Tuesday, February 23, 2010

Coming home + aphasia communication tips


We head home tomorrow, big news! Lots of packing and planning and not much time to write now, but my amazing sister Lisa King has written the message posted below. This same message went out to our Lotsa Helping Hands web community. At the end of her message you'll find some more formal tips about communicating with someone who suffers aphasia and has communication difficulties. Turns out more people suffer from aphasia than even Parkinson's disease but aphasic adults have trouble standing up for themselves (because of communication) so it's kind of an unknown realm to many (including me until 3.5 weeks ago). Believe me this whole reality is BRAND new, so please don't be nervous to be with us. We're the same people deep down -- I'm just hugely pregnant and Phil has trouble speaking...otherwise -- it's still Phil and Lara. Please just read the information below if you've got time or are deeply interested. Lisa, Sarah Bostick, my step-dad Larry, and a whole host of incredible people have been behind the scenes ensuring we land in a safe, colorful, beautiful nest. THANK YOU!

We'll see you on the flip side! Goodbye saguaro cactus, javelinas, prickly pear, desert land, hospitals and cottonwoods -- hello salty air, our amazing friends, east coast grittiness -- and COMMUNITY filled with love.

"Dear friends, family and colleagues of Phil and Lara,

As many of you know, Phil and Lara are making their way home to Portland tomorrow. This will be a very big step for both of them, requiring all their physical and emotional strength, as well as any support you can provide. While I know many of you are eager to greet them in person, we respectfully ask that you follow the guidelines in this email to help make this transition as smooth as possible for both of them. Phil has undergone a serious brain injury and is in a critical phase of healing which requires extraordinary amounts or rest and rehabilitation. Lara is at the end of her first pregnancy and is also learning how to exist with Phil in this new world. The bottom line: they both need our help, but they also need their privacy and some rest to remain whole.

We have set up a schedule through the end of March on the Lotsa Helping Hands website (if you haven't joined yet, here is the link to our web community: http://www.lotsahelpinghands.com/c/622496/login/ As you will see, visits and meal drop-offs are listed in green, and you can volunteer for either or both. Please sign up for these visits rather than dropping in unannounced. Phil will be keeping to a fairly rigorous therapy schedule and surprise visits can also be unintentionally stressful and energy-draining.

These "sessions" are meant to help Phil normalize into life has he knew it. Feel free to bring along a musical instrument, photos to help Phil remember shared friends/family, or possibly plans to take a short walk or visit a coffee shop together. Don't feel obligated to have an activity, though. Just sitting and having a conversation is welcome and appreciated, and might be all Phil is up for at that moment. As for meal drop-offs, most of you know Phil and Lara are devoted to healthful living, so please keep that in mind (although Lara IS pregnant and DOES love chocolate!! :o) All kidding aside, Phil did pass some significant swallowing tests just yesterday (which is a huge victory after suffering a stroke), so he no longer has any dietary restrictions...this is great news! Whether you're just visiting or you've made a meal or come to play music, please just come prepared to go with the flow. Every day is a little hard to predict.

Finally, I have written my own observations on the best way to communicate with Phil post-stroke, and I have also attached some more formal guidelines for communicating with someone suffering from aphasia (this is the name for Phil's speech difficulty). Please read through these before making contact and also note that phone conversations are much more difficult for Phil than face-to-face interactions.

Lisa's thoughts on seeing Phil for the first time and talking with him:

--This is an emotional experience for both of you and whatever comes up will probably be reciprocal and break any tension. Phil LOOKS perfectly healthy and normal, so do not be afraid.
--Keep your sentences/ideas concise and clear (not always easy) and be sure to ask questions to engage him in the conversation.
--Try hard not to speak noticeably louder or slower; he understands what you are saying. He just might not be able to answer you right away or at all.
--If Phil is struggling with a word that you think you recognize, help him by giving him the first syllable of the word to see if he can locate it (for example, if you think he's trying to say "anarchist", say "an, an, anar" to see if he can get it.
--To follow up on that example, definitely do NOT lose your sense of humor. Phil has certainly not lost his!
--Appreciate that Phil is sitting next to you breathing, walking, playing music, eating, holding your hand, whatever. This is a miracle and we are all lucky to have him in our lives."
by Lisa King (Lara's sister)

Formal tips about communicating with someone who has aphasia: Talking With Individuals With Aphasia: Maximizing Communication Effectiveness
I. Create an Atmosphere Conductive to Successful Communication
  • Treat the aphasic person as an adult.
  • Create an atmosphere in which the individual is encouraged to make decisions, offer comments, and communicate thoughts and desires.
  • Remember that successful communication is the goal, regardless of the modality or quality of the response.
  • Ignore the grammatical errors and poor articulation if you understand the message.
  • Do not turn "conversation" into "therapy" by correcting or requesting repetition unnecessarily.
  • Really listen, give undivided attention.
  • Keep distractions and background noise to a minimum.
  • Try to keep the communication situation relaxed, thus facilitating reactive utterances.
  • Seek and appreciate humor to lighten the communication interaction. 

