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Reglas (R.U.L.E.S.) para potenciar la resolución de problemas

Cuando alguien que usted cuida le comparte un problema que está teniendo, es tentador intentar resolverlo. Queremos que la persona que nos importa se sienta mejor. Pero cuando le dice lo que “debería” hacer, puede comenzar un ciclo de frustración. Es posible que la respuesta sea una explicación de por qué su solución no funcionará. Entonces, usted ofrece otra. Y luego le responde que eso tampoco funcionará.

En este ciclo, su ser querido se frustra porque siente que no lo escuchan ni lo comprenden. Y usted se frustra porque sus soluciones no son bien recibidas.

Hacer lo siguiente lo que puede ayudar a romper este ciclo. Las personas tienen más probabilidades de tener éxito cuando desarrollan sus propias soluciones y se comprometen con ellas. Incluso si un ser querido parece estar estancado en un desafío con el que lucha, todavía tiene ideas propias de las que puede sacar provecho. Al seguir cinco REGLAS, puede ayudarlo a resolver problemas con soluciones propias que funcionen mejor para él.

La primera regla es R: Resista (Resist) la necesidad de solucionar. El deseo de solucionar es normal. Pero no se apresure a dar consejos, estar de acuerdo o en desacuerdo, ni siquiera haga muchas preguntas. De hecho, muchas personas piensan que saben escuchar porque hacen preguntas. Pero hacer preguntas demasiado pronto puede en realidad desviar a la persona de lo que está tratando de decirle. En lugar de eso, conténgase, incluso si cree que ya tiene la solución perfecta. 

La siguiente regla es U: Comprenda (Understand) el problema que su ser querido trata de resolver.

La comprensión proviene de una buena escucha y comunica que la otra persona es importante para uno mismo. Piense en escuchar para entender como si fuera un trampolín. Deje que la persona que habla haga rebotar sus ideas sobre usted.

Al escuchar para comprender, preste toda su atención. No haga nada más mientras escucha y evite pensar en lo que va a decir a continuación. Sea curioso. Concéntrese en intentar descubrir la perspectiva del otro. No esté de acuerdo ni en desacuerdo. Escuche de manera activa. Diga lo que escuchó. Esto no significa repetir exactamente lo que dijeron. Es ofrecer su comprensión de lo que la persona podría querer decir.

La siguiente regla es L: Conozca (Learn) las ideas de la otra persona con respecto a cómo resolver el problema. Haga preguntas abiertas que incentiven a pensar en posibles soluciones, como las siguientes:

• “Probablemente haya muchas soluciones buenas ”.
• “¿Cuáles se te ocurren?”.
• “¿Qué información te ayudaría a tomar una decisión?”.
• O “¿Qué crees que deberías hacer en este momento?”.

Mientras piensan en opciones, no comparta sus opiniones. Pero si tiene una inquietud que necesita compartir, una mejor respuesta es decir algo como “No estoy seguro de qué te parecerá lo que pienso, pero una preocupación que tengo sobre esa idea es...”.

De esta manera, usted comparte sus pensamientos y comprende que es posible que la otra persona tenga una opinión diferente.

Cuando crea que es hora de avanzar con una decisión, pregunte:

“¿Esta es la solución que quieres probar?” o “de las soluciones de las que hablamos, parece que esta es la que más te interesa”. Si llegan a un acuerdo, es una buena señal para pasar a...

La siguiente regla, E: Empodere (Empower). Empoderar implica ayudar a la persona a desarrollar un plan paso a paso de cómo llevará a cabo su solución y cuándo lo hará.

Podría preguntar:

• “¿Por dónde empezarás?”.
• “¿Cómo podrías hacer que esto suceda?”.
• O “¿Qué debe pasar a continuación?”.

Una vez que el plan esté desarrollado, ayude a fijarlo con preguntas centradas en la acción, como las siguientes:

• “¿Estás preparado para hacer esto?”.
• “¿Harás esto?”.
• U “¿Hoy tienes intención de hacer esto?”.

Si la otra persona responde “sí”, eso conduce a la regla final, S: Apoye (Support).

Se trata de formas específicas en las que puede ayudar. Pero no dé por sentado que ya sabe cómo hacerlo. Pregunte:

• “¿De qué maneras puedo ayudar?”.
• “¿Cómo podría apoyarte en esto?”.
• O “¿Qué ideas tienes sobre cómo puedo ayudarte a medida que empiezas?”.

Si la otra persona no tiene respuestas, podría decir:

• “Una forma que podría resultar útil es (complete). Me pregunto qué te parece eso”.
• O “¿Qué pensarías si yo te ayudara haciendo (complete)?”.

Y recuerde, parte de mostrar apoyo es celebrar el progreso a lo largo del camino.

Esto puede generar confianza y ayudar a la persona a mantener el rumbo.

Por lo tanto, la próxima vez que sienta que la necesidad de solucionar empieza a emerger dentro de usted, recuerde las REGLAS. De esta manera, empoderará a su ser querido para que encuentre sus propias soluciones que funcionen mejor para él.

English: Today, we will be talking about ways you can take charge of your health…

SPANISH: Hoy vamos a hablar cómo puede hacerse cargo y tomar control de su salud.

English: Specifically, three skills to help you better understand information you get from your doctor. These are three simple skills or tips you can use at your next doctor's appointment.

SPANISH: Específicamente, hay tres maneras de entender mejor la información que reciba de su médico y usar estos tres pasos para tomar control de su salud. Son tres simples destrezas o trucos que puede usar en su próxima cita médica.

English: Ask, Repeat, Talk, are three skills to help you understand and act on the information your doctor gives you. Ask about the information you receive to make sure you understand. Repeat what you hear to make sure you know what to do. Talk with confidence and be specific so the doctor knows how you are doing and your needs.

