speech and language Archives - Jumbledbrain https://www.jumbledbrain.com/tag/speech-and-language/ Discover - Empower - Thrive Sun, 04 Jun 2023 16:50:16 +0000 en-GB hourly 1 https://i0.wp.com/www.jumbledbrain.com/wp-content/uploads/2019/03/cropped-tab-logo.png?fit=32%2C32&ssl=1 speech and language Archives - Jumbledbrain https://www.jumbledbrain.com/tag/speech-and-language/ 32 32 115417566 Guest post: Advocating for Your Health Post Brain Injury: A Mini-Guide https://www.jumbledbrain.com/guest-post-advocating-for-your-health-post-brain-injury-a-mini-guide/ https://www.jumbledbrain.com/guest-post-advocating-for-your-health-post-brain-injury-a-mini-guide/#comments Fri, 02 Jun 2023 15:10:30 +0000 https://www.jumbledbrain.com/?p=17153 Guest writer, Julie Morris has kindly compiled 7 of her top tips on how to help you advocate for yourself with your healthcare providers. It can be overwhelming for patients at the best of times, but if like me you struggle with your processing speed and memory these crucial appointments can be even more challenging. […]

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Guest writer, Julie Morris has kindly compiled 7 of her top tips on how to help you advocate for yourself with your healthcare providers. It can be overwhelming for patients at the best of times, but if like me you struggle with your processing speed and memory these crucial appointments can be even more challenging. But Julie has some good ways to deal with some of those issues and has included lots of useful links that explain each in detail.

Julie Morris is a life and career coach. She thrives on helping others live their best lives. It’s easy for her to relate to clients who feel run over by life because she’s been there. Today, she is fulfilled by helping busy professionals like her past self get the clarity they need in order to live inspired lives that fill more than just their bank accounts.

To find out more about Julie go check out her website juliemorris.org.

Living with a brain injury can be challenging. Proactively and positively advocating for your own health can help you manage your condition, be healthier, and improve your quality of life. Personal health advocacy, if you’re unaware, is the act of taking responsibility for your own well-being, learning to navigate the healthcare system, and empowering yourself to receive the care you deserve.

Below are some advice and suggestions on how to advocate for your own health post your brain injury, along with useful links to get more details:

Find a solid healthcare professional

Your choice of therapist, doctor, or other healthcare professional matters. Your treatment and recovery will go smoothly if you have someone experienced, knowledgeable, and caring in your corner. You should prioritize experts who specialize in brain injuries. For the best results, shop around, ask friends and family for recommendations, read reviews, check the legitimacy of licenses, and carefully evaluate the care you receive during your initial visit. PyschCentral expands on this further.

Educate yourself on your condition

Knowledge is power. If you know your condition, you know what to expect and the best practices to follow to recover (or improve your quality of life). Furthermore, knowing your condition also helps you receive better quality care from your healthcare providers. For instance, you want to be able to ask your doctor the right questions and better follow along with treatments. NICE offers a brain injury guide that you might find handy.

Organize your medical records

Organizing your medical records offers many benefits.  There may be times that you need to check back on what appointments and specialists you have already seen. To reduce stress and save yourself time, file away all your records and documents. You can quickly find information when you need it, you can share information quickly, and, generally, better understand your condition and health history.

Often different specialists and types of appointments (i.e. online or in person) will use different platforms and devices and often will not be able to accept all document formats. However, the one that is pretty much universal is PDF so converting all your documents to PDF will solve this issue for you. Instead of having multiple files creating clutter, you can use a PDF merging tool to keep all your documents in one file. This will cut the time it would take to find a single document. Once you combine PDF files, you can move the PDF pages to get your records in the right order.

Prepare for your doctor visits

Preparing for your doctor (or therapist) visits beforehand is key to making the most of them. Remember – doctors are often pressed for time and are only human, so they may miss things. You should collect relevant medical records, note symptoms, and prepare a list of questions to ask your doctor before you go. Asking your doctor relevant questions is critical – it’s key to getting the best care from your doctor. TIME offers a list of questions doctors strongly recommend you ask them.

Consider private insurance

For those of you who live in countries which have a state funded healthcare system, such as the NHS which caters for residents of Britain, you’re probably used to relying on them. However, the NHS has many problems currently. Switching to private insurance (and healthcare) may give you access to better healthcare options, with reduced waiting times. Before making the switch, do your research. Understand key insurance terms, compare insurance plans, and check coverage offered. When in doubt, consult with an expert.

Live a more healthy lifestyle

Self health-advocacy is more than seeking better healthcare – it’s also about directly taking charge of your health by living a healthier lifestyle. Get plenty of physical exercise weekly to feel good in your body (it also helps your mind). If you work a lot, you can still get some exercise by taking the stairs instead of the lift and going for a walk during your lunch break. Following a mental health routine is also essential. It can keep negativity at bay and help you bust stress.

Ask for help

Self-advocating for your health doesn’t have to be a solitary journey. You can and should ask for help from the people around you. Your friends and family should be willing to lend you a helping hand when you need it. There are support groups for brain injuries you could join. Last but not least is Jumbledbrain – you can receive coaching from a brain injury survivor with first hand experience and take a 6-week that teaches you how to thrive post-injury.

