Running low, then dead

Wow! It’s been two months since my last post. Sorry for the MIA (missing in action) guys. Been busy finishing my last semester in Med School. This step has almost ended. But enough about me. Let’s do a summary of what has been going on my hubby. First of all, due to multiple visits to the ER because of  excrutianting pain, hubby’s last one included a surprise. Before the ambulance arrived at our home that night, we did a routine checkup of his DBS batteries to see if any of them were off. The one on the left side wasn’t responding to the remote control. After a few hours and more than a dozen tries, a Medtronic representative came to check the system. X-rays were performed to assure than none of the cables were broken or misplaced. To our surprise, all the x-rays came back normal. Once she tried to turn on the battery, she noticed it wasn’t responding to the adjustment device either. With an astonished tone she said that the battery had died and that she would try her hardest to reach our Neurologist. Due to being a Sunday that was quite hard, but our Neurologist came through with instructions. The right side battery was modulated to increase the pulsations to compensate the other side. But that did not work for long.

Another 24-hour shift came up for me. I was hesitant to let hubby at home alone, so my sister-in-law was staying with us meanwhile I worked. I was right that things could turn for the worst. Hubby’s pain worsened that night and my sister-in-law had to take him to the ER once again. This time he couldn’t stand it. Hopeless, defeated and in excruciating pain, it was turning for the worse. But only God’s hand could’ve done something so fast. His uncle did everything he could to push for a appointment with a Neurosurgeon when the Medtronic assistant had told us that in was only possible in 3 weeks for an evaluation that previous night. Sea, air and soil was moved and the appointment occurred that Thursday morning scheduling him for OR that next Monday. Way to go UNCLE!!!

But there’s still something I have not told you. After all the odyssey for this change of battery, hubby had a follow-up appointment with his Neurologist. Surprise!! The other battery is running low too. So, if we had known this at the same moment that the first battery was being acquired for the change, it would have been logical to change the other one. But Nooo! No one told the Neurosurgeon that information. So once again hubby has to undergo another surgery. At least they are minor due to just being opening the chest pocket and replacing the battery.

It has been a few very hectic, exhausted months. But now, hubby is feeling much better and the pain has gone. I know it won’t be long ’til it comes back, but hopefully it will be later rather than sooner.

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X-ray of hubby’s chest. You can appreciate the battery and cables commanding the DBS.

Brain x-ray. The coiled cables are normally like that. Below them, in the center is one of the electrodes stimulating the brain.

Brain x-ray. The coiled cables are normally like that. Below them, in the center is one of the electrodes stimulating the brain.

Pain, changes and more pain

I have failed to keep up blogging and I’m really sorry for the delay in updates. Ever since the last hospital visit, my husband had to make some changes in his lifestyle. Way to have a wakeup call.

Aqua-aerobic classes, cycling training and stretching exercises have helped him diminish the body pain. This kind of training has also improve his sleeping patterns and mine.

As of last night, pain gain power over him ad we are once again at the Emergency Room of a local hospital. Waiting is exhausting and as if he could stand waiting. Yeah right! As a PD patient, his condition should be taken seriously and he should be fast tracked for treatment. But the system here fails to do that. Only those with injuries, heart attacks and fatal status get faster treatment, as they should.

PD patients should commence to ask for a more efficient fast track system. But as I regret to say this, my beautiful island is too far from getting up to date in some specific areas of the Medical World. We need regulations and improvement!

Aside

Racing for PD

Today I go all heart and soul. This week, as I said before, was amazing. I’m proud to say we have exceeded expectations with the interviews about our non-profit Corporation. But enough said about this. This blog post is about something else. This one is dedicated to a very special person in my life.