SPANISH: Preguntar sobre la información que reciba para asegurase que entiende. Repetir lo que escuchó para asegurarse que sabe lo que tiene que hacer. Hablar con confianza, y ser específico para que el doctor sepa como está y qué es lo que necesita.

English: We will start with ‘ASK’. Learn to be curious. Ask questions. Asking questions is important to have good communication with your doctor. If you don't ask questions, they may think that you know the answer or that you don't want more information. Curiosity, wanting to know more, can help you better understand the information you receive. And asking, can help you collaborate, be a partner with your doctor; to work more actively with your doctor on how to take care of your health. If you have any doubts...... Ask, don't wait to be asked. Take charge of your health! Well, and what can I ask?

SPANISH: Comenzaremos con 'PREGUNTAR'. Aprenda a ser curioso. Haga preguntas. El preguntar es importante para tener una buena comunicación con su médico. Si no hace preguntas, ellos puedan pensar que usted sabe la contestación o que usted no quiere más información. La curiosidad, el querer saber más, le puede ayudar a mejor entender la información que recibe. Y el preguntar, le puede ayudar a colaborar con su médico; a trabajar más activamente con su doctor en cómo cuidar su salud. Si tiene alguna duda… Pregunte, no espere a que le pregunten. ¡Tome riendas en su salud! Bueno, ¿Y qué puedo preguntar?

English: There are three important questions that you should always remember to ask at any medical appointment: What do I have? What is my problem? What do I need to do?… and Why is it important for me to do this? If you have any doubts, or do not understand something, remember you can ask anything.

SPANISH: Hay tres preguntas importantes que siempre debe recordar hacer en cualquier cita médica: ¿Qué es lo que tengo? ¿Cuál es mi problema de salud? ¿Qué tengo que hacer?… y ¿Porqué es importante que haga lo que me dice? Si tiene alguna duda, o no entiende algo, recuerde que usted puede preguntar cualquier cosa.

English: Now, a great question is... “What if I ask, but still don’t understand? Then, tell your doctor.

SPANISH: Ahora, la gran pregunta…

¿Qué pasa si yo hago una pregunta y todavía no entiendo? Entonces, déjele saber a su doctor que todavía no entiende.

English: Let your healthcare team know if you still don’t understand what you need. You might say, “This is new to me. Will you please explain that to me one more time?” Don’t feel rushed or embarrassed if you don’t understand something. Ask your healthcare provider again. Studies show that people who understand their doctor's instructions and recommendations better make fewer mistakes when taking their medicines or preparing for a medical exam or procedure. So, do not stop asking! That's the first skill. Let's talk about the second one.

SPANISH: Si no entiende, hágaselo saber a su médico o a su equipo de salud Podría decir: "Esto es nuevo para mí. Por favor, explícamelo una vez más. ” o “¿Podría repetir la información? No se sienta apurado o avergonzado si no entiende algo. Pregunte de nuevo. Estudios demuestran que las personas que entienden mejor las instrucciones y recomendaciones de su médico, cometen menos errores al tomarse sus medicinas o al prepararse para algún examen o procedimiento médico. Así que ¡No deje de PREGUNTAR! Esa es la primera destreza. Veamos cuál es la segunda.

English: To take control of your health, the second skill we must remember is to REPEAT. Repeating is an opportunity for you to give your own understanding of what the healthcare team has explained to you or shown you. This idea could be applied to many things: a pharmacist telling you how to split a pill, a physical therapist showing you how to wear a brace, a doctor showing you how to monitor your blood sugar and other things that are told or shown to you that may be helpful to repeat.

SPANISH: Para tomar control de su salud, la segunda destreza que debemos recordar es REPETIR. Repetir es una oportunidad para ver si ha entendido lo que su médico le explicó. Porque al repetir tiene la oportunidad de explicarle a su doctor, en sus propias palabras, lo que ha entendido. Esta idea se puede aplicar a muchas cosas, por ejemplo: Cuando el farmacéutico le dice cómo partir una píldora o tableta en dos; cómo dividirla. Cuando el terapista físico, o fisioterapeuta, le enseña cómo ponerse o cómo usar un aparato ortopédico. Cuando el doctor le explica cómo medir y controlar su nivel de azúcar en la sangre. En fin, repetir es una destreza muy útil. Le ayuda a ver si ha entendido cualquier tipo de información que le expliquen, o que le enseñen.

English: When you repeat the information remember this tip: Use your own words rather than simply holding the doctor or nurse’s words in your memory and racing to say the exact same thing. Take a moment to think about it and then say it in the words that you would use if you were explaining it to a friend or family member. Now let's look at the third skill.

SPANISH: Cuando repita la información recuerde este detalle: Use sus propias palabras. No se apresure, ni trate de recordar o usar las mismas palabras del doctor o la enfermera. Tome un momento para pensarlo y luego, repita la información como si le estuviera explicando a un amigo o a un familiar. Ahora veamos la tercera destreza.

English: Let’s look at using the third skill – TALK. Many of us hold back when we talk to our doctors or nurses; we dare not speak. Sometimes, we don’t know what information to share. You may feel pressured if your healthcare team seems rushed or if you feel they are not listening to you. Use simple words to express yourself and get your message across. Don't be afraid to express yourself, to say what you feel or are worried about. Express yourself and share information that will help your healthcare team guide your care and help you work better with them. Expressing yourself will help you to be heard, and make sure your needs are met. Expressing yourself , sharing, will also help you remember information, and give you more control over your health. Let's see how we can express ourselves.