Conclusion

Self-health advocacy puts you in the driver’s seat of your own recovery and general well-being: You can better navigate the healthcare system, save time and money, and learn how to work together with your doctor to improve the quality of care you receive.

Other articles you may like:

Do you have more tips on how other brain injury survivors can self advocate?

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]]> https://www.jumbledbrain.com/guest-post-advocating-for-your-health-post-brain-injury-a-mini-guide/feed/ 2 17153 Guest Post: Brain injury survivor reveals the secret to public speaking https://www.jumbledbrain.com/guest-post-brain-injury-survivor-reveals-the-secret-to-public-speaking/ https://www.jumbledbrain.com/guest-post-brain-injury-survivor-reveals-the-secret-to-public-speaking/#comments Thu, 23 Jul 2020 20:20:58 +0000 https://www.jumbledbrain.com/?p=9929 Today’s post is by a man who has managed to achieve so much in the face of adversity. He is a successful public speaker and author. Greg little gives us his tips on how to speak to a crowd confidently, even with a speech impediment.  If you want to learn more about his journey, get […]

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Today’s post is by a man who has managed to achieve so much in the face of adversity. He is a successful public speaker and author. Greg little gives us his tips on how to speak to a crowd confidently, even with a speech impediment. 

If you want to learn more about his journey, get his book:

Rise Above: Conquering Adversities, detailing how he survived a traumatic brain injury, overcame the fear of public speaking, and survived the death of a son.
 
At 18 years old I was involved in a motor vehicle accident, which resulted in three skull fractures, a traumatic brain injury, not being found for 6 hours, an 8-day coma, weeks of paralysis and having to relearn to walk and talk, which was compounded with a severe speech impediment I had long before the accident.
 
When discharged from the hospital, my height was 6 Ft and weight 110 lbs. My short-term memory was terrible and still is VERY bad. Coping with stress was/is an enormous task. Poor impulse control, which is caused by damage to the frontal lobe, will often destroy relationships because people can’t see that it’s a physical problem. It made no exception to me.
 
However, I was fortunate. I was able to earn three college degrees, get married and have children. Unfortunately, the marriage only lasted 15 years. I devoted much time to researching TBI. Even though I will always have problems with my short term memory, anxiety, depression and seizures; I have been able to present seminars/workshops on a national level.
 
Support groups helped immensely. Too, researching TBI and how to cope with anxiety/ depression proved beneficial.
 
All of what you read above was coupled with a TREMENDOUS fear of speaking to a group. I grew up with a SEVERE speech impediment. Giving a book report was a traumatic experience!
That all changed years later. Weekly appointments for one year with a very competent speech pathologist changed my world. Too, there are other things I did to overcome: My fear of speaking to a group.

The secret of public speaking relieved.

First, and I learned this from the late Dr. Don Kirkley, who taught public speaking at the Pentagon, the key to effective speaking is….hesitation. Pause. No more than 6 words at a time without a pause. Even less….than six… will work…nicely.
That will give the audience an opportunity to process what you’ve said and will convey confidence. ALL great speakers pause. Regardless if you liked their politics….JFK, Clinton, Obama, Paul Harvey, all great speakers…pause.
Also, it means you are speaking less, which can mean less stress for you. If you use hesitation correctly, your audience will cling to every word.
 
To prevent me from speaking too fast, and sounding nervous, I learned to emphasize the last sound of each word I speak. Was taught to use enough voice. MANY actors, who stutter, use(d) a full voice to overcome their stutter. That includes James Earl Jones, John Wayne and a host of others.
 
I always do something to make my audience laugh at the first of my programs, it takes away some of my jitters. Making an audience laugh creates a bond. Since I overcame this fear, speaking to a group is a rush. It’s allowed me to conduct seminars/ workshops on a national level. So….pause…last sound….use a full voice.
 
As mentioned earlier, my marriage lasted 15 years. During our fifth year, our second son was born. He was born with no problems. At 3.5 months he was diagnosed with cataracts. On his first birthday, he was diagnosed with an enlarged heart and enlarged liver. He lived six more months and died in my wife’s arms. The death of a child can play havoc on a marriage. I joined a support group, The Compassionate Friends (TCF), which I continue to attend. Hearing from others, who have walked my path, helped more than words can express.
I was able to publish a book, Rise Above: Conquering Adversities, detailing how I survived a traumatic brain injury, overcame the fear of public speaking, and survived the death of a son.
 

Other articles you may like:

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]]> https://www.jumbledbrain.com/guest-post-brain-injury-survivor-reveals-the-secret-to-public-speaking/feed/ 4 9929 Online support for brain injury survivors and caregivers https://www.jumbledbrain.com/online-support-for-brain-injury-survivors-and-caregivers/ https://www.jumbledbrain.com/online-support-for-brain-injury-survivors-and-caregivers/#comments Mon, 19 Nov 2018 10:49:28 +0000 https://www.jumbledbrain.com/?p=6287 Hospitals do a great job at saving lives, and they are under constant pressure to support the public with a variety of health issues. When a patient gets rushed in with a brain injury, they launch into action, working tirelessly to stabilise them. Sometimes this takes hours, sometimes it takes months, but I think it’s […]

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Hospitals do a great job at saving lives, and they are under constant pressure to support the public with a variety of health issues. When a patient gets rushed in with a brain injury, they launch into action, working tirelessly to stabilise them. Sometimes this takes hours, sometimes it takes months, but I think it’s fair to say we are all thankful for the work they do.