How his passion for cars and adrenaline began

How his passion for cars and adrenaline began

I meet this kid when he was 4 years old. A blond, greenish-hazel eyes with a look that captured your soul. I have seen him grow up and become the most respectful, loyal and awesome person I know and I am very proud of the man he has become. When I started dating my husband, he became one of the first people I told about hubby’s disease. He understood that it was going to get tough for me at some point, but as I have done with him throughout his life, he supported me and told me I could do anything. He became very fond of my husband and vice versa and has even said that he admires our relationship.

This 20 year old kiddo, as I call him, is an overachiever. His passion is racing cars and he loves it more than life itself. He now races in FIA Formula 3 European Championship. I really admire his desire, passion and focus to achieve his most profound dream, Formula 1 series. But the most wonderful thing that I admire from him is his desire and compassion towards helping others and his love for his family, our family. As our campaign began for our non-profit Organization, he did not hesitate and told my husband to send him the logo for a surprise. Here’s the surprise…

Advocating for Parkinson's Disease patients of Puerto Rico. April 12-14, 2013. Silverstone, UK

Advocating for Parkinson’s Disease patients of Puerto Rico. April 12-14, 2013. Silverstone, UK

I was stunned to see our logo on his Dallara F312 Mercedes racing car for this weekend’s round in Silverstone, UK. I say thanks to you my boy, thanks for always being so humble and truthful to your family, even though we don’t have the same blood as we grew up together and your family adopted mine. It means the world to me! Someday I’ll be cheering for you in the bleachers watching you race live and in my face. Soon enough! Thanks for being in my live FELIX JUAN SERRALLES IV and for supporting our cause. Puerto Rico and our family is proud of you, your achievements and the most amazing man you are.

More pictures:

Born and raised in Puerto Rico

Born and raised in Puerto Rico Facebook: Felix Juan Serralles Racing, Twitter: @felixserralles and www.fortecmotorsports.com

My husband, Juan Carlos, with Felix

My husband, Juan Carlos, with Felix Juan

Starting the journey / Comenzando la jornada

It has been the MOST AMAZING day. Hubby and I woke up at 3:30 am and left the house at 5:30 am for San Juan, PR for today’s interviews about World’s Parkinson Day. We got to the radio station and were welcomed with affection to the early morning show EL CIRCO (THE CIRCUS). First, Hubby had to do the CCN español interview via SKYPE so the producer from the radio show gave him a space to do the interview. It went perfect! Hubby has the most amazing gift to verbalize his true essence and advocacy.

Every interview had a special meaning. CNN gave us the chance to reach the Spanish-speaking audience out of Puerto Rico and educate them. EL CIRCO gave hubby a 17 minute (yes, I counted :D) interview, where they extensively talked all things Parkinson’s and how my husband accepted it at such a young age. Also, they talked of our goal to directly impact patients by improving the quality of life, our mission as a Non Profit Corporation. Then it was time to go to the House of Laws, where by a Representative’s motion, today has been declared officially Parkinson’s Day in Puerto Rico with a recognition to my husband as patient, founder and president of Parkinson Puerto Rico, INC.

Remembering all things that happened today just brings a big grin on my face and gives me good goosebumps. It’s surreal! Hubby did the most amazing job advocating for PD patients in juction with “Asociación Puertorriqueña de Parkinson (APP)” who accompanied us in this event.

(Pictures after the Spanish version).

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Ha sido el día más emocionante que he tenido en mucho tiempo. Mi esposo y yo nos levantamos a las 3:30 am y salimos de la casa a las 5:30 am para San Juan, PR para las entrevistas sobre el Día Mundial de Parkinson. Llegamos a la radio estación de La Mega, donde nos recibieron con mucho cariño al programa EL CIRCO. Antes de la entrevista con ellos, mi esposo tenía otra entrevista vía Skype con CNN en español. Muy amablemente, la producción de la radio estación le preparó un área para que hiciera su entrevista. Todo salió a la perfección. Juan tiene un don de poner verbalizar su esencia y sus deseos de ayudar a flor de piel.