SPANISH: Hablemos de la tercera destreza – Conversar. A muchos de nosotros nos sucede que cuando hablamos con nuestro médico, nos contenemos, nos restringimos; no nos atrevemos hablar. A veces, no sabemos qué información compartir. Tal vez nos sentimos apresurados, pensamos que el doctor está ocupado y no tiene tiempo de escucharnos. Use palabras simples para expresarse y transmitir su mensaje. No tenga miedo de expresarse, de decir lo que siente o le preocupa. Compartir información, le ayudará a que pueda relacionarse mejor, a trabajar mejor, con su médico o equipo de salud. Expresarse le ayudará a que le escuchen … y que se satisfagan o se resuelvan sus necesidades médicas. Y también, el compartir, el expresarse, le ayudará a poder recordar información más fácilmente. Sobretodo, podrá lograr un mejor control sobre su salud. Veamos cómo podemos expresarnos.

English: When sharing information with your doctor or healthcare team , it is useful to use “I” statements. “I” statements offer a way for you to let your doctor or healthcare team know if you feel rushed, confused, or threatened. Remember that it is important for your doctor to know how you’re feeling. The following are all examples of assertive “I” statement messages: “I need to ask some questions.” “I feel confused.” “I prepared for this appointment and want to show you some of the changes I’ve tracked.”

SPANISH: Al compartir información con su médico, es muy útil usar las afirmaciones o expresiones que comienzan con la palabra “yo”. Usando "yo" es una buena manera de decirle a su médico si se siente apurada, o confundida. Recuerde que es importante que su médico sepa cómo se siente. Aquí tenemos varios ejemplos de expresiones usando "Yo". “Yo necesito hacerle unas preguntas.” “Yo me siento confundida.” “Yo me preparé para esta cita/para esta consulta y aquí le muestro algunos de los cambios que he observado.”

English: In summary: Asking, Repeating, and Talking are three skills that will help you take control over your health. To help you understand and act on the information you receive from your doctor, remember these three steps: Ask about the information you receive to make sure you understand. Repeat what you hear or receive, to make sure you know what to do. And Talk – speak with confidence, express what you are feeling and be specific so that the doctor understands how you are doing and what are your needs. We hope this information will help you in any doctor’s appointment and help in taking charge of your health.

SPANISH: En resumen: Preguntar, Repetir, y Conversar son las tres destrezas que le ayudarán a tomar el control sobre su salud. Para entender y poner en práctica la información que reciba de su médico, recuerde los tres pasos: Preguntar sobre la información que reciba para asegurase que entiende. Repetir lo que oye o recibe, para asegurarse que sabe lo que tiene que hacer. Y Conversar - hablar con confianza, expresar lo que siente y ser específico para que el doctor sepa cómo está y qué es lo que necesita. Esperamos que esto le ayude en cualquier cita médica y así logre un mejor control sobre su salud.

English: Thank you!

SPANISH: ¡Gracias!

English: Improving Communication with Your Doctor

Spanish: Cómo mejorar la comunicación con su médico

English: Today we’ll talk about different communication styles and how to improve communication with your doctor or healthcare team.

Spanish: Hoy hablaremos sobre diferentes estilos de comunicación y cómo mejorar la comunicación con su médico o su equipo de profesionales de salud.

English: There are several communication styles. Let’s discuss the differences between passive, assertive/confident, and aggressive communication styles.

Spanish: Hay varios estilos de comunicación. Comparemos las diferencias entre comunicación pasiva, comunicación asertiva o llena de confianza, y estilos de comunicación agresivos.

English: Passive people are often afraid to speak up, speak softly, give in to others, and usually fail to express their feelings or needs. A passive communication style might sound like… “It really doesn’t matter that much” or “Okay, that’s fine.”

Spanish: En comunicación pasiva, las personas a menudo tienen miedo de hablar, hablan en voz baja, tienden a ceder a lo que dicen los demás, y por lo general no expresan sus sentimientos o necesidades. Un estilo de comunicación pasivo puede sonar como… "Realmente no tiene importancia", "OK, está bien”, "No pasa nada."

English: Assertive people express their wishes, questions, and needs in a clear and direct way so that other people — like your doctor are able to understand what it is they want and need.

Spanish: Las personas asertivas suelen expresar sus deseos, hacer preguntas, y expresar sus necesidades de forma clara y directa para que otras personas — como su médico, entiendan qué es lo que quieren y necesitan.

English: Aggressive people might disrespect the other person and deny them the chance to express their opinions. An aggressive communication style might sound like… “I’m right, and you’re wrong.”

Spanish: Las personas que se comunican de forma agresiva, podrían faltarle el respeto a la otra persona y les niegan la oportunidad de expresar sus opiniones. Un estilo de comunicación agresivo podría sonar cómo "Yo tengo razón, y tú estás equivocado.”

English: Assertiveness is not the same as aggression. Assertiveness is about self-respect and expressing your opinions, whereas aggression is about disrespecting the other person and denying them the chance to express their opinions. Assertive communication involves eye contact that demonstrates interest, a speaking voice at a level tone and knowing how, when, where, and what you choose to say.

Spanish: La asertividad no es lo mismo que la agresión. La asertividad se trata de respetarse a sí mismo y expresar tus opiniones, mientras que la agresión le falta el respeto a la otra persona y le niega la oportunidad de expresar sus opiniones. La comunicación asertiva implica el contacto visual, que demuestra interés por el otro, hablar en un tono de voz nivelado y el saber cómo, cuándo, dónde y qué elige a decir.

English: “I” statements offer a way for you to let your healthcare team know if you feel rushed, confused, or threatened. It is important for the healthcare team to know how you’re feeling. Speak assertively, using the formula: “I feel _____ when I ___ _ because ____". “I” statements are part of being confident in our communication. They don’t assign blame.

