VIDEOS AND RESOURCES

Resources to Support You Every Step of the Way


Find important tools to help you or a loved one on UPLIZNA® (inebilizumab-cdon).

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Kelly, Narrator: A new diagnosis can make you feel alone. Outside of just processing the change to your life, understanding everything that goes into your treatment can feel overwhelming.

Amgen By Your Side is a patient support program designed specifically for someone prescribed a Amgen medication. Our dedicated team is your partner, committed to providing non-medical, personalized support so you can start and continue treatment as your doctor recommends.

Once you are prescribed a Amgen medication, you will work with your doctor to be enrolled into Amgen By Your Side and get matched with a Patient Access Liaison, or PAL. Or in some cases, a clinical nurse educator – a CNE.

Lindsey (PAL) talking to Khash: … I’m available to help you as you need for anything that might come up. I’m basically your advocate, your cheerleader, your friend. I’m here to support you through the entire journey.

Khash: My primary care physician said, “We’re going to have a Patient Access Liaison get in contact with you to discuss it further with you, and tell you all the pluses, minuses and all that stuff.” Lindsey, really took the time to explain it all to me, including the commitment it’s going to take on my side to get this done.

Kelly, Narrator: A PAL is your partner to support and champion you while accomplishing your treatment goals. Some of the ways your PAL can support you include:
- Learning about insurance coverage and the approval process
- Understanding potential costs or cost assistance options
- Sharing additional resources, connect to advocacy groups, or connect with others if interested

Roxie: I did work with the Patient Access Liaison, more commonly known as PALs, and she kept in touch with me. I was really worried about insurance and about out-of-pocket cost. Although I was willing to do whatever it took. She checked out my insurances and I am so blessed because it was 100% covered.

Randi: They assigned me a Patient Access Liaison after I was approved for treatment and just helped guide me through the process as far as what to expect, the process that I was going to go through and just to be there for general support for me.

Melanie: She really took the time to explain everything and go through it and has been there for me for every single question ever since.

Kelly, Narrator: With everything you and your caregivers have going on, it can be difficult to fit treatment into your routine. Your PAL can help you understand what to expect at the start of treatment, how treatment can fit into your routine and send reminders to help you stay on track.

Carol (PAL): I want them to understand that I will be a point person for them. First and foremost, I’m there to listen and also let them know I’m there to support them through the process. And ultimately to empower them.

Latoya: They remind you of things that you typically forget. Even like when it comes to testing kits, you know. I was able to work out a plan. The PAL also will also make sure, like when it’s time to renew insurance, that at the end of the year you know, they shoot you a text message to call. So I think they’re a great resource. They really are.

Melanie: They call me to do refills earlier than I need them so that I don’t run out of the medication.

Carol (PAL): We don’t want patients to feel that they’re just out there alone and floating in the space of the unknown. They can reach out to us at any time. We’re always available to them.

Kelly, Narrator: The Amgen By Your Side team can also help you become more comfortable with your diagnosis, even visiting to teach you hands-on how to take your medication and help you find medicine in case of an emergency.

Jerry (CNE): As a Clinical Nurse Educator my responsibility and my job is to make sure that our patients are well taken care of and that their needs are met. We also have communication with their primary doctors to make sure that they know and they are up-to-date in their treatment.

Shannon (CNE): I teach them about lifestyle modifications needed to stay healthy, a lot of disease state education.

Kelly, Narrator: We can also help connect you with a peer mentor, who are other Amgen patients that are going through a similar experience.

Randi: I may talk to three or four newly diagnosed patients a week. They want to know what the experience was like for me.

Kelly, Narrator: Amgen By Your Side also has many other resources available to patients and caregivers through our website, AmgenByYourSide.com. There you’ll find information about enrollment, treatment cost assistance options, treatment planning, and many other resources to assist you during your treatment experience.

In the end, Amgen By Your Side is designed to be just that …. by your side.

Melanie: I was so happy because I was so scared. She was there from the very beginning, I am trying to manage this disease by myself, but I’m not really by myself because I have these people in my corner that are available to me at any time.

Roxie: After being so dismissed and feeling like I was doing this by myself, it was so helpful to have somebody who understood, who knew it. It gave me hope and it let me know that at some point, I was going to be able to go on with my life and not be held back by this anymore.