But what many brain injury survivors, such as myself, too often find is that once they are sent home it’s difficult to get the right support. My partner James had to fight for someone to visit me at home to help me build up enough strength to have some independence. (Whilst I wasn’t shy about him having to help me shower, it wasn’t how I wanted to be left in my early 30’s.) And after talking to my GP I managed to be referred to a speech therapist . Bear in mind that at this stage my GP had no idea what had happened to me. Yes the hospital in London had updated my notes, but GP’s don’t review them unless you are sat in front of them. So why the hospital hadn’t made the effort to make this referral as they kicked me out, I don’t know.

But even after I had accessed this help (and believe me the speech therapist was AMAZING) there was still a disconnect. My world had been turned upside down and I somehow needed to process that. The trouble was, at that stage I didn’t have the insight to be able to work that out for myself.It took months to get support with my failing mental health, and there were times that I wasn’t sure I’d make it.

But thank goodness I did! And now I want to help plug that Grand Cannon sized gap. I’m not a therapist, so if you are being swallowed up by serious depression, bipolar or any other painful mental health disorder there are others out there, such as Betterhelp who can help you. But what I can offer you is the insight that all too often brain injury survivors don’t have.

I’ve been there, walked that terrible confusing road, and found the hidden path home. So now I coach others on how to navigate that journey too. There’s a lot of potholes you have to side step, and hanging branches that you have to duck, so guidance can make all the difference. And I do this online, so we don’t even need to live near each other. I have an incredible Facebook group full with people who are keen to share ideas. But also I use the internet to speak to people via Messenger or Skype, to talk to them privately about what is going on for them and develop a plan to help get them to a more comfortable position.

So my message is this: even if you live in an area where there aren’t many services, you don’t have to fight this on your own. You do have options! For more ideas on online communities I’ve created that you might want to become a part of, visit Brain injury community.

Does online support work?

Here in the UK we have access to health services available via the NHS, which we pay for via our taxes. But it is under continuing pressure to deliver more with less funding. In the UK, mental health conditions make up around 28 per cent of the total burden of disease, but they receive just 13 per cent of the total NHS budget. Meanwhile, the budget for adult social care, which provides ongoing mental health support, has been cut in real terms by 13.5 per cent in England over the last eight years. This makes it even harder to get on the waiting list for talking therapies, and when you do you could be on there for an extraordinarily long time before you see anyone. And for those countries that usually pay via medical insurance, you often are given limited choices about who you can work with. So what if the person you need to open up to, trust and connect with just doesn’t make you comfortable enough to do that?

With online support you can be in your comfortable space at home where you feel safe. There’s no issues with having to work out how you are going to get to your appointment; organising transport, negotiating traffic and the panic of worry that you might be late and then you’ve gone through all that stress for nothing.

I went to a life coach who lives in Canada. I can’t remember how I found her, and she was specialising in helping people run an online business. But I connected with her and felt like she really GOT ME. So even though the time difference meant we both had to do some jiggery pokery with our schedules in order to be able to chat because of the time difference, believe me, it’s worth it! The amount of times I would find myself crying because she had hit the nail on the head about something that I didn’t even know was a problem because I’d buried it so deep. That would lead to me being able to address things that I might not have even know were relevant to why I was holding myself back from achieving my goals. Honestly it’s such a journey of discovery when you connect with the right person. Yes online support does work because it enables you to have so many more options about finding the right person to help you develop yourself. It opens up a whole new world to you.

This post is sponsored by Betterhelp. More online therapists can be found here. All reviews and opinions expressed in this post are based on my personal view.

Other articles you may like:

Have you tried online support for your experience of brain injury? Did it work for you?

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]]> https://www.jumbledbrain.com/online-support-for-brain-injury-survivors-and-caregivers/feed/ 5 6287 Guest post: Mark Whelan on starting again after a brain injury https://www.jumbledbrain.com/guest-post-mark-whelan-on-starting-again-after-a-brain-injury/ https://www.jumbledbrain.com/guest-post-mark-whelan-on-starting-again-after-a-brain-injury/#comments Wed, 12 Sep 2018 12:33:48 +0000 https://www.jumbledbrain.com/?p=6012 I do like to feature the stories of others as it gives more perspective than just my own. As we all have very different journeys, by covering more stories I hope that more people can relate to the issues raised. Today I would like to introduce you to Mark Whelan who is one of the […]

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I do like to feature the stories of others as it gives more perspective than just my own. As we all have very different journeys, by covering more stories I hope that more people can relate to the issues raised. Today I would like to introduce you to Mark Whelan who is one of the most active and supportive members in my Facebook group, Brain Injury & Mental Health Support. He is often trying to help others who are trying to work out how to go about starting again after a brain injury.