Spanish: Las afirmaciones o expresiones usando "yo”, son maneras de comunicarle a su equipo médico si se siente apurado, confundido o amenazado. Es importante que su equipo médico sepa cómo se siente. Hable asertivamente, usando la fórmula de “Yo me siento _ _ _ _ _ cuando _ _ _ _ porque ____." Las expresiones usando " yo " ayudan a hablar con seguridad y tener confianza en cómo nos comunicamos….. Y no culpan a nadie. Yo me siento… Yo creo que… Pienso que… Me parece… Vamos a ver dos ejemplos.

English: The following are two examples of assertive communication using the formula: “I feel _____ when ___ _ because ____," as a way of expressing how you feel, and speaking up when you feel that way, and why you feel that way. Let's look at the first example: “I feel frustrated when I ask a question on the portal and don’t get a reply because I am not sure whether I am supposed to take my next dose.” Another example: “I feel really happy when you take the time to answer my questions because I leave feeling clear on what I’m supposed to do.” Remember, it's OKAY for you to ask questions and tell your medical team what you need, for example... if you want your doctor or nurse to talk to you slower, clearer, louder, or to use simpler language.

Spanish: Aquí vemos dos ejemplos de comunicación asertiva usando la fórmula: “Yo me siento _ _ _ _ _ cuando _ _ _ _ porque ____", como una forma de expresar cómo se siente, y poder decir cuando se siente de esa manera, y por qué se siente de esa manera. Veamos el primer ejemplo: "Me siento frustrada / frustrado cuando hago una pregunta en el portal y no me responden porque no estoy segura/ seguro si me debo tomar mi próxima dosis.” Otro ejemplo: “Yo me siento realmente feliz/ muy contenta cuando usted toma el tiempo para responder a mis preguntas porque me voy, sabiendo claramente lo que debo hacer.” Recuerde, está bien que haga preguntas y le diga a su equipo médico lo que necesita, por ejemplo... si desea que su médico o enfermera le hable más despacio, más claro, más alto o que use un lenguaje más simple.

English: Being honest and detailed builds trust and allows you to give specific information that is helpful in guiding your healthcare experience. This allows you to state specific ways you are feeling, instead of using general descriptions like “I’m okay” or “I’m fine.” For example... “One thing that is different…” “This is embarrassing to talk about, but…” “This began on this date…” “It felt like this…” And... “I’m uncertain about this…”/p>

Spanish: Ser honesto y detallado genera confianza y le permite dar información específica que puede ayudar en su atención médica. Sea más específico al decir cómo se siente, en lugar de usar descripciones generales como "Estoy bien" o "No pasa nada.” Por ejemplo... "Una cosa que es diferente..." "Me avergüenza hablar de esto, pero..." "Esto comenzó en esta fecha..." “Me sentía así..." y... "No estoy segura de esto..."

English: In Summary… To improve communication with your doctor, Be assertive, Speak with confidence, and be honest and specific. Your doctor and healthcare team appreciate honest and detailed communication. Remember, they are here to help you.

Spanish: En Resumen… Para mejorar la comunicación con su médico, Sea asertivo, Hable con confianza, Sea honesto y especifico. Su médico y profesionales de la salud aprecian una comunicación sincera y detallada. Recuerde, ellos están para ayudarle.

English: Thank you!

Spanish: ¡Gracias!

You or your loved one may have decided with your doctor to take PROCYSBI (cysteamine bitartrate) delayed-release capsules and delayed-release oral granules through a gastrostomy tube, or G-tube. This video will walk you through the process, from preparing PROCYSBI for administration to giving the medicine through a G-tube.

If you have any questions about PROCYSBI or taking PROCYSBI through a G-tube, contact your doctor or your Patient Access Liaison (your PAL). You should also look at the Instructions for Use, which are included when your PROCYSBI is sent to you and can also be found at PROCYSBI.com.

Let’s get started.

Before you gather your materials and PROCYSBI capsules or packets, always wash your hands to reduce the spread of germs. Now you’re ready to gather your materials.

Here’s what you’ll need:

Catheter tip syringes and a feeding tube for a G-tube that is size 14 French or larger. A straight, or bolus, feeding tube is best.

Strained applesauce. Do not use chunky applesauce.

A clean bowl and measuring cup.

Water.

Any fruit juice, except grapefruit juice.

And the prescribed dose of PROCYSBI.

Now you’re ready to start the preparation process. Unclasp the G-tube button and attach the feeding tube. Flush with 5 milliliters of water to clear the button.

Measure the strained applesauce, and put it in a clean bowl.

Make sure your hands are dry before opening PROCYSBI capsules.

To open a capsule, grab each end and twist slowly. Be careful not to pinch the capsule in the center or crush it. Sprinkle the microbeads on top of the applesauce.

To open a packet, tear open the packet along the perforated line. Sprinkle the microbeads on top of the applesauce.

Use a syringe to gently stir the PROCYSBI microbeads into the applesauce.

Draw the mixture up into the syringe. Draw up at least 10 milliliters for children and about 40 milliliters for adults.

Next, connect the syringe to the feeding tube. Fill the feeding tube with the mixture. Hold the syringe and feeding tube in a horizontal position—straight across—to administer the mixture. Give the mixture at a quick and steady pace.

Repeat as needed to give all of the mixture.

All of the mixture should be given within 30 minutes of mixing. None of the mixture should be saved.

To be sure all of the mixture has been given, pour some liquid into the bowl, and swirl it around to get the remaining applesauce. You can use water or juice, but do not use grapefruit juice.

Draw the liquid up into another syringe. Gently swirl the syringe and flush the G-tube to be sure that none of the applesauce and microbead mixture remains.