II. Maximize the Aphasic Patient's Ability to Understand
  • Look at the person when you speak.
  • Speak slowly and clearly, but speak with natural intonation and loudness. Make the most of facial expression and tone of voice, without overdoing it.
  • Supplement your speech with natural gestures and pointing.
  • Have paper and pencil available. Write down key words from your message, or even sketch a picture, if it will help to get your point across.
  • Repeat and rephrase as needed.
  • Take your time.
  • Confirm that you are being understood. Ask simple questions to make sure. Determine if yes/no responses are reliable, then structure your questions accordingly.
  • Keep your messages focused, i.e., one message at a time. Simplify long, complex directions. Break into steps, if possible.
  • In a group, one speaker should talk at a time, and switch speakers slowly.
  • Change topics slowly, and with warning.
  • Ask for guidance or feedback from the aphasic individual. What helps the most? Does it help if I write some words?
III. Understanding Speakers with Aphasia
  • Be an attentive, active listener.
  • Be patient, and allow the individual to complete his or her own statements.
  • Do not routinely anticipate and fill in the end of statements. However, such assistance is appreciated in some instances. Be sensitive to the abilities and desires of the person. Find out if they want your help, or would rather have more time to finish the statements themselves.
  • Focus on what the patient is able to communicate, regardless of the modality (spoken, gesture, written, facial expression, vocal intonation, body language).
  • Confirm your understanding by a natural response or a restatement (or expansion) of their utterance. Try to do this in a natural conversation style.
  • When you don't understand, encourage the use of gesture, pantomime, writing, and drawing. Always have a pencil and paper available.
  • Give the aphasic individual enough time to respond. Before you speak again, watch closely for cues that the individual may be thinking or preparing a response.
  • Observe and discern the communication strengths and liabilities of the talker. Rely on the strengths, and try not to let the liabilities get in the way. 
If the individual produces few words, but they tend to be meaningful, then mentally fill in the "little words" to get the big picture.
  • If the individual is talkative, but lacking in meaning, listen and watch for the bits of information that emerge from the words, facial expression, and gesture. Ignore the nonwords.
  • Ignore the content of preservations (repetitive utterances) because they are likely to have little meaning. But attend to the way in which they are spoken, because that may convey meaning (e.g., agreement, disagreement). 

  • Again, be patient and enjoy the exchange. Focus on what you so understand, rather than the communication failures.


5 comments:

  1. Cannot WAIT to have you back in the same realm. It is our great fortune to have you both back on the east coast. Soooo much love and care. Holding you in our hearts and minds forever and ever. <3 mel

    SAFE TRAVELS! WELCOME HOME! xoxo

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  2. Welcome Home! Welcome to your Home! Welcome to your community! Soo happy to know that you are just around the corner.

    Cozy in and enjoy the rain drops.

    All love,
    Jamie

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  3. Hello Lara and Phil,

    I just heard about the sad news about Phil earlier this evening from our neighbor Marli, and I have been praying for the two of you and your baby since hearing the news. I really hope that Phil is able to recover quickly to as normal a state as possible, and I will continue to pray for all of you. I am leaving very early tomorrow morning for Panama, otherwise I would stop by with some flowers and some food, but I will be back in a couple of weeks and I will check in when I get back. I was in Bodh Gaya, India several weeks ago, and I heard the Dalai Lama give some public teachings while I was there. One of the things that he mentioned, which I would like to pass on to you, Lara, is that scientific studies have shown that the connection between the mother and the unborn child is so strong that when the mother experiences difficult emotions, that the child feels actual physical pain. So, I am sure that this is an incredibly difficult time for you, Lara, but I would encourage you to do everything you can to keep your thoughts in a positive state of mind, filled with hope and faith that Phil will recover quickly, and as free as possible of worry or nervousness about anything, because the baby inside you is so connected to your emotions and may be somewhat confused about what is going on right now. I hope this is all right to share this thought with you, and I am sure that you are already doing everything you can to stay in a positive state of mind, but I just thought that perhaps if you are thinking of the state of mind of your child as well, that may help keep your own mind on a positive track. I will keep checking this site, and I will check in with you when I get back to Portland.

    Best wishes,

    Ben Pollard

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  4. Welcome Home!! So glad to hear that you are safe and sound. With Big Love, Deborah

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  5. Hi- welcome back to the (rather wet and soggy) east coast!
    i'll have a look at yr calendar and such, see when i can come up- i'll bring a violin when i come, in case phil is wishin to play with folks, too. much love!
    katt

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