My name is Mark Whelan. I was born in New Haven, Connecticut and grew up in Branford, Connecticut. (An interesting fact about Branford is that in 1974 Connecticut Hospice opened there, which was the very first Hospice ever in America!)  Currently I live in Old Lyme Ct, which is best known for its community of American Impressionist painters.

I was a very successful Accountant before my TBI, and I’m very happily married to my beautiful wife of 33 years, Monica. We have 2 adult children that are very successful and we are so proud of. Life was good and I now realise that I took a lot for granted.

On Halloween of 2016 everything changed. In the middle of the night I fell down the stairs and suffered a traumatic brain injury and a subarachnoid haemorrhage. My wife didn’t hear  me fall, but she heard me moaning though. I had made a huge hole in the staircase wall showing the impact! My wife called an ambulance and I spent 6 weeks in the ICU at Yale New Haven Hospital in and out of a coma. I then was transferred to Gaylord Rehabilitation in Wallingford and spent another 6 weeks there. I can’t remember hardly anything from my time at Gaylord, except many hallucinations and nightmares. Next I was transferred to Bridebrook Rehabilitation in Niantic, Connecticut. From Bridebrook I only remember clearly the physical and speech therapy. Also, they made recommendations for my return home. I was still using a walker and a gait belt.

In the beginning of March of 2017, I returned home. First I was in a wheelchair, then a walker and finally a cane. My brother in law installed a hand rail for 3 steps we have from the dining room to the living room. Also, my wife prepared me a nice bedroom DOWN STAIRS! I also had in-house physical, occupational and speech therapy. Fortunately I had a outstanding home health aide for about a year from Companions and Homemakers.

As of father’s day June 17th of this year, I ditched the cane! I’ve had several vision, physical and occupational therapy. Currently I just have physical therapy twice a week. Like I said,  I took a lot for granted. Mostly my freedom to be able to walk, talk, etc. without giving it a second thought. I have been blessed with a loving family, lots of friends and I’ve had wonderful Doctors and caregivers.  My relationship with my wife has been tested but we just celebrated our 33rd Wedding anniversary so I think we’re going to do fine. Currently, I do not drive but have many friends, mostly from my church who have helped me out tremendously.

The Brain Injury Alliance of Connecticut gave me a useful document at my first support group meeting for me to carry with me at all times. Basically it summarises what I would like the public to know about brain injury survivors. It read:

The purpose of this card is to educate you on some of the symptoms of brain injury so that you will understand, if necessary I am not being intentionally difficult or hard to get along with. I am not mentally-ill, I am a brain injury survivor.

Because my speech, vision, hearing and/or sense of understanding is impaired, I may be unable to hear or respond to your questions clearly. My coordination and ability to control my muscles might be impaired so might not be able to perform or complete physical tests occasionally requested by law enforcement agencies.

My injury may also cause me to laugh or cry excessively. I may be restless and exhibit signs of agitation and anxiety. My responses might be very slow and deliberate. If I’m having difficulty with short or long term memory, I may be confused, disorientated or easily angered. I may also have excessive reactions to confrontation.

I will work with you to the extent I am able to and ask that you contact the persons listed on the back of this card as quickly as possible.

Copyright TPN, Inc.

I would not change a thing of what I’ve been through! Today, I choose to view my brain injury as a blessing. It’s like starting over again!

Other articles you may like:

How difficult have you found it to be starting again with a brain injury? What advice would be have for others who are trying to find their way following a brain injury?

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]]> https://www.jumbledbrain.com/guest-post-mark-whelan-on-starting-again-after-a-brain-injury/feed/ 3 6012 Guest post: Mark Koning on brain injury, the long road. https://www.jumbledbrain.com/guest-post-mark-koning-brain-injury-the-long-road/ https://www.jumbledbrain.com/guest-post-mark-koning-brain-injury-the-long-road/#comments Wed, 21 Mar 2018 19:40:51 +0000 https://www.jumbledbrain.com/?p=3716 Today’s post is by a man who, like myself, as been on both sides of the brain injury coin. He was a young boy when he contracted a brain injury which undoubtedly changed the course of his life. And later he witnessed his mother go through the pain of a traumatic brain injury and began […]

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Today’s post is by a man who, like myself, as been on both sides of the brain injury coin. He was a young boy when he contracted a brain injury which undoubtedly changed the course of his life. And later he witnessed his mother go through the pain of a traumatic brain injury and began caring for her.

MARK’S PASSION TO LEND A HELPING HAND, OFFER ADVICE AND GIVE BACK, HAS DEVELOPED INTO A MORAL AND SOCIAL RESPONSIBILITY WITH THE GOAL OF SHARING, INSPIRING AND GROWING, FOR OTHERS AS WELL AS HIMSELF. HIS EXPERIENCE AS A SURVIVOR, CAREGIVER, MENTOR AND WRITER, HAS LED TO HIS CREDIBILITY AS AN ABI ADVOCATE AND AUTHOR OF HIS LIFE’S STORY, CHALLENGING BARRIERS & WALKING THE PATH. FOLLOW HIM ON TWITTER @MARK_KONING OR GO TO WWW.MARKKONING.COM

The Long Road.