Cada entrevista tuvo un significado especial. CNN en español nos brindó la oportunidad de llegar a personas que hablan español que están fuera de Puerto Rico y educarlos sobre el tema. La entrevista con EL CIRCO duró 17 minutos (si, los conté :D ), y en la cual se habló de todo lo que tiene que ver con Parkinson y cómo mi esposo aceptó su diagnóstico a tan corta edad. También hablaron de nuestra meta como Coorporación sin fines lucrativos, impactar directamente la calidad de vida de los pacientes en Puerto Rico. Luego, nos fuimos a la Casa de las Leyes (El Capitolio), donde por medio de una moción de un excelente Representante, se oficializó hoy 11 de abril como el Día Mundial de Parkinson en Puerto Rico y reconocieron la labor de mi esposo como paciente, fundador y presidente de Parkinson Puerto Rico, Inc.

Recordar todo lo que sucedió hoy me saca una gran sonrisa y me da escalofríos. Es surreal lo que se logró. Juan hizo tremendo trabajo abogando por los pacientes de Parkinson en Puerto Rico junto a la Asociación Puertorriqueña de Parkinson que nos acompañaron en este evento.

Entrevistas/Interviews: http://www.parkinsonpr.com/saladeprensa.html

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CNN español interview

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El Circo (The Circus) Show

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With my sister / Junto a mi hermana

Interview / Entrevista

For my English speaking readers:

I’m sorry to say that this time I cannot translate the interview (Just this time ;) ). I’m to darn excited about how this week started. In my previous blog I said this week will be special and will be blogging almost everyday.

As hubby and I (mostly hubby’s doing) are reaching a special goal with our non-Profit Corporation, things are working as we planned. Today came out one of this week many interviews. The top newspaper of our country did an amazing job with it and people are really responding. Tomorrow is another day full of other equally important events. I’m sorry to say that tomorrow I won’t be able to attend with him to those events, but I know that the person that will accompany him will enjoy every second of it. Thanks my friend for doing this.

Happy Parkie Awarness Week!

PD: Interview is in SPANISH http://www.elnuevodia.com/venciendoobstaculos-1486506.html

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Solo puedo decir que estoy sumamente emocionada por todo lo que ha sucedido en el día de hoy y cómo comenzó la semana. En el blog anterior había comentado que esta semana sería muy especial y que iba a escribir prácticamente diario si podía.

Mientras mi esposo y yo estamos logrando nuestra meta (la mayoría de las cosas las hace él) con la Coorporación sin fines de lucro, las cosas van como planificabamos. Hoy salió en el periódico de mayor importancia en el país la primera de múltiples entrevistas que tendrá mi esposo esta semana. Hicieron excelente labor y las personas ya empezaron a responder y ayudar. Mañana será otro día lleno de tareas igualmente importantes. Lamentablemente no podré acompañar a Juan a ellas por mi deber en el hospital, pero sé que quien va con él lo va a disfrutar mucho. Gracias amiga por acompañarlo.

¡Feliz Semana de Concientización sobre el Parkinson!

Enlace de la entrevista: http://www.elnuevodia.com/venciendoobstaculos-1486506.html

Beach day! / Día de Playa

It has been a stressful week full of hospital duties. I had another 24 hour shift on Thursday and came straight to bed on Friday morning. Slept all throughout the day. On Saturday morning, hubby and I decided to leave the house for nice and quiet beach day nearby. We took our amazing dog Brandy for her first beach outing. Oh, how wonderful it is to see her enjoy herself in the ocean! We were astonished of her instincts and her behavior. We still used her training skills in our advantage having other people around and her new Service Dog vest so she could be identified as a working dog. Hubby is getting used to the idea of having her all the time in control. Hubby had a great day without getting “Happy feet“. Here are a few pictures! (After the Spanish version ;) )

PS. As this week on Thursday is officially PD Worldwide Day, I’ll try to blog more as a special feature for our new achievements for Parkinson Puerto Rico, INC., our Non-profit Cooporation. We have a few surprises for the week! See http://www.parkinsonpr.com for more information in Spanish.