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I was assigned a Patient Access Liaison. Her name is Dylesha and when she first reached out to me, she let me know who she was and what her job entailed as far as helping me or being there for me. After talking with her and I shared with her some needs that I had, some things that I needed to help me in my bathroom. So, she actually gave me some phone numbers to different foundations to see if they might be able to assist me with those items that I need for my restroom. And I certainly appreciate her doing that for me. I look forward to continuing working with her and reaching out to her whenever I have any questions or concerns about my UPLIZNA or NMOSD.

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I think living with NMOSD, and having a provider that you have confidence in, one that you feel comfortable with, telling that provider anything, being able to speak to your provider, is important. You've got to be able to be comfortable with your provider. My advice is to be very honest and very open with what you're feeling, whether it be on a physical aspect or mental aspect. I now have another neurologist, who is absolutely amazing. He absolutely listens to everything that I say. One of the other things is, he'll make me walk from one mark to another, and he times me, and he'll be like, "Oh my God, that's amazing. You did this faster this time." To have a provider in your life that you are comfortable with, who is there for you, who will be like, "Oh my God, that's amazing. That's a great job. I'm impressed. You've actually come a lot farther."

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Today, we’re going to talk about how you can care for others while also taking care of yourself. Here’s what we mean. 

Think about a time when a friend of yours was struggling. How did you respond in that situation? Now, think about a time when YOU were struggling. How did you respond in that situation… to yourself? There was likely a difference. We tend to be much more compassionate with our friends while being tougher on ourselves. How can we treat ourselves with that same gentleness and care?

In your role as a caregiver, it can be easy to forget to look after yourself as you put others needs first. The way to be a resilient caregiver is with self-compassion… treating yourself the same way you would treat a friend.

Now, what prevents us from self-compassion is the harsh critic whispering in our head. It says things like …

“You’ll never be able to do this” or

“You always mess this up.”

With self-compassion, you replace those mental judgments with thoughts a friend would comfort you with. Like …

I see you’re doing your best.”

“The people you care for are in good hands with you.”

Or… “You’re a strong person for dealing with this for so long.”

Another way to practice self-compassion is with journaling. It doesn’t have to be formal. You can even just write in your phone. However you do it, use the three parts of self-compassion to process what you’re experiencing as a caregiver. 

1) Self-Kindness

Write kind, understanding words of comfort to yourself:

It’s okay. You made a mistake. But it wasn’t the end of the world.”

2) Common Humanity

Write how the things you’re going through are connected to the larger human experience:

Everyone makes mistakes. It’s how we learn.”

3) Mindfulness

Write about how you feel (embarrassed, sad, ashamed, or frightened) in a non-judgmental way:

I got angry, overreacted, and was embarrassed afterwards.”

If you change the tone of your inner voice and journal regularly, self-compassion will make you more resilient and able to bounce back from life’s challenges.

And that’s important. Because the opportunity to be a caregiver may be one of the most fulfilling things you ever do.

But…to KEEP doing it, it’s important to be intentional about caring for yourself in the process.

Leer la Transcripción

Hoy hablaremos de cómo puede cuidar de otras personas y, al mismo tiempo, cuidar de sí mismo.Veremos de qué se trata esto.

Piense en una ocasión en la que un amigo pasó por un momento difícil. ¿Cómo respondió usted ante esa situación? Ahora piense en una ocasión en la que USTED pasó por un momento difícil. ¿Cómo respondió en esa situación... para consigo mismo? Probablemente haya respondido distinto. Solemos tener mucha más compasión con nuestros amigos y ser más severos con nosotros mismos. ¿Cómo podemos tratarnos con esa misma gentileza y cariño?

En nuestro rol de cuidadores, cuando ponemos a otras personas en primer lugar, nos olvidamos de cuidar de nosotros mismos. La manera de ser un cuidador resiliente es practicando la autocompasión... tratarse a uno mismo de la misma forma que trataría a un amigo.

Ahora, lo que nos impide practicar la autocompasión son las severas críticas que nos dan vueltas por la mente. Pensamos en frases como... “Nunca serás capaz de hacer esto” o “Siempre lo arruinas”.

Mediante la autocompasión, reemplazas las críticas mentales por pensamientos que un amigo utilizaría para consolarlo a usted. Por ejemplo: “Veo que estás haciendo lo major posible”. “Las personas que cuidas están en buenas manos contigo”. O... “Eres una persona fuerte por enfrentarte a esto durante tanto tiempo”.

Otra forma de practicar la autocompasión es mediante la escritura. No tiene que ser algo formal. Incluso puede escribir en su teléfono.

Sin importar cómo lo haga, utilice las tres partes de la autocompasión para procesar lo que está experimentando como cuidador.