It has been quite a journey for me over the course of my life, from memories of my folks taking me and my sister to Marine Land, African Lion Safari, trips to Florida, all of those school years, right up to where I am now. Quite a few of those memories from my younger years come from stories shared, photographs and a few home made movies. A lot of my earliest moments are stored, within something tangible, not exactly within my mind.

At the age of six a viral infection erased everything previous and left me in a two week coma with my parents clutching at their child’s hand. When I awoke I had to rebuild my speech, my understanding, my physical strength. Because of my young age I think my recovery sped along. I was home within months but remained sheltered from returning to school and much of the outside world.

Mark Koning:

Growing up with a brain injury.

Like with having to fight for an understanding with the doctors to admit me to the hospital (they saw no problems until seizures returned), my mom had to fight for me to return to school. I had missed an entire year because of this illness, the teachers could not understand, they questioned if I was ready.

Throughout my public and high school years, and even in college, I faced many challenges. I failed, I was made to repeat, I was occasionally ridiculed by others for not being able to keep up. “Stupid” was a word I was labelled with, “What’s wrong with you?” was a question I often faced.

It was a question I often asked myself.

I may have lowered my head, but always, even if pushing against an unseen abyss, I moved forward.

My long road, my journey, was missing something. Well, to be honest, a few things. But the one missing thing I refer to, is a diagnosis. I never heard anyone refer to me as a kid with a disability, let alone a brain injury.

It was my passion for writing that led me to self-discovery. Wanting to create a story based on my illness, a small part of one of my Creative Writing courses. I began with questions for my mom (my dad had passed away when I was thirteen) and other family members. Symptoms were what I used to look online and, together with my feelings, find a conclusion.

Mark was only a young boy when a virus caused a brain injury, making life challenging, school life exceptionally so. On this long road to recovery, he now volunteers to give back to the services who have supported him through his incredible journey.

Events that shaped a career path.

But it was my mom’s fall and her own acquired brain injury in 2001 that brought about my search for an official diagnosis. A strange deja-vu overcame me when I paced the hospital floors. I concluded right then that my own thoughts were not enough. So tests given by a Psychometrist and a consultation with a Neuropsychologist concurred with what I had earlier discovered about myself. And even though it was kind of expected, it was still shattering news. Part of it was having a brain injury. Part of it was that I had struggled for so many years unknowing.

Currently I work full time in a non-profit organization where I feel like I am giving back a little with the services that it offers. While I find the work good and satisfying, I struggle with fatigue. I require the accommodation of working at my own pace, being able to take breaks and step away when my concentration level blurs. The most frustrating of it all, in both work as well as most other things in life, is that this disability, this brain injury, is invisible to the naked eye. It is even episodic in the fact that some days or moments are better than others.

But I’ve come to a place where I am comfortable with who I am. If others don’t understand my energy level and pace, the occasional frustration, the on-off again word finding difficulty… well, that’s too bad for them because I have a lot to offer.

Over twenty-five years between injury and diagnosis. Misunderstanding from family and friends. Explaining my injury (now that I understand myself) only to have people forget, roll their eyes or conclude what I really meant instead of what I actually said. There are times I get pissed off with these things. But I’ve realized, and try to remind myself, none of this is my fault or my downfall.

I am Mark, not the brain injury. But I do live with it, and I have accepted living with it. The survival, ups, downs, accomplishments and needs for improvement. They are all me. And even if sometimes still pushing against an unseen abyss, I move forward.

Other articles you may like:

How far down the long road of brain injury did you have to go before you started to accept your new life? Do you have any advice for others?

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]]> https://www.jumbledbrain.com/guest-post-mark-koning-brain-injury-the-long-road/feed/ 2 3716 Guest post: Jo Wood, “Brain injury. This is me, no apology.“ https://www.jumbledbrain.com/guest-post-jo-wood-brain-injury-this-is-me-no-apology/ https://www.jumbledbrain.com/guest-post-jo-wood-brain-injury-this-is-me-no-apology/#respond Thu, 22 Feb 2018 09:57:58 +0000 https://www.jumbledbrain.com/?p=3502 Yes the title image is a brain scan of this week’s guest writer, Jo Wood. It’s terrifying, and Jo wasn’t sure if it was appropriate to show it. But for us it’s just an image to demonstrate the severity of her brain tumour. For her, it’s reality so she’s the one who is having to […]

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Yes the title image is a brain scan of this week’s guest writer, Jo Wood. It’s terrifying, and Jo wasn’t sure if it was appropriate to show it. But for us it’s just an image to demonstrate the severity of her brain tumour. For her, it’s reality so she’s the one who is having to be brave enough to share it with us. So whilst it’s shocking it depicts her message perfectly; “Brain injury. This is me, no apology.”

Guest writer Jo Wood talks about how she has been affected by her brain injury, and how she won't offer an apology for it anymore.

June 2016 my life changed, with the words “you’ve had a seizure, that’s why you can’t speak, we have found a large mass on your brain. You need emergency surgery.”

Wow, I was 45 and loved my job as a communicator for the deaf. I lived fast, enjoyed life, finally I felt confident in myself, this was me. Brain injury changes everything. I am different, bruised, scared, I look different, speak differently, socialise differently in fact everything is paced, managed and calculated so I can cope with this bruised and injured brain.