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Ha sido una semana llena de mucho estrés debido a cosas del hospital. Tuve otra guardia de 24 horas el jueves y tan pronto llegué a casa el viernes en la mañana, me recosté a descansar durmiendo prácticamente todo el día. El sábado en la mañana, mi esposo y yo decidimos irnos de playa cerca de nuestro hogar. Nos llevamos a nuestra Brandy de paseo. ¡Su primera vez en la playa! Es super emocionante verla disfrutar tanto. Estábamos muy impresionados con sus instintos y su buen comportamiento. Siempre usamos sus entrenamientos para corregirla y mantenerla cerca debido a que teníamos muchas personas a nuestro alrededor. Mi esposo se mantuvo en control de ella, logrando así poder estar en un lugar abierto y que ella cooperara como debe ser. Para evitar complicaciones, le pusimos por primera vez su chaleco de perro de Servicio para identificarla. Mi esposo tuvo un buen día sin llegar a estar “Happy feet“.  Abajo pondré fotos.

PS. Como este jueves se celebra el día Mundial del Parkinson, trataré de escribir lo nuevo que tenemos con nuestra Coorporación sin fines de lucro. Tendremos varias sorpresas para esta semana. (Ver www.parkinsonpr.com para información sobre nuestra coorporación.)

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Service dog!

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Beautiful beach in Ponce, PR.

Time to play!

Time to play!

Fun in the sun!

Fun in the sun!

Bad Parkie weekend / Un horrible fin de semana

It has been one of the most difficult weekends I have had in a while with hubby. The chronic pain has been taking over him for a week. Yesterday was horrid. As I was at work again, hubby’s sister calls to say that hubby was in too much pain and that they where on the way to the ER. I was mortified, but felt better knowing she was there. Things got worst and his doctor decided to admit him to Internal Med ward. I couldn’t leave from work, so I waited until morning.

I literally ran out of my hospital at 8 am, drove home and picked up a few things. As I get to his hospital room, hubby looked really sick. A morphine drip was attached to the IV, but hubby started complaining of excessive itchiness for about 2 hours.

Turns out that too much morphine got into his system and he got even worse. Thank God I figured it out fast enough to call the staff and they came to the rescue immediately and he’s doing better and asleep.

Pretty bad weekend!

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Ha sido uno de los peores fines de semana que he tenido en los años que llevo con mi esposo. El dolor crónico que le da ha logrado acapararse de él como ser humano. Ayer fue horrible. Mientras yo estaba en mi trabajo, mi cuñada me llama para notificarme que mi esposo estaba grave de dolor y que lo iba a llevar a Sala de Emergencias. Como yo estaba trabajando y no podía salir, ella lo llevó y me quedé un poco más tranquila. La cosa se puso peor en Sala de Emergencias y tuvieron que internarlo al área de Medicina Interna. No podía irme del trabajo y tuve que esperar que mi turno de 24 horas se terminara.

Literalmente salí corriendo de mi hospital a las 8 am, guié a mi casa a recoger algunas cosas y seguí para el hospital que estaba mi esposo. Cuando llegué a su habitación, mi esposo se veía muy enfermo. Tenía una infusión por vena de morfina, pero se empezó a quejar de mucha picazón durante 2 horas.

Simplificando el asunto, Juan tenía mucha morfina en su sistema y por eso era la picazón. Se puso peor de lo que estaba. Gracias a Dios que le pasó conmigo y me di cuenta a tiempo de lo que estaba sucediendo. De inmediato llamé a la enfermera y corrí al pasillo a apurarlas. Ya él está mucho mejor y durmiendo tranquilo.

¡Un fin de semana horrible!