1) Bondad con usted mismo Escriba palabras bondadosas y comprensivas de consuelo: “Está bien. Cometiste un error, pero no es el fin del mundo”.

2) Humanidad común Escriba cómo sus sentimientos se conectan con la experiencia humana en general: “Todos cometemos errores. De esta forma aprendemos”.

3) Conciencia plena Escriba cómo se siente (siente vergüenza, tristeza, pena o miedo) sin juzgarse: “Me enojé, exageré y luego sentí vergüenza”.

Si cambia el tono de su voz interna y escribe con frecuencia, la autocompasión lo hará más resiliente y podrá recuperarse de los desafíos de la vida.

Y eso es importante. Porque la oportunidad de ser un cuidador puede ser una de las actividades más gratificantes que haga.

Pero... para SEGUIR haciéndolo, es importante tener la intención de cuidar de uno mismo en el proceso.

Muchas gracias.

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Narrator: If you’ve recently been prescribed a Amgen medicine, there are a few steps to the insurance approval process. This will look slightly different for each patient and the time it may take to get approval can vary.

Narrator: Fortunately, Amgen By Your Side, a patient support program designed specifically for you, will be there “by your side” every step of the way, to make the process as smooth as possible.

Narrator: When your health plan decides whether to cover a Amgen medication, their review process may include several steps.

Narrator: First – a benefits investigation. After your doctor prescribes your medicine and you provide permission through a patient consent form, a Amgen By Your Side team member will contact your health plan to review your coverage.

Your Patient Access Liaison, or PAL, or, in some cases, a Clinical Nurse Educator, a CNE will call you with information on the progress of your benefits investigation and review:

Whether the medicine is covered by your policy and prior authorization requirements.

Your estimated out-of-pocket costs and financial assistance that may be available to you.

Narrator: Second – Prior Authorization or “PA”. While often needed, sometimes a “PA” may not be required. If a Prior Authorization IS required for you, this is a process your doctor must complete, describing the reasons you should be prescribed the medicine and why the costs should be covered.

Narrator: Third – Health Plan Decision – After receiving all required information, your health plan will determine whether it will cover your Amgen medicine. You and your doctor’s office should receive a written decision from the health plan.
If your health plan denies coverage, you can work with your doctor’s office to appeal this decision. The Amgen By Your Side Team can educate you and your doctor about the process.

Narrator: Throughout the process, the Amgen By Your Side team will provide support by:

  • Contacting your health plan to review your insurance coverage
  • Providing your doctor with education on any requirements or PA decisions
  • Going over alternative options you may use to access your medicine while the insurance review is underway
  • Staying in touch with you throughout the process to keep you up to date on the status of the review

Narrator: For more information on the insurance approval process and the services available to patients and healthcare providers from Amgen By Your Side, visit Amgenbyyourside.com.

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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.

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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 as learning experiences
  • Keep your eye on progress not perfection

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

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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, 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!

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.

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

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.

Preguntar, Repetir, y Conversar – ÉSTAS son las TRES destrezas que le brindan una manera sencilla de recordar cómo puede entender y poner en práctica la información que reciba de su médico.

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.

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?

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.

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.

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.

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.

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.

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.

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.”

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.

¡Gracias!

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Cómo mejorar la comunicación con su médico

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

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

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.”

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.

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.”

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.

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.

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.

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...”

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.

¡Gracias!

IMPORTANT SAFETY INFORMATION

What is UPLIZNA?

UPLIZNA is a prescription medicine used to treat adults with neuromyelitis optica spectrum disorder (NMOSD) who are anti-aquaporin-4 (AQP4) antibody positive.

It is not known if UPLIZNA is safe or effective in children.

Who should not receive UPLIZNA?

You should not receive UPLIZNA if you have:

  • had a life-threatening infusion reaction to UPLIZNA.
  • an active hepatitis B virus infection.
  • active or untreated inactive (latent) tuberculosis.

Before receiving UPLIZNA, tell your healthcare provider about all of your medical conditions, including if you:

  • have or think you have an infection.
  • have ever taken, currently take, or plan to take medicines that affect your immune system, or other treatments for NMOSD. These medicines may increase your risk of getting an infection.
  • have or have ever had hepatitis B or are a carrier of the hepatitis B virus.
  • have or have ever had tuberculosis.
  • have had a recent vaccination or are scheduled to receive any vaccinations. You should receive any required vaccines at least 4 weeks before you start treatment with UPLIZNA.
  • are pregnant or plan to become pregnant. It is not known if UPLIZNA will harm your unborn baby. Females should use birth control (contraception) during treatment with UPLIZNA and for 6 months after your last infusion of UPLIZNA.
  • are breastfeeding or plan to breastfeed. It is not known if UPLIZNA passes into your breast milk. Talk to your healthcare provider about the best way to feed your baby if you receive UPLIZNA.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

What is the most important information I should know about UPLIZNA?

