Hi. It's been a while since my last post. I've been busy getting back to work full time and less has been happening regarding new appointments, diagnosis updates or treatments. Recently though, I've addressed one of my symptoms in...
Hi. It’s been a while since my last post. I’ve been busy getting back to work full time and less has been happening regarding new appointments, diagnosis updates or treatments. Recently though, I’ve addressed one of my symptoms in a more head-on way and wanted to write about it in case anyone out there identifies and finds that this course of action could help them.
Since my brain haemorrhage, I’ve noticed a marked difference in my ability to get the right words out. It isn’t all the time – some days my brain just works, other days it doesn’t. And on days where it doesn’t, it can be both worrying and exhausting to get through the day: my brain pedaling at a-million-miles-an-hour to try to source those words it can’t find.
Since my job is highly dependent on my ability to communicate succinctly and effectively, I decided that enough was enough and I needed to do something about this. I called my neuro-oncology nurse to ask for her advice.
A whistle-stop background in brain tumour related communication difficulties
Firstly, it’s important to know that damage to different areas of the brain can cause different types of difficulties. Problems may arise with attention, memory, emotion, problem solving, visual perception – to name just a few things. Language and communication is just one area which can be affected by a brain tumour or its treatment, BUT, it’s an area where multiple areas of the brain are intrinsic to formation and understanding. For example:
In most (not all) people, the right hand side of the brain controls ability to pick up on social communication, for example understanding jokes or nonverbal queues. In most people, the left hand side of the brain is responsible for verbal and logical functions including language (listening, reading, speaking, and writing), thought and memory involving words. The temporal lobe is involved in language comprehension and selective attention of auditory input. Wernicke’s area is important for language development. Broca’s area is related to the production of speech.There are lots of good articles/sites out there explaining the areas of the brain (see https://braintumourwarrior.wordpress.com/2016/03/02/science-rules/ for an example I found previously).
There are also lots of different types of communication difficulty; including,
aphasia (issues with production and comprehension of speech) global aphasia (severe, meaning the person can only produce/understand a few words) fluent aphasia/Wernike’s aphasia (ability to grasp the meaning of spoken words and sentences is impaired, while the ease of producing connected speech is not very affected.) dysarthia (difficulty articulating speech, for example slow or slurred speech) apraxia (difficulty connecting planned speech from the brain to the mouth)Communication difficulties can happen to the most high-functioning linguists – and at all levels, are worrying and frustrating to deal with. When Helen Harris wrote about her experiences with aphasia for The Guardian, she noted,
“It is common for people with aphasia to feel depressed, isolated and anxious. For several months, I didn’t want to see anyone but my family and my closest, oldest friends. I felt humiliated by my speech, and how I felt it had changed my character. I was conscious that having a chat with me must have sometimes been painful for others, too. Sometimes, I got bored with waiting for me to get to the point.”
However – as Helen also notes – it’s important to remember that communication difficulties like aphasia are not a problem with intelligence.
What my neuro-oncology specialist nurse did
When I spoke with my neuro-oncology specialist nurse about the problems I was encountering and worrying about it impacting upon my career, she could not have been more helpful. We discussed together and came up with a course of action:
My nurse referred me to a specialist speech and language therapist, so that I could have the issues I was facing assessed fully. We approached Momentum Skills to facilitate a course at work so that key people close to me could learn more about what I was going through and adjustments we could make to support me.My tips for coping with brain tumour related communication difficulties
From my own experience, here are my top three tips for coping with brain tumour related communication difficulties:
Get assessed: by gaining a better understanding of the issues you’re facing, you’re in a better position to learn the best coping mechanisms to help you. From my own assessment, we were able to establish that what I struggle with is verbal fluency – and were able to try out coping mechanisms including note taking/reading and pre-planning, describing exercises and minimising distractions. I now use all of these in my day-to-day work life. Don’t keep it to yourself: speaking out was a huge weight off my shoulders and I found everyone involved – health professionals, my family and my employer – was supportive, willing to listen and to help. Don’t carry this burden on your own; people around you can only help you if they know about it. Especially if your communication difficulties are mild; those around you might be completely unaware until you tell them. Know what exacerbates your symptoms: for example, stress and fatigue can make communication difficulties so much more pronounced. If you’re in this situation, see if you can take a break, or a short walk before coming back to the task at hand.Lastly, don’t forget:
Communication difficulties are not an intelligence problem.
Coping strategies can help to build your confidence and self-esteem (I know this from my own experience). A Speech and Language Therapist can help to establish the best coping strategies for you.
Reach out to your neuro-oncology nurse for help or, if you don’t have a neuro-oncology team, speak with The Brain Tumour Charity via their information and support line or live webchat help service.
Some useful links:
Information on communication difficulties from The Brain Tumour Charity https://www.thebraintumourcharity.org/understanding-brain-tumours/living-with-a-brain-tumour/side-effects/communication-difficulties/
Helen Harris’ article on her first-hand experiences of aphasia: https://www.theguardian.com/lifeandstyle/2017/jul/03/my-crash-course-in-aphasia-the-debilitating-loss-of-the-ability-to-talk
Momentum’s services to support employers employing a person with acquired brain injury http://momentumskills.org.uk/our-services/employer-services