Playing doctor, being patient / Jugando a doctor, siendo paciente

Friday was my day for a 24 hour shift until Saturday morning. After doing all my work, I went to my room to sleep. At 4 am I received a text message from hubby with a 911 distress sign. There’s only one meaning to a text with a 911. Hubby is in excruciating pain. I hurried and called him back. BINGO! Hubby couldn’t even speak clearly. His PD had taken over him and had made stiff as a tree. So told him to try and call an ambulance that could take him to me. I’m working a hospital that in 40 minutes away from our home town. As I expected, the ambulance could only take him to nearest hospital and if we wanted to be take to mine, we had to pay. With Medicare coverage this should not be a problem. But as I know the system, I woke up my chief intern and told him I had to leave.

It took me 20 minutes to get home. Yes, I drove too fast. But as got home, I found him lying in bed, already dressed and ready to go. I still don’t know how he did it.I gathered everything we needed for a long stay at the ER just in case. With only 2 hours of sleep during shift, we drove back to the ER. Thankfully it was deserted and he got attention immediately. Some powerful pain killers and ansiolitics drugs later, hubby was still in pain after an hour of them. So i tried to make him sleep without results.

Sorry to say that, in my country, most doctors at Er don’t know how to handle PD patients with this kind of pain. One of the doctors who attended hubby’s pain crisis didn’t even know how manage it. It’s not there fault. It’s just that most of them don’t associated chronic pain with PD due to not being a typical PD symptom.

We were at the ER since 6 am ’til 12 pm. As we drove back home, he started mumbling weird things as he does when he’s under meds. Under circumstances, it gets funny sometimes. We got home and as we where both exhausted, it was bedtime definitely.

Today it looks like he’s feeling much better, but he’s been sleeping almost all day.

P.D: Here are some articles on pain associated with PD

http://www.pdf.org/en/winter04_05_Pain_in_Parkinsons_Disease

http://www.pdf.org/winter12_understanding_pain_pd

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El viernes fue mi día de guardia de 24 horas hasta el sábado. Luego de terminar todo mi trabajo, me fui a dormir un rato. A las 4 am recibo un mensaje de texto de mi esposo con un 911. Eso sólo significa que está con dolor extremo en el cuerpo. Rápido lo llamé. ¡BINGO! No podía casi ni hablar. El Parkinson se había apoderado de él y estaba trinco como un tronco. Le dije que tratara de llamar una ambulancia que lo llevara a mi hospital. Trabajo a 40 minutos de nuestra ciudad. Como era de esperarse, la ambulancia solo puede llevarlo al hospital más cercano. Si lo llevaba al mío, hubiésemos tenido que pagar. Se supone que con un plan Medicare esto no suceda. Y como conozco el sistema, levanté al jefe de guardia y le dije que me tenía que ir.

Me tomó 20 minutos en llegar a casa. Sí, guié demasiado rápido. Tan pronto llegué, lo encontré en la cama ya vestido y listo para irnos. Aún no se como lo hizo. Con tan sólo dos horas de descanso durante la guardia, viajamos de nuevo a mi hospital. Gracias a Dios la Sala de Emergencia estaba desierta y lo atendieron rápido. Después una hora de medicamentos para el dolor y la ansiedad, seguía con dolor. Intenté que se quedara dormido sin resultados. El dolor era muy fuerte.

Lamentablemente, en mi país, no están entrenados totalmente para manejar pacientes de Parkinson con este tipo de dolor. Uno de los médicos que nos atendió no sabía realmente que hacer. No es su culpa. Simplemente no conocen la asociación entre dolor crónico y Parkinson debido a que no es un síntoma típico de la condición.

Estuvimos en Sala de Emergencia desde las 6 am hasta las 12 pm. De camino a casa, Juan empezó a balbucear cosas extrañas como lo suele hacer cuando está bajo este tipo de medicamentos. Bajo las circunstancias, muchas veces es gracioso lo que dice.