2 years on, surely is long enough, to be back to the old Joanne? No, I am told that can be early in recovery for some. Yes, I’ve made progress from the girl who woke from surgery with 40 stitches in her head, struggling to speak, frightened, racing thoughts, ruled by panic attacks and anxiety. Well let’s face it, how can you ever return to the old you? Just the experience of a brain injury, the vulnerability it brings makes you look at life differently. So now this is me? In some ways I hope not, I want more, I still hope I continue to recover and evolve, we do still have a place and a purpose in this world, right?

I recently saw the film The Greatest Showman, there’s a bearded lady in it that sings a song ‘This is me’. The film is a great if you like musicals and your brain can cope with it, the story is about people who have been discarded, made to feel that they don’t have a place in this world, as they are different, they don’t fit in. I have felt like this since my brain injury, I am dissatisfied with me, I think that I no longer fit in, there’s no place for me. Do you ever feel like this?

IT’S A LIE! You may be bruised, scared, different, this is you, who you are meant to be for this time. Maybe you will still continue to recover and evolve and even if you don’t, well ‘This is Me’ ‘No Apology ‘.

You do have a place in this world, you do fit, you count. It’s not easy this self acceptance, I have a brain injury, this is me. I will no longer apologise for being me. I need to put my energy into making the most of what I am now, I do belong, like you, wherever you are on this brain injury journey. At the beginning or as far as you can go, don’t apologise, be proud of how far you’ve come.

Brain Injury, This is me, no apology.

Jo Wood

Other articles you might like:

Do you feel like you have to always explain your brain injury to feel accepted? Or have you too realised that no apology is necessary?

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]]> https://www.jumbledbrain.com/guest-post-jo-wood-brain-injury-this-is-me-no-apology/feed/ 0 3502 Is my brain injury making me a bad friend? https://www.jumbledbrain.com/brain-injury-making-bad-friend/ https://www.jumbledbrain.com/brain-injury-making-bad-friend/#comments Tue, 13 Feb 2018 15:18:13 +0000 https://www.jumbledbrain.com/?p=3456 Most people need descent sleep to be able to function well in their day to day lives. But for brain injury survivors it’s their life line. Sleep allows the brain time to recover from the day, and when you have a brain injury your poor little noggin runs close to melt down a lot. I […]

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Most people need descent sleep to be able to function well in their day to day lives. But for brain injury survivors it’s their life line. Sleep allows the brain time to recover from the day, and when you have a brain injury your poor little noggin runs close to melt down a lot. I have tried to explain this to friends and family, but I’m not sure everyone quite understands. It could be that because I don’t work they think I can just catch up on sleep some other time. And this is true, but that doesn’t mean it fits in with my schedule. So does it make me a bad friend for not wanting to take their calls when I’m trying to sleep?

How much is too much?

I have always tried to be the friend I wish I had, so if someone has an emergency I will try to help. That has included times when people have had a night on the town, and suddenly realised they haven’t got any money for a taxi home. So I have dragged myself out of bed to go rescue them. It’s the right thing to do, and I wouldn’t want anything bad to happen to them just because I was too lazy to help them in their hour of need.

There have been times that people just need a chat because they are feeling really low. Again, I understand the need to feel there is someone out there who will listen when you are facing hard times. So I have taken many of these calls in the middle of the night and tried to be helpful. But when this starts to become a pattern I feel like I don’t want to keep doing it. My partner James tells me to ignore it as I can’t physically continue, but that makes me a bad friend. It’s  not that I don’t care, I do empathise with them. I would happily take their call during the day, or evening, because that’s better for my schedule. They would get more from me then as my brain would be in a better condition to respond.

I’m not using my brain injury as an excuse.

They say you can count your real friends on the fingers of one hand. (I’m not sure if that means you can include your thumb or not.) But thinking like that can make you more sceptical about people and give up on them too early if all the fingers on that hand have already been booked. But I do find it difficult to reconcile how when someone knows about my brain injury, why they would continue to push my boundaries. Perhaps they think I use it as an excuse seeing as I have recovered a lot (but will never fully.) I’m not saying they are being a bad friend when this happens, but I do need a little more understanding from them.

If you find the brain injury survivor in your life doesn’t always respond how you need them to, maybe a change in your approach might help.

  • Consider time – are they going to be well enough or will they be battling with brain fog?

  • Think about location – try to minimise distractions. You might think it’s great to meet for coffee, but the ambient noise might be overwhelming for them.
  • Are they better face to face or on the phone? – when you can’t see a persons face to get the social cues from their expressions, it can put extra pressure on word finding and understanding. This can be even more draining.
  • Judging when they are flagging – it’s nothing personal when we run out of energy. An intense conversation sucks our reserves like how the battery on your phone depletes when you use it non stop. Please remember to consider how they are coping even when your crisis hasn’t found a resolution or closure.

A brain injury doesn’t turn you into a bad friend, I just like to think of myself as a “very limited edition.” (Pun intended.) I can’t solve everything, or get involved as much. You can still get great things from me, but they are precious so it’s only while stocks last.

