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© 2019 Hashimoto's Encephalopathy SREAT Alliance

Preparing For Your Doctor's Appointment

 

How To Get the Most Out of Your Doctor's Visit by Neuropsychologist Bonnie Kate Dewar

Note: This was a presentation Dr. Dewar made to The Encephalitis Society in November of 2013

called "Getting the Most Out of Your Doctor's Appointment." It is published in our book

Understanding Hashimoto's Encephalopathy: 2016 Edition.

 

Concentration: "Many people have difficulty or changes with information processing and with concentration. So it may be difficult to think quickly and get things out. You know what words to use, but it is not fast enough with what is being said. Similarly...when someone is speaking very quickly, it can just be information overload. It can be difficult to focus through a 10 minute, 30 minute, 1 hour consultation. Sometimes, it can depend on the time of day as well. This can be due to the effects of the encephalitis, medication, mood...but if someone has a 4:30 appointment in the afternoon when they are generally very tired, they are not going to take much in at that time. This can be quite a significant barrier to getting the most out of that meeting."

Memory Issues: "Of course, if it's difficult to remember the information that is being said to you, it's going to be hard to get out the answers that you want or the information that you want. If the specialist asks, 'Well how have you been?' It may be very difficult to remember what happened in the hospital. That may be difficult because of your memory problems. Even coming and sitting down in the chair, already there are these uncertainties. It puts the person in a difficult or helpless position because of memory difficulties."

Letting your doctor know about your difficulties: "It is a very brave step acknowledging to the clinician that you have difficulties. Setting the groundwork by saying, 'I have memory problems and this is what I need to do.' And not being apologetic about it. Many times, doctors have their own agenda so it can be tricky."

Taking notes: "Even with your notes, your may have difficulty remembering what to ask or remembering what has happened in the past. Remember to take notes not just about the questions you want to ask but also of responses."

Advocate: "Having someone there with you, can help you with the challenge of complex thinking." (Dr. Dewar explained that whether it is the person recovering from encephalitis, their caregiver or parent, someone must be able to ask questions and get their point across. She said that although most people tend to think that because the doctor is a specialist, still, no one knows you or your condition like you or your caregiver does).

Ask for clarification: "This is so you don't just have random notes where the information doesn't really make sense. Finding a way to clarify the message that was in the meeting, clarify the plan and clarify any action points. So not just writing notes but clarifying them."

Smartphones: "Most smartphones have a 'dictaphone' (recorder app) on them so you can actually record. Hopefully the doctor that you are seeing will appreciate the fact that you have memory conditions." (HESA recommends asking the doctor for permission first).

Finding the right words: "It may be that the person has a difficulty understanding the words or concepts of what is said to them. Expressing yourself and finding the exact words ot use is quite a common difficulty. It's very important if you have a set, structured time to ask your questions...so you don't feel pressured."

Medical jargon: "I think most professionals are guilty of using (medical) jargon at one time or another which can further hinder communication."

Complex thinking: "Another area of cognitive change is 'complex thinking' (executive functioning)." (Doctor Dewar explained that a person may have understood what as being said and remember the idea of the doctor's visit and what was being communicated in the past. However, after encephalitis, this can all be changed and more difficult.)

Getting organized: "Making a plan during the session, putting the pieces together, the steps of how we are going to achieve something, and really getting it organized. So who is going to do what? You think, 'You're my doctor, you've got ten minutes with me.'"

Emotions: "During these visits with your doctors, the conversations can be emotionally charged and emotions can well up and be difficult to control. This can be appropriate for the conversation at that time, but if it is something (that) hinders getting the most out of that important appointment, then finding a way to be aware of that and to monitor your levels will help keep it in check for that moment- if it is appropriate."

When feeling anger and frustration: "Not having answers and finding yourself in situations that you don't want to be in. Yet here you have your appointment, is this the chance to actually vent some of that frustration? If you're not getting answers, not getting services and someone suddenly begins to ask you about them--are they in the firing line-- rightly or wrongly?"

"The drive to want to have your say and venting your frustration and anger may get in the way with your doctor. I tell my clients to know where you are on a scale from 1, which is asleep to 10- where you are throwing things. What is manageable and more appropriate point for you? Is it about a 4 or 5? (Dr. Dewar suggests checking this before and during your appointment). If your anger is creeping up, is that a time then to take a deep breath or listen to some music or step out and come back? Managing that anger and agitation is important."

Depression: If a person has to go to an "important appointment where they need to get or share information and they feel quite low and flat and withdrawn, they may not be very interested...as part of their mood they don't really care (what is going on). So it might be hard to 'take up the reigns' and get up and ask important questions. Feeling low in mood can and of itself have an impact on your ability to think, remember things and take in information and focus on things."

Anxiety or worry: "It can interfere with clear thinking if you are preoccupied or very worried about something, then in an area when you have to actually focus on something else it might be very difficult. Sometimes there is a strong need to find an answer to that particular worry which might or might not fit in with the purpose of that appointment. With worry, if there are a lot of racing thoughts in your head building up, a cycle of what's going to come from that appointment, compounded by memory difficulties and cognitive changes you won't understand, you need to be mindful of that cycle of increasing anxiety, an also knowing at what point it's sort of spinning out of control. Using those distraction tools/exercises is important."

"When your mind goes blank for example and you can't think of anything to say at that moment you can get quite anxious. For example your breathing changes, you can get pins and needles or get lightheaded. Your body goes into fight or flight response and you want to run out the door. So try deep breathing to calm the body down. Your are telling your body, 'it's going to be okay.' This will hopefully slow down your thinking and anxiety a bit."

Doctors are not always knowledgeable in encephalitis: "We are used to going to our doctor and thinking, 'they are the experts and I should be listening to them,' With encephalitis, you are your own expert of your condition and of yourself. It may also be that doctor doesn't have experience or have recent experience with encephalitis or with recovery once you are out of the initial stages...you having this life-changing illness, but actually trying to take that ownership for your own treatment can be really hard. It may help getting family, friends or society to support you in that."

  • Before your appointment beginsKnow ahead of time: What kind of appointment, can give you more of a feel for what is achievable at your appointment.

  • Do not wait until last minute: Write down notes on what it is you want to get out of the appointment.

  • Details: what time it is, where it is, and making a plan of how to get there

  • Bringing someone with you: This can help with moral support or memory support. That person may even have questions themselves.

  • The waiting room: The busy waiting room or long wait may cause anxiety and affect the cognitive and emotional changes you are going through. This may make it difficult to wait. Waiting like this can increase agitation. Music, a book, deep breaths can help. Being mindful of where you are on your anger scale at this point is important.

  • Bring snacks and drinks: There is nothing worse that waiting a long time and your stamina is dipping because you are hungry or thirsty.

  • Communication: Checking in with yourself on you anger and frustration levels while waiting for your appointment and while in your appointment. For many, this is something that tends to run away with you. When you are being assertive, make sure it is in an appropriate manner. People with encephalitis can also find that they can talk a lot and lose track of what they are saying, so remember you have to keep a time schedule at your appointment. 

  • Sleep: Try to get a good night sleep the night before.