You’re finished. Although there are a number of steps in the process, it becomes more natural over time. Be sure to clean all your equipment for your next use. Use this video to go through the steps whenever you need to.

If you have any questions about giving PROCYSBI through a G-tube, see the PROCYSBI Instructions for Use, or contact your doctor or a PAL at Horizon Therapeutics. Support is always available.

USE and IMPORTANT SAFETY INFORMATION

What is PROCYSBI?

PROCYSBI (cysteamine bitartrate) delayed-release capsules and delayed-release oral granules is a prescription medicine used to treat nephropathic cystinosis in adults and children 1 year of age and older. It is not known if PROCYSBI is safe and effective in children under 1 year of age.

IMPORTANT SAFETY INFORMATION

What is the most important safety information I should know about PROCYSBI?

PROCYSBI can cause serious side effects, including:

• Skin, bone, and joint problems. People treated with high doses of cysteamine bitartrate may develop abnormal changes of their skin and bones, such as stretch marks, bone injuries (such as fractures), bone deformities, and joint problems. Check your skin while taking PROCYSBI. Tell your doctor if you notice any skin changes or problems with your bones or joints. Your doctor will check you for these problems.
• Skin rash. Skin rash is common with cysteamine bitartrate and may sometimes be severe. Your dose of PROCYSBI may need to be decreased until the rash goes away. If the rash is severe, your doctor may tell you to stop taking PROCYSBI. Tell your doctor right away if you get a skin rash.
• Stomach and bowel (intestinal) problems. Some people who take other medicines that contain cysteamine bitartrate develop ulcers and bleeding in their stomach or bowel. Tell your doctor right away if you get stomach-area pain, nausea, vomiting, loss of appetite, or vomit blood.
• Central nervous system symptoms. Some people who take other medicines that contain cysteamine bitartrate develop seizures, depression, and become very sleepy. The medicine may affect how your brain is working (encephalopathy). Tell your doctor right away if you develop any of these symptoms.
• Low white blood cell count and certain abnormal liver function blood tests. Your doctor should check you for these problems.
• Benign intracranial hypertension (pseudotumor cerebri) has happened in some people who take immediate-release cysteamine bitartrate. This is a condition where there is high pressure in the fluid around the brain. Your doctor should do eye examinations to find and treat this problem early. Tell your doctor right away if you develop any of the following symptoms while taking PROCYSBI: headache, buzzing or “whooshing” sound in the ear, dizziness, nausea, double vision, blurry vision, loss of vision, pain behind the eye, or pain with eye movement.

Who should not take PROCYSBI?

Do not take PROCYSBI if you are allergic to penicillamine or cysteamine. What should I tell my doctor before taking PROCYSBI?

Tell your doctor if you have any other medical conditions, including if you:

• drink alcohol.
• have a skin rash or bone problems.
• have or have had stomach or bowel (intestinal) problems including ulcers or bleeding.
• have a history of seizures, lack of energy, unusual sleepiness, depression, or changes in your ability to think clearly.
• have liver or blood problems.
• are pregnant or plan to become pregnant. It is not known if PROCYSBI will harm your unborn baby. Tell your doctor right away if you think that you are pregnant. Talk with your doctor about the benefits and risks of taking PROCYSBI during pregnancy.
• are breastfeeding or plan to breastfeed. You should not breastfeed during treatment with PROCYSBI. Talk with your doctor about the best way to feed your baby if you take PROCYSBI.

What should I avoid while taking PROCYSBI?

• Do not drive or operate machinery until you know how PROCYSBI affects you. PROCYSBI can make you sleepy or less alert than normal.
• Do not drink alcohol if you take PROCYSBI. Drinking alcohol while taking PROCYSBI may change how PROCYSBI works and may cause an increase in the amount of PROCYSBI in your blood that may cause serious side effects.

What are the possible side effects of PROCYSBI?

• See “What is the most important information I should know about PROCYSBI?” The most common side effects of PROCYSBI include: vomiting, nausea, stomach (abdominal) pain, pink eye, diarrhea, cold, tiredness, flu, headache, problems with body salts or electrolytes, infection of ear, nose or throat, joint pain.

These are not all the possible side effects of PROCYSBI. Call your doctor for medical information about side effects.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit http://www.fda.gov/medwatch or call 1-800-FDA-1088.

For additional important safety information, see the Patient Package Insert available at PROCYSBI.com and discuss with your doctor.

Today, we will be talking about science-based ways you can take charge of your health...

Specifically, how you can better understand and use the information you received to improve your health and well-being.

These helpful tools will help you better understand what your healthcare team is telling and asking you, help you ask the important questions to get the answers you need, and discover tips for speaking confidently with your healthcare team so you feel better about your interactions with them.

Why is this important?

Well, have you ever been confused by a medical term?

Have you ever been in a situation in which you thought you understood something your doctor explained, but then later realized you didn't understand it?

Understanding and using information, particularly health information, can be difficult.

In the most basic way of looking at it, communication is challenging. In our everyday lives, we often think "communication" occurs just by talking but sometimes people don't hear us, understand us, or even know what we mean.

There is often an illusion that you communicated clearly. Doctors and other people who are part of your care team are no different!

This can be especially true in a medical setting where doctors and other members of your healthcare team have limited time. They are doing their best to share important information, but sometimes they are rushed, use words that don’t make sense, or are too technical.

Sometimes we think we get it, but then we forget by the time we get home or remember it incorrectly. A.R.T. is a helpful way to remember three science-based ways to understand and act on the information your doctor gives you.

We will start with the “A” in A.R.T.—ASK.

Being curious can help you become a healthier patient.

Asking questions is key to good communication with your doctor. If you don't ask questions, they may assume you already know the answer or that you don't want more information.