Al parecer hoy se siente mucho mejor, pero ha estado durmiendo casi todo el día.

PD: Aquí les dejo algunos artículos de dolor asociado a Parkinson. Son en inglés debido a que es lo único que consigo.

http://www.pdf.org/en/winter04_05_Pain_in_Parkinsons_Disease

http://www.pdf.org/winter12_understanding_pain_pd

Brandy on duty / Brandy trabajando

SERVICE DOG In Training Medical Alert 2.5 x 5 inch Sew-on Black Rim PatchAs of last Monday, our bright Labrador Brandy, started her basic training to become a service dog. With only two classes, Brandy behavior has improved dramatically. Learning how to walk besides Hubby’s electric Go Go scooter has been her greatest achievement this week. Her trainer is great with her and has been helping us understand Brandy’s body language.
It has been our dream since she started showing her abilities (See my previous blog: Brandy) that she could help Hubby when I’m not around doing things like bringing him the meds, shoes, etc. But most of all, Brandy has become an Emotional Service Dog for him. She makes him laugh even we I can’t.
With these training classes not only Brandy gets to learn, but also us with the understanding of how we should conduct her in our environment and out of it. I hope that in just a few more classes, I can walk her without a leash and prevent her from running away from me. And hubby gets to walk her too without struggling with her. For hubby it is a big challenge because that’s his baby girl, his true companion and his soul mate.

Pictures below after the Spanish version ;).

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Desde el lunes pasado, nuestra brillante labrador Brandy, comenzó sus clases de entrenamiento básico para perro de Servicio. Con tan solo dos clases, su comportamiento ha mejorado dramáticamente. Aprendió a caminar al lado de la motora eléctrica de mi esposo y esto ha sido su mayor logro esta semana. Su entrenadora es excelente con ella y nos ha estado ayudando a entender el lenguaje corporal de Brandy.

Ha sido nuestro sueño desde que empezó a demostrar sus habilidades (ver mi blog anterior: Brandy) que ella podía ayudar a mi esposo trayéndole sus medicamentos, zapatos, etc. Pero sobretodo, Brandy se ha convertido en una perra de Servicio Emocional para él. Lo hace reír cuando ni yo puedo.

Con estas clases de entrenamiento no solo Brandy aprende, sino también nosotros con el entendimiento de como debemos conducirla en nuestro ambiente y fuera del mismo. Yo espero que dentro de poco pueda pasearla sin correa y prevenir que salga corriendo cada vez que la sacamos. Y para mi esposo, que la pueda pasear sin tener que estar halándola. Para Juan es un gran reto por ella ser su bebé, su compañía verdadera, su alma gemela.

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Aside

Happy 35th birthday!

Preparations have been going on for a week, all his doing, for hubby’s 35th birthday. Cleaning, organizing, preparing the food and more cleaning. Everybody was coming. He had his mind set on how he wanted it, with his unique style. Party at our house, cold slaw, rice with beans and BBQ ribs for dinner. It was the first birthday I spend with him after 4 years of studying abroad. I used to send him gifts and could not be physically present due to it being right in the middle of midterms.

Best thing we did was ask for a themed cake. He wanted it to be an iPad with one of his designs as a background. Boy, it got difficult to find someone to do it in so short notice. But he got it!Image

Don Q Cristal is his favorite rum, the one and only truly Boricua rum (as we call ourselves, Puertorricans). So you get the picture, literally. We had soo much fun, eventhough I spend most of the night in the kitchen preparing the appetizers (housewife duties LOL). Hubby had a blast and not even PD stopped him from having fun.

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Little bit of History:

The term Boricua comes from our roots of the indian tribes who lived here before Puerto Rico got discovered by Christopher Colombus. Indian tribes used to call the island Boriken. Therefore, puertirricans feel proud of the term “Boricua”. We use a phrase in spanish “Yo soy boricua, pa’ que tu lo sepas”, which means: I’m Boricua, so you know.