when you were overcoming this anxiety?
21:56 I can say it's between 8 to 9.
22:03 I'm in a better position now.
22:08 Geraldine is one of those who really supports you.
22:16 She's also one of those who blesses you.
22:21 She doesn't give up on you.
22:23 Of course.
22:24 If your wife is weak in what you do, it's hard for her.
22:30 But she's still there.
22:32 She's still there.
22:34 She's strong.
22:35 I have co-patients who come to me.
22:41 They have their struggles.
22:43 It's a study that the partner should always be very supportive.
22:51 I didn't ask for this from my wife.
22:55 It's a blessing that my wife has always been there for me.
23:01 She's helped me in my recovery.
23:05 She's my wife's support.
23:07 You even raised funds for people with dystonia?
23:15 How did you do that?
23:17 What was that?
23:18 Why did you go there?
23:20 For some reason, I was compelled to help.
23:25 I met these people.
23:27 I met people with XDP.
23:29 I wanted to know if there were people with this kind of illness.
23:37 I found out that it's a worse condition.
23:41 I don't want to say blessed, but I felt that someone has to represent them.
23:48 Because when we talked, they talked.
23:53 It's really hard because my neck hurts.
23:56 It hurts so much that I can't feel my whole body.
23:59 Oh, your whole body.
24:01 So, I decided, I don't know, but probably the Lord said that...
24:12 Don't complain.
24:13 I just helped.
24:16 You just helped, don't complain.
24:18 Oh, you're also involved, Jerome, with the Dystonia Medical Research Foundation?
24:24 Yes.
24:26 What is that foundation?
24:28 In Canada, there are many patients with dystonia.
24:36 Of course, what is needed in rare diseases and rare conditions is research.
24:48 Research, yes.
24:50 So, I was surprised that they got me as an ambassador in their campaign.
25:01 It's a running event to raise funds as well in the whole of Canada.
25:05 So, I've been here in Canada for just one year.
25:11 They recognized that it motivates people who have conditions like mine to move.
25:23 Because one of the recommendations of the neurologists is that you have to keep on moving.
25:31 You have to keep on moving or be active.
25:35 I believe that running helped me manage my symptoms.
25:44 Because there was a time that I stopped running because I thought that would be the solution.
25:51 My condition got worse.
25:55 Jerome, what can you share to people who have diseases or disabilities or problems in their lives?
26:11 What can you share to give them inspiration, to motivate them, to share with them?
26:20 How did you reach from 1 to 10? You were already 8 or 9 when you reached that.
26:25 It's almost there. You're almost there.
26:27 Your anxiety is gone.
26:29 Go ahead, Jerome.
26:31 So, I believe God is good.
26:37 But God is good even in challenging times.
26:42 We keep on saying God is good when good things happen to us.
26:46 But we have to claim that God is good even during challenging times.
26:51 Because the Lord knows everything. He knows our plans.
26:57 We just have to give the Lord a chance.
27:01 So, let's not give up.
27:04 Let's give the Lord our path. He will give it to us.
27:13 Let's just accept whatever struggles we face.
27:17 And honestly, without these struggles that happened to me, I don't think I would survive my life here in Canada.
27:26 Because I think the pain that the Lord gave me now, honestly, I can't believe that I can do three jobs even if my leg hurts.
27:39 I'm surprised.
27:41 So, it's a preparation for my life here.
27:46 All my struggles before is a preparation for my new life here.
27:52 And I believe that we all have plans. The Lord is good to us.
27:58 So, just believe. Just cling to the Lord like a leech.
28:03 That's what the Lord taught me here.
28:06 Give the Lord a chance.
28:11 Thank you so much, Jerome, for sharing with us.
28:15 It's so interesting now speaking with you.
28:19 It's so uplifting even for me listening to what you said about how you went through the trials of the Lord.
28:32 I really believe in what you said.
28:35 At the end, we will hold on to the Lord and ask for a solution to all our experiences.
28:48 God bless you and your family, Jerome.
28:51 Thank you, Tita.
28:52 Thank you very, very much.
28:54 God bless you, too.
28:56 Salamat.
29:11 Okay. Thank you, Jerome. Salamat.
29:14 Thank you.
29:15 That was a very nice interview. Thank you so much.
29:18 Say hello to Geraldine for me.
29:22 Okay.
29:23 Say, "I believe in Him."
29:26 "I believe in Him."
29:28 You have been blessed by the Lord already.
29:32 And that's another good thing.
29:35 Listen to me. If you learn to see your blessings more.
29:43 Instead of the struggles.
29:45 Yes, instead of the struggle.
29:46 It's easier to follow.
29:49 That's true.
29:50 Like your blessings, your wife's, your children's.
29:54 You have a lot of blessings.
29:56 Even though I don't know you that well, I've seen a lot of blessings.
29:59 That's true.
30:02 Thank you so much.
30:03 Go to sleep now.
30:04 You might not be able to eat yet.
30:06 Okay.
30:07 Have you had dinner?
30:08 Okay. Thank you.
30:10 Thank you, Tita.
30:12 You're so welcome. Thank you so much.
30:14 Bye-bye.