Don't wait for the doctor to raise a specific question or subject; they may not know it's important to you.

Sometimes, it can be confusing to think of the right time to ask questions. But, the best time is ALL the time.

“Ask Me 3” is a new patient education program designed to help communication between healthcare teams and patients

Ask Me 3 encourages you to understand the answers to 3 questions:

• What is my main problem?
• What do I need to do? And...
• Why is it important for me to do this?

Feel free to ask these three simple but important questions whenever you meet with your doctors, nurses, and their staff.

Now, a great question is... “What if I ask, but still don’t understand? Let your healthcare team know if you still don’t understand what you need.

You might say, “This is new to me. Will you please explain that to me one more time?” Don’t feel rushed or embarrassed if you don’t understand something. Ask your healthcare provider again.

Repeating is an opportunity for you to give your own understanding of what the healthcare team has explained to you or shown you. This could be applied to many things:

• a pharmacist telling you how to split a pill
• a physical therapist showing you how to wear a brace
• a doctor showing you how to monitor your blood sugar
• and other things that are told or shown to you that may be helpful to repeat

When repeating or showing back, there are a few things to remember: Use your own words rather than simply holding the doctor or nurse’s words in your memory and racing to say the exact same thing. Take a moment to think about it and then say it in the words that you would use if you were explaining it to a friend or family member.

Repeat back the actions and activities you are being asked to do. Show the steps your healthcare team went through and ask questions along the way if something doesn't make sense.

Think about the type of learner you are—if you like seeing things versus hearing things, that might make a difference in how you want the information shared with you.

Many of us hold back when we talk to our doctors or nurses; we think of our healthcare team as experts, which can make it harder to have a two-way conversation with them. Sometimes, we don’t know what information to share. You may feel pressured if your healthcare team seems rushed or if you feel they are not listening to you.

Let’s discuss the differences between passive, assertive/confident, and aggressive communication styles.

Passive people are often afraid to speak up, speak softly, give in to others, and usually fail to express their feelings or needs. A passive communication style might sound like “It really doesn’t matter that much” or “Okay, that’s fine.”

Aggressive people might disrespect the other person and deny them the chance to express their opinions. An aggressive communication style might sound like “I’m right, and you’re wrong.”

Assertive people express their wishes, questions, and needs in a clear and direct way so that other people—like your doctor—are able to understand what it is they want and need.

Assertiveness is not the same as aggression. Assertiveness is about self-respect and expressing your opinions, whereas aggression is about disrespecting the other person and denying them the chance to express their opinions.

Assertive communication involves eye contact that demonstrates interest, a speaking voice at a level tone and knowing how, when, where, and what you choose to say.

“I” statements offer a way for you to let your healthcare team know if you feel rushed, confused, or threatened. It is important for the healthcare team to know how you’re feeling.

The following are all examples of assertive “I” statement messages:

• “I need to ask some questions.”
• “I feel confused.”
• “I prepared for this appointment and want to show you some of the changes I’ve tracked.”

You can build on this using the formula of “I feel _____ when ____ because ____,” as a way of expressing how you feel, speaking up when you feel that way, and why you feel that way.

Here are two examples:

“I feel frustrated when I ask a question on the portal and don’t get a reply because I am not sure whether I am supposed to take my next dose.”

“I feel really happy when you take the time to answer my questions because I leave feeling clear on what I’m supposed to do.”

It’s okay for you to ask questions and tell your healthcare team what you want like... if you want your doctor or nurse to speak slower, clearer, louder, or to use plain language.

The important truth is... taking charge of your health is an A.R.T. It doesn’t have to be complicated. Just Ask, Repeat, Talk. Doing those three things will help you get more out of all your interactions with your healthcare team.

Change is hard

You can all probably think of a change you've made in your life—or many changes—that took effort. Even just starting a change can be challenging.

There’s another part of the change process, though, that we don’t think about as much: How to maintain changes... how to stay consistent day after day. Maintaining change—sticking with it over time even when things get hard—is one of the real challenges of change.

Today the goal is to give you real-life strategies that are based on the newest science available, to help you make changes that stick.

Let’s explore a little bit about the process of change.

When we are thinking about change, it is normal for us to feel two ways about something – some good feelings, and some bad feelings.

Most people who need to make a change are unsure how to do it. We might want to look for a new job but also worry about leaving the one we currently have. We want to feel better with a new medicine but at the same time we don’t want to feel the hassles of taking it.

We see reasons to change and reasons not to. We want to change and we don’t want to change, all at the same time. We want two opposite things at the very same time. But it’s very normal to feel this way.

Despite the stickiness of this dilemma, we often decide to make a change, then we begin to do it, and then we take a step forward, followed by another step and another.

We can celebrate that we’ve made it over this initial uncertain hurdle, because that truly is a big win for us.

But this is often where things get even more tricky! Most changes require long-term attention and effort over time.

We will come to points in our life when we will have to decide if it is better to continue pursuing change or to accept what already is.

Here’s a non-trivial trivia question about change. Guess how many New Year’s resolutions are kept by February 1. Are you ready for this? Just 20% kept. 80% quit.

Today we will share with you five ways, based on the science of behavior change, to make change STICK. The word “STICK” is made up of letters to help you remember what is important to keep you on track and keep you motivated to succeed. We will now look at each of these strategies in more detail.

Let’s start with the ‘S’ in stick. First, imagine the change process as a road. Now, fast forward a few months or a year so that you are farther along that road. Now, suppose you turn around and look back on the change you’ve made, realizing that something got you off course. What would the obstacle or obstacles be? How might you avoid, escape, or overcome them? What can you do now, ahead of time, to develop a plan to deal with these obstacles and stay the course?