If I don't take a friends call in the middle of the night because I need to recharge my brain, does that make my a bad friend? I want to help, but my brain injury imposes it's own limitations on what I have to offer.

Other articles you may like:

Do you question if your brain injury has made you a bad friend? Is it reasonable to put a limit on what friendship means? 

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]]> https://www.jumbledbrain.com/brain-injury-making-bad-friend/feed/ 8 3456 Understanding how to communicate with brain injury survivors https://www.jumbledbrain.com/communicate/ https://www.jumbledbrain.com/communicate/#comments Wed, 14 Dec 2016 19:32:20 +0000 https://www.jumbledbrain.com/?p=802 It’s terrifying for friends and family when they realise that their loved one has a brain injury. Initially their behaviour and comprehension can be all over the place, so it’s difficult to understand what is happening. But with time, patience and the right therapy, the effects can improve. For some there will be massive improvements, and […]

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It’s terrifying for friends and family when they realise that their loved one has a brain injury. Initially their behaviour and comprehension can be all over the place, so it’s difficult to understand what is happening. But with time, patience and the right therapy, the effects can improve. For some there will be massive improvements, and unfortunately not so much for others. I am one who has improved so much that strangers find it hard to fathom what I’ve been through. But that has it’s own challenges, as it depends on how people communicate as to how well I will respond. For many who are living with an invisible disability this is a common issue. So I thought it would be useful to explain why some things are challenging, and ways others can communicate better with survivors.

How to communicate with someone with memory issues.

One of the most common symptoms of brain injury is a poor short term and working memory. So many survivors, like myself use reminders such as their phones or diaries to try to combat this. But what is more difficult is the details. There might not be an appointment that needs to be booked, but there can be lots of other details which someone is imparting to the survivor. The individual may understand at the time, but key details could fade afterwards. The best way to tackle this is to make sure they have something to refer back to. So I would urge people to also communicate in writing, to help jog their memory. A text, email or post it note can all help ensure the key message is cemented.

Consider the language you use.

Slower processing speed, which I am affected by, means I might not always be able to keep up. This is particularly hard if the words you use are complicated, or you use jargon and acronyms I’m not used to. I find this happens a lot in the medical industry, where things with long titles get shortened to initials. But often patients aren’t familiar with these so, those like me can find this goes over their heads.  I’m not one to interrupt, so will wait until the speaker has finished to ask what something meant. But with memory issues I often find that by the time I can ask, I know I needed to ask something but I can’t remember what.

Remember it can be difficult for a brain injury survivor to control emotions, so how your message comes across is more important than ever.

Everyone has at sometime in their lives received a text that made them think the sender was being off with them, but it was just because it came across wrong. Well there is an increased risk of that happening when you communicate with a survivor, particularly in writing. Not that long ago I received an email from a nurse regarding my dad. Whilst I understood what she was saying, and why, the tone came across as attacking to me. She was genuinely sorry that I read it that way and we moved on. But what she didn’t see was how much I cried when I read it. I took it to heart and ended up having a terrible migraine as a result. With just a little more consideration, the stress I endured could have been avoided.

In summary I would ask that people don’t take it for granted that their message has been received and understood. In our modern world we do everything at speed, and that can mean a personalised approach is harder to achieve. But remember every brain injury survivor has been on an incredible journey and deserves that little extra.

A brain injury it doesn't always mean loss of intelligence. But it causes complex issues, so there are do's and don'ts to communicate well with a survivor.

Tips on the best way to communicate with brain injury survivors.

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Have you had issues with how others communicate with you? How do you feel people could do it better?

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]]> https://www.jumbledbrain.com/communicate/feed/ 10 802 Aphasia from brain injury https://www.jumbledbrain.com/aphasia-from-brain-injury/ https://www.jumbledbrain.com/aphasia-from-brain-injury/#comments Mon, 03 Oct 2016 13:15:26 +0000 https://www.jumbledbrain.com/?p=363 I don’t remember much of my time in hospital following my accident that caused my brain injury. But I do remember my mouth and throat were so dry as I was “nil by mouth”, for a while. I kept making lots of complaint like noises, but that wasn’t getting what I wanted so I had […]

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I don’t remember much of my time in hospital following my accident that caused my brain injury. But I do remember my mouth and throat were so dry as I was “nil by mouth”, for a while. I kept making lots of complaint like noises, but that wasn’t getting what I wanted so I had to try to tell them. But I couldn’t think of the words!!! So I tried to make a sound that would better convey what I needed.

“Glug, glug, glug!!!”

My partner James, understood immediately, and he asked a nurse to come round with the soaking sponge they would put on my lips so I could just get enough liquid to answer the dryness.

I hadn’t lost the ability to speak all together but I was struggling to find the words, or when I found one I didn’t know how to put it into a sentence. This was when it became clear I was suffering from Aphasia.

Aphasia comes in different forms depending on the brain injury, some people are not able to speak at all. (When I was shouting the house down at night about whatever nonsense that came into my head, I’m sure some people wished I couldn’t speak.)

