enableme online chat transcript: Aphasia

Chris Lassig
Thank you everyone for joining us today. We're about to start the chat so have your questions ready!
So that we can follow who's talking to whom, please mention the name of the person you're talking to when replying.
Hi everybody, we're underway and live and as you can see we have Dr Miranda Rose answering questions today. We also have Lisa from StrokeLine here as well.
John
My husband John had a stroke 19 years ago and cannot read write or communicate. At an aphasia group he was the only one in that situation so am wondering are there any techniques out there that could help him?
John
Are there any trials Professor that he could partake in as I see the one here is a stroke under 15 years.
Miranda Rose
Hi John and John’s spouse—Does John use any form of supported communication such as a picture book or computer with images on it to communicate?
John
He did do that at first but to no avail as he even finds it hard to recognise pictures.
Miranda Rose
Hi John—The COMPARE trial is going to adjust its range and consider accepting people up to 20 years after stroke—you can contact them at compareaphasia@latrobe.edu.au 
Miranda Rose
John—it is hard to communicate when we don't understand spoken words, writing or pictures. Does John seems to understand body language and tone of voice? What activities does he enjoy?
John
As his carer I understand his body language and tone of voice to the point if he says no and means yes I understand but of course nobody else does and this can cause a lot of trouble.
StrokeLine
Hi John and Nicole - would John consider a burst of speech therapy?
I'd be more than happy to chat through options in your area.
If you'd like to chat further, please ring 1800 787 653.
Mal
My ability to write, read, comprehend, and listen has very, very low after the stroke. I had a variety of problems for aphasia - numbers, names, words, the alphabet etc. AND all the same problems in Japanese. It is now 2 years and a couple of months since the stroke, and I have made a remarkable improvement without any profession help because I live in Japan. A small group of friends - all English teachers - have helped me with my language skills. Luckily, there are still here and continue to help me. I hope you are able to direct me to the next step of my journey towards recovery or close to what I used to be.
My first question is quite simple but I am sure very difficult to answer: What can I do to boost my memory and vocabulary? And my second question, which is probably related to my first question, is, should I increase the amount of Japanese I use in daily life while decreasing the amount of English since I am much better? Or, will it, in some way, damage, decrease, or disturb my native language, English? I have lived in Japan for 30 years, have a family (language: 30% English/70% Japanese), and house etc.
Miranda Rose
Hi Mal, Very glad to hear that you have experienced a good deal of recovery, and in both of your languages. Sounds like this recovery is the same in both languages—is that correct? I would like to know that before providing you with any recommendations.
Mal
No. My English is very good, but my Japanese is lower.
Mal
This chat is very difficult to me, because it is fast...
Chris Lassig
Mal—Yes it is very fast. We will prepare a transcript for you to read after the chat. In the meantime, please look out for your name being mentioned as Miranda is responding to you.
Miranda Rose
Hi Mal—the scientific evidence about practising one language and its effects on a 2nd language after stroke is limited. In general, as long as your concentration is OK it is more likely that practising in one language will also assist improvement in a second.
People that have enough reading and writing ability to write a message like you have can usually use a range of computer-based or app-style programs to practice and improve their language and communication skills. There is a fabulous online resource called the Aphasia Software Finder that you can search to see what will be suitable for you: www.aphasiasoftwarefinder.org 
Mal
Miranda—It took a long time for English and practice etc. but I am concerned about using so much Japanese. To work, I have to use both.
Miranda Rose
Mal—I can understand your concern but it seems you have no evidence within your own situation that using both languages is preventing you from improving.
Kim Maree
I had my first VBI episode 4 mths ago and have had another 3 since... aphasia has become almost permanent with very few days of near normal... Are there any groups or links I can access as I live remotely?
StrokeLine
Hi Kim,
Yes there are aphasia groups you could link in with. A great way to share your experiences with others in similar situations. Here is a link to aphasia groups: http://aphasia.community/current-groups
For stroke support groups: https://strokefoundation.org.au/About-Stroke/Help-after-stroke/Local-stroke-support-groups-and-choirs 
Kim Maree
Thankyou StrokeLine...I very much appreciate your information.