It’s a bit like having a fire escape plan. No one ever really expects a fire, but we all know it is a good idea to have an escape plan if there ever was one. You need to know where the exits are, and how to get to them.

The ‘T’ stands for ‘think of your why.’ Take a moment to think of your ‘why’—what really matters to you? What is most important in your life? How does this change connect with things that are most important to you?

By thinking of our why, we are reminding ourselves of the reasons we wanted to make this change and why we did it in the first place. We might also be reminding ourselves of what we have gained.

If we started a new exercise plan, we might think of the ways we’ve felt stronger lately and how that has made us feel about ourselves, such as: “I was able to carry those heavy grocery bags at one time. I felt strong,” or “I have been able to take a walk with my neighbor without stiffness or pain thanks to this medicine.”

Who is someone you might share your “why” with? Perhaps your doctor or a family member or friend? Sometimes simply saying things out loud, in the presence of someone you trust, can help us stay on track with changes.

The ‘I’ stands for ‘incorporating self-affirmations.’ Many times, we tend to look at what we are missing; what we have done wrong; how we have fallen short.

Self-affirmations are a way to change because they allow us to shift our perspective to what’s working—what strengths we have and what we can tap into when things become difficult.

Here are some words to describe strengths of successful changers. Take a look. Which ones do you think apply to you? In what ways are you like them? Where in your life have you particularly shown some of these qualities? What are some examples of how you show these positive qualities?

Everyone can find some words on this list that describe themselves.

The ‘C’ stands for ‘consider setbacks as learning experiences.’ With a setback, we imagine ourselves going back to square one. However, we actually start from a better place with helpful learnings gained from our last try—applying what was learned and making changes to correct what hadn’t worked before. You can ask yourself, “What positive lesson can I learn from this setback?”

This is because a setback can be a very good thing. It can be good because you now have more experience and more information that will help you move forward. And with more information, you are empowered. You learned what wasn’t working, and by incorporating what you learned, you will be better prepared for the next try.

Think about some of the setbacks you have faced as you attempted to stick with a change. When you were faced with a challenge, what lessons did you learn that will help you move forward?

The ‘K’ stands for ‘keeping your eye on progress rather than perfection.’ Changing a familiar behavior is usually not easy. Humans are not perfect, and if you happen to get off course, what matters is to get back on track, not allowing a mistake to become a disaster.

For example, imagine you set a goal for yourself such as “not eating sweets,” but then you find yourself on the couch with a pint of ice cream. And after the first bite you exclaim, “I ruined it all. I might as well stop this whole plan of not eating sweets!”

What’s happened is known as “the first rule violation”—something happens. And when it does, it can trigger a breakdown in self-control. Once the rule has been broken, it seems there is nothing to lose.

We tend to have unhelpful negative thoughts like, “You blew it,” “You just can’t do it,” “What’s the point in trying?”

Repeating statements like this to ourselves is not helpful. Feeling bad doesn’t make things any better.

Instead, we can think of some “comeback” replies to keep our eye on progress.

Rather than the all-or-nothing view, you can view it from the perspective of progress. A way of thinking about what positive steps have been made. Perhaps you put the spoon away and the ice cream back in the refrigerator and then say, “Now wait a minute…in the past I would have just eaten this whole thing….today I stopped myself,” or “What can I do to get back on track?”

So... these are the steps in STICK:

• Stay the course
• Think of your why
• Incorporate self-affirmations
• Consider setbacks and learning experiences
• Keep your eye on progress not perfection

And that is what you need to know when Making Changes Stick!

Goal setting is part of what we do every day. We set goals for our days, our careers, our health, and our lives in general. This session will help you learn ways to achieve the goals that matter to you.

Imagine throwing a dart without a target. Where would you aim? Attempting to make a change in our lives without a clear goal is like throwing a dart without a target. It’s very difficult to stay motivated on change unless a goal is focusing our efforts.

By setting a goal, we give ourselves a target to shoot for... and a reason to keep going.

Like so many things in life, there are skills we can learn to increase the chances of achieving our goals.

You can actually use the letters in the word GOALS to help you remember them. We will now look at each of these skills in detail.

‘G’ Stands for Grit.

Now and then, we all face challenges that make us feel limited on what we can achieve.

We may take a few steps and then change direction because it seems impossible. Yet to accomplish goals, especially long-term goals, we must stick with it even when things are hard.

Grit means having the courage to put one foot in front of the other. To fall nine times but get up 10 times! People who have grit practice more than others. However, they don’t just do the same thing over and over again. Instead, they practice the areas they’re weak in. This can often be painful and hard. After all, doing something that you’re not good at can be tiring.

You can build grit by adopting a habit of daily practice, learning as you go and, and most importantly, moving through the challenging parts.

Sometimes it can even help to say out loud, “This is so frustrating because I’m challenging myself.”

‘O’ Stands for Outcome.

What is the specific outcome you want? This is more than the goal itself. IT’S WHAT YOU HOPE THAT GOAL GETS YOU. For example, a goal to take your medication everyday as prescribed could result in an outcome of having more freedom and less symptoms that get in the way.

A common mistake when setting a goal is to only think about how great life will be after accomplishing it without considering what is currently holding us back.

A helpful skill is to think of the outcome you want and create a plan that will get you through any challenges that stand in your way.

‘A’ Stands for Achievable.

Think about the skills or abilities that are needed to achieve your goal. How can you make it practical and within reach? For example, reading one book per month is probably achievable. Becoming a professional NBA player may not be... because you may not have the ability or skill to achieve that goal. You could set a goal to practice basketball one hour per day, though!

You could set a goal to practice basketball one hour per day, though!

How will you know your plan is working? What are the things you (or others) could see that will let you know you are closer to achieving your goal?