Message in – it can make it difficult to understand what is being communicated to you. I still find that I might not be able to follow a conversation properly if I’ve done too much that day, or they speak too quickly. Also reading can be affected which it was for me also, but luckily I’m 90% there now.

Message out – even thinking can be a strain, let alone finding the right word or constructing a sentence. I still struggle to find words, and I get so frustrated because I know it’s in there. But sometimes I confuse the meaning of words and pick the wrong one, but someone has to tell me and then it feels obvious. I suddenly remember they are right and wonder why I made the mistake. It’s similar with spelling. I always used to be the person you would use as your verbal dictionary, but even now post brain injury, there are times I can’t even think of the letter a word begins with.

Aphasia causes communication and language problems. But the person know's what they want to say, but the process is difficult. Here's how you can help them.

My speech was very slow and at times slurred. This made me even more self-conscious . I’d taken ages to find the word, then it came out like I was in slow motion, and to top if off it was slurred. I felt the need to keep telling people I wasn’t drunk.

As you can tell from the fact that I write a blog, my reading and reading has improved a lot. I can’t tell you how grateful I am for that. My mum taught me to read and write long before I went to school. I barely remember not being able to as a child. But suddenly to be in my early 30’s and barely able to make sense of the written word was terrifying and depressing. I’d always imagined that it must be so hard for those who were never taught properly to read and write. And yes, I can confirm it’s a nightmare!

So if you know someone who has a brain injury, remember to take your time and don’t rush. Try to be more succinct as long rambling stories can be hard to follow. And if they are searching for a word don’t just jump in, as that can be really annoying. By all means ask them to describe it’s meaning. You can try to find it together, but don’t just assume you know without asking. They might agree without realising that your suggestion doesn’t really convey what they were trying to say. You could accidentally change the meaning of their point all together.

Other articles you might like:

If you struggle with Aphasia, what would you like others to do differently to help you?

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]]> https://www.jumbledbrain.com/aphasia-from-brain-injury/feed/ 13 363 Starting my brain injury recovery at home https://www.jumbledbrain.com/starting-recovery/ https://www.jumbledbrain.com/starting-recovery/#comments Wed, 17 Aug 2016 16:49:27 +0000 https://www.jumbledbrain.com/?p=38 I saw a speech and language specialist at my local hospital as I found I was having difficulty swallowing and often would start choking. As well as teaching me some exercises to help the muscles in my throat relax, she recommended I get in contact with the charity Headway. They run local support groups in […]

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I saw a speech and language specialist at my local hospital as I found I was having difficulty swallowing and often would start choking. As well as teaching me some exercises to help the muscles in my throat relax, she recommended I get in contact with the charity Headway. They run local support groups in most areas and she thought it might help me with my recovery.

I wasn’t sure if it would be for me but I was keen to try anything that would help me through this.

I contacted them and an Occupational Therapist called Annette came to see me. She ran a group who long term would like to move back into the work environment and she also explained more about brain injuries in general. She had coping methods. Often this helped identify some of the more common symptoms. The group got to see they weren’t alone in this long road to recovery. They met once every two weeks and all they asked was that we pay £5 to cover the cost of running the group.

The other members were all lovely people, many of whom had had strokes and some had a traumatic brain injury like me. We were all normal people who had suddenly had the pause button pressed on our lives. Annette was very patient. Some would interrupt or shout out because their injury meant they struggled to concentrate or put a filter on their thoughts. But we all got on and I did come away feeling I had learnt something. It helped me feel like I was doing something to take control of my situation.

As with many victims of brain injury, I struggled with depression. One day at the group I broke down uncontrollably. This loud wailing sound came out of me like I have never heard before or since. I remember Annette’s face looked both concerned and terrified at the same time. She took me to one side and we had a chat. Annette told me that they can also offer counselling and she could arrange for a lady called Chris to come see me at home.

 

I think I had hit a new low. Even though I’d always thought I’d be too uncomfortable to take part in talking therapies properly my defences were down.

I had previously been to the doctor who told me to ring the Wellbeing team for cognitive behavioural therapy. But they had taken a month to decide that because I had a brain injury, it wasn’t suitable for my recovery. They made a referral for me to see a Neuropsychologist but there was a long waiting list. So as I needed support despite my reservations this seemed like a good option.

To my surprise I did find myself opening up to Chris. I say surprise just because I had always been reserved and kept things to myself. But she just got me talking, without making me feel like I was being interviewed. She explained there are no right answers and its not like you’re supposed to just have an epiphany. But over time I started to see things in a different light. Things were still traumatic and I had this weight on my shoulders but I started to deal with it better. In time I was booked in with the Neuropsychologist and so my sessions with Chris came to a natural end.

But whilst we both agreed I still had challenges to face, I was now on the right path to recovery, instead of floundering at sea.

I would recommend other brain injury survivors get in contact with Headway.

They also support the carers as its equally distressing for them. My partner James decided not to meet with them as he was so busy at work. Seeing as now we were solely relying on his income he felt he needed to just buckle down. But I know for others Headway do give them the assurance they need. It can be very difficult living with someone you love who has been affected by a brain injury.

If you are looking for ideas on what you can do at home to aid your recovery, read Brain training.

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What has helped you through the tough times?

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