Dr Pamela Davis
I am a retired speech pathologist and (later) neurophysiologist in research. I have a high level aphasia, agraphia and acalculia. It is very frustrating for me but most people do not notice too much as I can converse in easy conversations. I can mask the agraphia as typing on a keyboard is easy as I can recognise the letters but have difficulty in forming letters by hand as I cannot remember the shape of them.
I am now attending a neurologist in Sydney as the cause of my embolic stroke is still unknown. I now live in a rural area and have not had any therapy. Is the writing I do everyday going to assist in recovery to my level of language pre-stroke (stroke was in June 16). I still have a book to write! So language is important to me.
Dr Pamela Davis
I should say when I had the stroke I was admitted to a rural private hospital as the tertiary hospitals with stroke units had no beds and were a long way away. I "amused" everyone by having my laptop brought in and wrote for much of my 12 hour day in a chair beside my bed and it helped. I had only single syllable words at the beginning but the writing helped a great deal.
Miranda Rose
Hi Pamela—the word practice you did was likely to be a big help in your recovery. Sometimes people need help or adjustments to their computers to handle the language and visual demands after a stroke. Speech Pathologists and Occupational Therapists can usually find ways around these challenges.
Chris Lassig
Hi Pamela, your story is very interesting, and I'm sure your book will be too! How are you finding using the chat today?
Dr Pamela Davis
Thanks Miranda. There was a speech pathologist at the private hospital who administered a high level aphasia assessment on me, she thought I would get referred to a teaching hospital for therapy but I never did.
As I said, I had to write and part of that was the motivation to write my will as the nature of my stroke was of concern and still is. So I wrote for hours every day and emailed everyone I knew. My difficulties now are more in argument on a topic with others and talking in depth on various topics. when the words disappear. How most of the people I talk to now don't mind me saying the word is gone.
Dr Pamela Davis
I should say the laptop I used did not need adjustment but I had to set it up to use and remember all my passwords. Apple help line was fantastic and we managed to finally reset or get me to remember them. The sheer frustration of doing this over two 4 hour periods on the phone was during the week that most of the improvement occurred. I think it was the frustration!
Miranda Rose
Pam—it sounds like your self-motivation and resourcefulness got you through! The high level language issues you refer to are also common. It is great when we find friends and colleagues who understand the communication challenges and just get on with communicating with us rather than concentrating on the difficulties. There are so many ways for us to get our message across, even with language and speech that is not working fully.
Dr Pamela Davis
There is also some high level dyspraxia which was manifest initially with not being able to say multi-syllable words and sounds mish mash—and that still occurs with "sh" and "s" confusion—I would love to see a therapist who could help me recover more towards my pre-existing ability, but it is hard in a rural area.
Philip
Hi everybody i'm fullWilkins
Are use my iPad to read, writing, understanding, practice, etc. software finder is good. Finding the right words is a challenge, but there are some great apps for me.
Miranda Rose
Hi Philip: perhaps you can share the apps you find most helpful with the people chatting here today.
Philip
Hi Miranda—I use a few apps, mostly they are Verbally, WordWeb, Dictation (not as much now as mail has a microphone to text).
Sue Bowden
I am a long term survivor who manages very well to recover sometimes the difficulty in finding the correct word however as I have rediscovered stroke support this year
Whoops I pressed send
Are there any suggestions in how I might improve what I know is a very subtle but something I would like to work on.
Miranda Rose
Hi Sue—glad you have found stroke support. Trouble finding the correct words is the most common problem in aphasia.
One suggestion is to generate a list of words that you really want to be able to say quickly without too much error—perhaps you can ask a friend to help you get the word written if you are having trouble making the list. Then pick your top 10 to 20. Decide that these are your goal for the next few weeks—to concentrate on getting quicker and more accurate in retrieving those words when you need them in everyday life.
You can help your rehearsal by concentrating on the strong associations of the word—for example, if the word is a particular friend's name such as 'Peter’ write the word, then list all the things that you associate with Peter (he might be tall, funny, good at basketball, you might have met him as school etc.). If you have a photo of him you can put that with the written word and look at it while you are rehearsing the name. Maybe you can associate a gesture with his name (like a movement to show he is tall).