UPLIZNA may cause serious side effects, including:

Infusion reactions. UPLIZNA can cause infusion reactions that can be serious or may cause you to be hospitalized. You will be monitored during your infusion and for at least 1 hour after each infusion of UPLIZNA for signs and symptoms of an infusion reaction. Tell your healthcare provider right away if you get any of these symptoms:

  • headache
  • nausea
  • sleepiness
  • shortness of breath
  • fever
  • muscle aches
  • rash

If you develop an infusion reaction, your healthcare provider may need to stop or slow down the rate of your infusion and treat your symptoms.

Infections. Infections can happen during treatment with UPLIZNA. Tell your healthcare provider right away if you have an infection or get any of these symptoms:

  • painful and frequent urination
  • nasal congestion, runny nose, sore throat, fever, chills, cough, body aches
  • UPLIZNA taken before or after other medicines that weaken the immune system may increase your risk of getting infections.
  • Hepatitis B virus (HBV) reactivation. Before starting treatment with UPLIZNA, your healthcare provider will do blood tests to check for hepatitis B viral infection. If you have ever had hepatitis B virus infection, the hepatitis B virus may become active again during or after treatment with UPLIZNA. Hepatitis B virus becoming active again (called reactivation) may cause serious liver problems, including liver failure or death. Your healthcare provider will monitor you if you are at risk for hepatitis B virus reactivation during treatment and after you stop receiving UPLIZNA.
  • Progressive Multifocal Leukoencephalopathy (PML). PML may happen with UPLIZNA. PML is a rare brain infection that leads to death or severe disability. Symptoms of PML may get worse over days to weeks. Call your healthcare provider right away if you get any of these symptoms:
  • weakness on one side of the body
  • loss of coordination in your arms and legs
  • changes in your vision
  • changes in thinking or memory
  • confusion
  • changes in your personality
  • Tuberculosis (TB). TB is caused by an infection in the lungs. Before starting treatment with UPLIZNA, your healthcare provider will check to see if you are at risk for getting TB or have ever had TB.
  • Vaccinations. Certain vaccines, called “live” or “live attenuated” vaccines, are not recommended in people receiving UPLIZNA. Talk to your healthcare provider before receiving any vaccinations. If you have a baby and you were receiving UPLIZNA during pregnancy, it is important to tell your baby’s healthcare provider about your UPLIZNA use so they can decide when your baby should receive any vaccine.

See “What are the possible side effects of UPLIZNA?” for more information about side effects.

How will I receive UPLIZNA?

  • UPLIZNA is given through a needle placed in a vein (IV or intravenous infusion) in your arm.
  • Before treatment with UPLIZNA, your healthcare provider will give you a corticosteroid medicine, an antihistamine, and a fever prevention medicine to help infusion reactions become less frequent and less severe. See “What is the most important information I should know about UPLIZNA?”
  • Your first dose of UPLIZNA will be given as 2 separate infusions, 2 weeks apart.
  • Your next doses of UPLIZNA will be given as one infusion every 6 months.
  • Each infusion will last about 1 hour and 30 minutes. After each infusion, you will be monitored by a healthcare provider for at least 1 hour.

What are the possible side effects of UPLIZNA?

UPLIZNA may cause serious side effects, including:

  • See “What is the most important information I should know about UPLIZNA?”
  • low blood cell counts. UPLIZNA may cause a decrease in some types of blood cells. Your healthcare provider will do blood tests to check your blood cell counts.

The most common side effects include urinary tract infection and joint pain.
These are not all the possible side effects of UPLIZNA.

Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

IMPORTANT SAFETY INFORMATION

What is UPLIZNA?

UPLIZNA is a prescription medicine used to treat adults with neuromyelitis optica spectrum disorder (NMOSD) who are anti-aquaporin-4 (AQP4) antibody positive.

It is not known if UPLIZNA is safe or effective in children.

Who should not receive UPLIZNA?

You should not receive UPLIZNA if you have:

  • had a life-threatening infusion reaction to UPLIZNA.
  • an active hepatitis B virus infection.
  • active or untreated inactive (latent) tuberculosis.