Think of the way your smartphone tracks your steps and how you can compare the steps you took today to yesterday’s. You can compare week to week, or even month to month. Is it something within your control? Is it realistic? What is the time frame you are wanting to achieve this goal in?

Rather than just thinking “I want to be healthy,” think of how you can frame it in a way that is time bound and within your control. For example, “Starting on Monday, after work, I will begin exercising 20 minutes a day, three times per week.”

A specific question you can ask to determine if your goals are achievable is to fill in the blank: I will know my plan is working if “blank.” What are the specific indicators that show you, and others ,that you are closer to reaching your goal?

‘L’ Stands for Link.

Think again about the goal you want to achieve. Now think of something you really like to do that you could bundle with that goal. Perhaps it’s scrolling through social media posts, playing a game on your phone, or watching Netflix. Linking steps toward your goal with something you like is a way of doing what you want to do AND what you should be doing to achieve a specific goal.

The trick is that you must do the two things together. One shouldn’t happen without the other. Unlike doing something fun as a reward AFTER completing a task you’re not so fond of, this behavioral practice ties together something you like with completing necessary tasks.

So how does it work? If your goal is to spend an hour a day organizing and doing household chores so your weekends can be more relaxing.

You might bundle a not so fun task like laundry with watching your favorite Netflix show. Or maybe you’re trying to finish a paper and you decide to bundle this not so fun task with...a fancy coffee drink.

But there’s one important catch. In order to stick to the plan and make this work, you have to have some self-control. If you reward yourself without doing what you should be doing, such as watching Netflix without doing laundry, the system will begin to fall apart.

‘S’ Stands for Steps.

Larger goals can be broken down into smaller goals. Small steps together equal a giant leap. The trick is to break goals down into the smallest, most manageable steps you can.

Think about someone who wants to go on a long run but is out of shape. While it may be tempting to want to start on the run and simply see how far you can go, it can be more helpful to start small and track your progress.

Perhaps start by getting running shoes. Another step may be running around the block after dinner. Then you might build up to running around the block two times the next day and three times the next. This allows you to check off each goal along the way, which can keep you motivated. You can also reflect on where you’ve been by documenting your progress and sharing with friends or family.

So, to recap, here are the easy-to-remember skills in G.O.A.L.S.:

• Grit
• Outcome
• Achievable
• Link, and
• Steps

And using them is how to achieve the goals that matter to you.

R.U.L.E.S. for Empowering Problem-Solving

When someone you’re caring for shares a problem they’re having it’s tempting to try and solve it. We want to make the person we care for feel better. But when you tell them what they “should” do it can kick off a frustrating cycle. They may respond by pointing out why your solution won’t work. So, you offer another one. And then they say that won’t work either.

In this cycle, your loved one is becoming frustrated because they feel like they’re not being heard or understood. And you are becoming frustrated because your solutions are not being well received.

Here’s what can help break this cycle. People are more likely to be successful when they come up with and commit to their own solutions. Even if a loved one seems stuck about a challenge they’re struggling with, they still have ideas of their own that can be tapped into. By acting on five RULES you can help them problem solve their own solutions that work best for them.

The first rule is R: Resist the need to fix. The desire to fix is normal. But don’t race ahead to give advice, agree or disagree, or even ask a lot of questions. In fact, many people think they’re being a good listener by asking questions. But asking questions too early can actually steer the person away from what they are trying to tell you. Instead, hold back… even if you think you already have the perfect solution.

The next rule is U: Understand the problem your loved one is trying to solve.

Understanding comes from good listening and says “You are important to me.” Think about listening to understand like being a trampoline. Let the person speaking bounce ideas off of you.

With listening to understand give your full attention. Don’t do anything else while you’re listening and avoid thinking about what you are going to say next. Be curious. Focus on trying to find out their perspective. Don’t agree or disagree. Listen actively. Say what you heard. This is not repeating exactly what they said. It’s offering your understanding of what the person might mean.

The next rule is L: Learn about their ideas for how to solve the problem. Ask open-ended questions that encourage thinking of possible solutions like…

• “There are probably a lot of good solutions.”
• “Which ones can you think of?”
• “What information would help you make a decision?”
• or, “What do you think you should do at this point?”

As they’re thinking about options, hold off on sharing judgments. But if you have a concern that needs be shared, a better response is saying something like “I’m not sure what you’ll think about this, but one concern I have about that idea is…”

In this way, you’re sharing your thoughts while you’re understanding they may have a different opinion.

When you believe it’s time to move forward with a decision, ask...

“Is this the solution you want to try?” or “Of the solutions we’ve talked about, it seems like this is the one you’re most interested in.” If there’s agreement, it’s a good signal to move to…

The next rule, E: Empower. Empowering involves helping the person develop a step-by-step plan of how they will carry out their solution and when they will do it.

You might ask:

• “Where will you begin?”
• “How could you make this happen?”
• or “What needs to happen next?”

Once a plan is developed, help lock it in with action-focused questions, like…

• “Are you prepared to do this?”
• “Will you do this?”
• or “Do you intend to do this  today?”

Their “yes” leads to the final rule, S: Support.

This is about specific ways you can help. But don’t assume you already know how. Ask…

• “What are ways I can help?”
• “How might I support you in this?”
• or “What ideas do you have for how I can be helpful as you begin?”

If they don’t have answers, you might say:

• “One way that might be helpful is (blank). I wonder what you think about that?”
• or “What would you think about me helping by doing (blank)?”

And remember, part of showing support is celebrating progress along the way.

This can build confidence and help the person stay on track.

So, the next time you feel the need to fix bubbling up inside of you – remember the RULES – to help empower your loved one to find their own solutions that work best for them.