Try to do this for your top 10 or 20 words and then find a regular time each day to practice them. There are some computer apps that can also help with word practice like this. The trick is to make the practice relevant to you—what words do you really want to be able to say and to concentrate on a specific group at a time.
Mal
Miranda Rose—I love the idea generating a list of words. I do this with the articles I read and practice with my friends.
Sue Bowden
Thanks Miranda Rose, I could try that, and focus on the language terms used at work as this is what trips me up the most. And looking around me at work it trips a lot of us up, so in thinking of ways I might improve this I need to make sure I am not too hard on myself!!
And speaking of work I need to get back to it. Thanks everyone, a good conversation to be involved in :)
Chris Lassig
Thank you Sue it was great to have you here!
Miranda Rose
Mal—glad you like that idea Mal—see how it goes for you.
Nicole
My dad is John and he had massive stroke 19 years ago and he knows what he wants to say, but can't form the words at all. Any therapy that can help with this, as picture books and words don't work for him as he can't read or recognise them.
Indygo
Hi Nicole, it sounds like your dad may have dyspraxia as well as aphasia. Dyspraxia, in my understanding, means that the link from the brain to the mouth muscles is affected. He may know exactly what he wants to say, but cannot sequence his mouth muscles to move in the right manner to speak the right word/sentence. My long term partner suffers from both as well following a stroke in 2014. His aphasia has improved significantly, but the dyspraxia is persistent and extremely frustrating for him and me
Nicole
The few words he does have like yes and no, he speaks clearly but just can't find the words to say. I think he would be able to pronounce them OK.
Miranda Rose
Nicole: what activities does John enjoy?
Nicole
Lego, watching movies and riding his bike.
Indygo
Nicole, my partner can pretty much perfectly copy, trace and often repeat the word or sentence—with lots of practice—but often not at the time when he wants to say it. For now, we have used prompts. So when someone ask him: “How are you” he can now answer: “Good thank you” and “How are you”. This took a long long time with lots of practice though, but improvement is improvement!
Nicole
Indygo, my dad only has nouns but nothing else, but can say them without having to copy.
Indygo
Nicole, does your dad see a speech pathologist? A good tip for some perhaps is to check out your local university, because ours runs Speech Clinics for their 3rd year and higher years speech pathology students. So they get to interact and assist people with communication issues. My partner has really benefited from these sessions.
Miranda Rose
Nicole: can John draw?
Nicole
Indygo he did for a long time but to no avail.
Miranda: No not really. John's drawing ability is very limited and we would only understand it if he points to something
Rob-Bob
Hi to everyone. I am 3 years post stroke and from the comments above I have noticed the mention of trials for differing conditions. Is there a list of trials that I may see? I'd like to see if my condition matches any trial so that I could possibly follow for results or participate. Thanks in advance. Bob
StrokeLine
Hi Bob, the ANZCTR is an online registry with a list of clinical trials.
Here is the link: http://www.anzctr.org.au/
I suggest using the 'search now' link on the home page, then typing in 'aphasia' which will narrow your search (the list is still quite long though!).
Rob-Bob
Thanks for the link....wow it is long!!! Bob
Indygo
Miranda, I realise this chat is on Aphasia, but could you recommend any specific therapies for dyspraxia? Like I said in my earlier message to Nicole, my partner's aphasia has and is still improving a lot with various different approaches that we practice almost daily (e.g. iPad apps, Melodic Intonation Therapy etc.), but I have had real trouble finding any evidence based therapy to help dyspraxia.
Sue Bowden
Hi Indygo, Dyspraxia I have not heard of that one before in terms of stroke recovery, yes more info would be great!
Miranda Rose
Hi Indygo—there are evidence-based treatments for apraxia of speech after stroke. These require a good knowledge of how speech sounds are produced and combined in the complex actions needed for talking. This kind of treatment is best set up by a Speech Pathologist who can work out exactly what exercises and techniques have the best chance of working for the person's particular abilities and difficulties.