Before receiving UPLIZNA, tell your healthcare provider about all of your medical conditions, including if you:

  • have or think you have an infection.
  • have ever taken, currently take, or plan to take medicines that affect your immune system, or other treatments for NMOSD. These medicines may increase your risk of getting an infection.
  • have or have ever had hepatitis B or are a carrier of the hepatitis B virus.
  • have or have ever had tuberculosis.
  • have had a recent vaccination or are scheduled to receive any vaccinations. You should receive any required vaccines at least 4 weeks before you start treatment with UPLIZNA.
  • are pregnant or plan to become pregnant. It is not known if UPLIZNA will harm your unborn baby. Females should use birth control (contraception) during treatment with UPLIZNA and for 6 months after your last infusion of UPLIZNA.
  • are breastfeeding or plan to breastfeed. It is not known if UPLIZNA passes into your breast milk. Talk to your healthcare provider about the best way to feed your baby if you receive UPLIZNA.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

What is the most important information I should know about UPLIZNA?

UPLIZNA may cause serious side effects, including:

Infusion reactions. UPLIZNA can cause infusion reactions that can be serious or may cause you to be hospitalized. You will be monitored during your infusion and for at least 1 hour after each infusion of UPLIZNA for signs and symptoms of an infusion reaction. Tell your healthcare provider right away if you get any of these symptoms:

  • headache
  • nausea
  • sleepiness
  • shortness of breath
  • fever
  • muscle aches
  • rash

If you develop an infusion reaction, your healthcare provider may need to stop or slow down the rate of your infusion and treat your symptoms.

Infections. Infections can happen during treatment with UPLIZNA. Tell your healthcare provider right away if you have an infection or get any of these symptoms:

  • painful and frequent urination
  • nasal congestion, runny nose, sore throat, fever, chills, cough, body aches
  • UPLIZNA taken before or after other medicines that weaken the immune system may increase your risk of getting infections.
  • Hepatitis B virus (HBV) reactivation. Before starting treatment with UPLIZNA, your healthcare provider will do blood tests to check for hepatitis B viral infection. If you have ever had hepatitis B virus infection, the hepatitis B virus may become active again during or after treatment with UPLIZNA. Hepatitis B virus becoming active again (called reactivation) may cause serious liver problems, including liver failure or death. Your healthcare provider will monitor you if you are at risk for hepatitis B virus reactivation during treatment and after you stop receiving UPLIZNA.
  • Progressive Multifocal Leukoencephalopathy (PML). PML may happen with UPLIZNA. PML is a rare brain infection that leads to death or severe disability. Symptoms of PML may get worse over days to weeks. Call your healthcare provider right away if you get any of these symptoms:
  • weakness on one side of the body
  • loss of coordination in your arms and legs
  • changes in your vision
  • changes in thinking or memory
  • confusion
  • changes in your personality
  • Tuberculosis (TB). TB is caused by an infection in the lungs. Before starting treatment with UPLIZNA, your healthcare provider will check to see if you are at risk for getting TB or have ever had TB.
  • Vaccinations. Certain vaccines, called “live” or “live attenuated” vaccines, are not recommended in people receiving UPLIZNA. Talk to your healthcare provider before receiving any vaccinations. If you have a baby and you were receiving UPLIZNA during pregnancy, it is important to tell your baby’s healthcare provider about your UPLIZNA use so they can decide when your baby should receive any vaccine.

See “What are the possible side effects of UPLIZNA?” for more information about side effects.

How will I receive UPLIZNA?

  • UPLIZNA is given through a needle placed in a vein (IV or intravenous infusion) in your arm.
  • Before treatment with UPLIZNA, your healthcare provider will give you a corticosteroid medicine, an antihistamine, and a fever prevention medicine to help infusion reactions become less frequent and less severe. See “What is the most important information I should know about UPLIZNA?”
  • Your first dose of UPLIZNA will be given as 2 separate infusions, 2 weeks apart.
  • Your next doses of UPLIZNA will be given as one infusion every 6 months.
  • Each infusion will last about 1 hour and 30 minutes. After each infusion, you will be monitored by a healthcare provider for at least 1 hour.

What are the possible side effects of UPLIZNA?

UPLIZNA may cause serious side effects, including:

  • See “What is the most important information I should know about UPLIZNA?”
  • low blood cell counts. UPLIZNA may cause a decrease in some types of blood cells. Your healthcare provider will do blood tests to check your blood cell counts.

The most common side effects include urinary tract infection and joint pain.
These are not all the possible side effects of UPLIZNA.

Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.