Indygo
Thanks Miranda, yes everything we have done has been in consultation with speech therapists. I have often done my own research before though, which I love doing, and then brought that in to be developed into a suitable plan of action for my partner.
Miranda Rose
Sue: Dyspraxia is a speech problem. In order to produce speech we have to translate the thoughts and language we have in our minds into a series of smoothly coordinated motor programs. When there is a problem making those speech motor programs we have the condition called Dyspraxia of Speech or Apraxia of Speech.
Maybe it is easier to think about seeing someone playing the piano—there is the music on the page that the pianist is trying to play, the muscles of his fingers are strong and ready to work but the brain cannot translate the musical note on the page into a motor program to tell the fingers and hands what movements to make to produce the music.
It is a very frustrating condition because the person can "hear themselves talking in their minds" but not be able to turn those words and sentences into speech. I hope that gives you a bit of insight into Apraxia of Speech.
Indygo: good strategy! The more we can tailor therapy advice to the individual, the better change of it being successful! Always go to therapists ready to discuss your needs and goals.
Indygo
Miranda, thanks heaps that is a great analogy and one I will now definitely use to try to explain it to people, because it is a very difficult to get your head around it—let alone explain to others.
Chris Lassig
Repeating the links given earlier, you can find aphasia groups at:
http://aphasia.community/current-groups
Stroke support groups and aphasia choirs at:
https://strokefoundation.org.au/About-Stroke/Help-after-stroke/Local-stroke-support-groups-and-choirs 
Sue
Hi everyone, I had my brain stem stroke 4 yrs ago. I have recovered very well. I have anxiety & suffered depressed. With the anxiety & tiredness my speech becomes slurry, especially on the phone when I say my name. It’s been suggested I have speech therapy.
StrokeLine
Hi Sue, I'm glad to hear you've recovered well. Unfortunately anxiety and depression are common following stroke.
Both fatigue and anxiety can worsen speech clarity. Have you found any strategies that help with the tiredness? You may find our podcast on fatigue helpful.
And yes, I agree, speech therapy would be a good idea. If you haven’t already, speaking to a psychologist about the changes in mood would also be worthwhile as well.
You can access subsidised psychology sessions with a Chronic Disease Management (CDM) Plan—your GP can write this up for you.
Here is a link to the fatigue podcast: https://enableme.org.au/en/Community/Podcasts/Fatigue 
Please feel free to give us a ring on 1800 787 653 if you'd like more info.
Mal
I had a seizure two weeks ago, and I took me time to get back previous level. Are these seizures common with aphasia in short time?
Miranda Rose
Mal: yes, seizures are common after stroke, and many people find that their function is worse for a while after the seizure. It is important to get advice from your General Practitioner or Neurologist about managing any seizure activity.
Mal
Miranda: Yes, I have done that. Bummer. I don't want to do back...
Chris Lassig
We have 10 minutes remaining in the chat. Please ask any last questions before we finish!
Emma
Hi everyone, I am sorry I have logged on late to the group so am trying to catch up. I am working in a rural setting and about to transition from acute to outpatients rehab. A role I have not done for a few years. I am hoping to start an aphasia group when I transition. Does anyone have any good resources or links they can suggest to me?
Miranda Rose
Hi Emma, one source of resource is our online Aphasia Community. We will soon be uploading a large amount of group resources including group ideas, plans, information, physical resources, etc. You can find it on www.aphasia.community 
Emma
Thanks Miranda! I have just seen the list for other groups around Australia too.
Mal
Thanks for the chat today
Chris Lassig
That's all we have time for today. Thank you all for taking part. There will be a transcript available shortly, with the conversation organised into threads to make it easier to read.
If you have more questions, please call StrokeLine on 1800 787 653.
Once again, some of the useful links we've shared are:
Aphasia community groups:
http://aphasia.community/current-groups
Stroke support groups and aphasia choirs: 
https://strokefoundation.org.au/About-Stroke/Help-after-stroke/Local-stroke-support-groups-and-choirs
Clinical trials:
http://www.anzctr.org.au/
(Search for 'aphasia')
StrokeLine
Thanks everyone
Indygo
Thanks
Philip
Hi all, the last point is it's important to join a group. See you and thankyou.