When Get up and Go is Gone. Lack of Initiation and Motivation after Brain Injury

 

Words Start Now on the red background screen of mobile phone
Image from Freedigital

Not being able to initiate activity and a change in levels of motivation after brain injury  can be a challenging and sometimes life limiting outcome to live with.

 

During a training session for community support workers I asked the group for the number one issue they struggled with, assisting a person living with brain injury.

I had jumped ahead and assumed that number one would be either finding meaningful stuff to do, or challenging behaviour.

Surprisingly, the number one issue was neither. It was the ethical dilemma of getting someone to do something they did not seem to want to do. Commonly termed lack of initiation and motivation after brain injury.

How do you push someone to do something if they are not really willing to do it?

How do you know when it is OK to push someone and when it is not OK?

I use the word “push” here because this is how it can seem to a supporter. When a person has low motivation, or difficulty initiating activity it may need physical guidance or strong support to do what is needed.

 

Old dictionary with magnifying glass on the open page
Image from Pixabay

Definitions: Initiation, Motivation after Brain Injury

There are several terms you might hear in relation to this topic:

Initiation – This is like your starter motor giving you the ability to begin, or to start something. Lacking initiation means difficulty starting activities or tasks. There might be a reduction, or sometimes an absence of “get up and go”.

Motivation – This is what drives you to achieve something and follow it through. A lack of or reduced motivation means you are lacking the energy to start and /or to keep going.

Adynamia –  Meaning literally no strength. Not being able to do things.  It might seem like apathy or lethargy except that it does not go away.

Abulia – a lack of motivation “Abulia is a state of diminished motivation in which an individual may appear apathetic, disinterested, asocial and emotionally remote.”

Apathy – I include “apathy” here because it is often used in descriptions about reduced motivation. I believe this word has a more deliberate tone to it. Apathy is about lacking engagement, interest, or feeling whereas loss of motivation is loss of the physical drive. I don’t believe it is so helpful to use this word as it sounds like something a person can get over.

Akinetic mutism – is an uncommon outcome and is the most severe form of lack of motivation. A person does not move or speak. Unlike “locked in syndrome” the person is not paralysed, but has no drive or motivation.

 

What You Might Notice With Lack of Initiation and Motivation after Brain Injury

‘Genna’ would sit watching television most of the day telling her supporters that she was planning to go back to work. Outlining she would update her CV,sign up for a refresher course and contact her old boss. Genna had been saying this for many months and while she could talk through the plan, she did not get to take the first step.

‘Pete’ would lie in bed until someone came and guided him into activity. If no-one came he would remain inactive and in bed throughout the day.

 

The outcomes of reduced initiation and motivation can vary in degree and severity. You might notice any of the following:

[unordered_list style=”tick”]

  • Not able to start things off, but once started you are OK.
  • Less drive, or desire, to want to do things. Even interests or activities you were passionate about previously don’t happen. Sometimes even with encouragement and support nothing happens.
  • Able to explain the plan, including the steps to be taken, but not able to take the first step. You might not even be able to ask for assistance to get started.
  • Always talking about the things you are going to do, but never get around to them. Sometimes this gets mistaken for being “lazy”. It is caused by damage to the brain.
  • Finish one task but not start the next.

[/unordered_list]

 

Tips and Suggestions for Changes in Initiation and Motivation after Brain Injury:

Make things happen in words on three rainbow coloured circles.
Image from Pixabay

Remember – it is the brain injury. It is not laziness, or a lack of will to do a task.

Using Motivators:
  • Begin with what the person is passionate about. Explore and find things that are of interest and find ways to engage in enjoyable, meaningful stuff.
  • Work together to find out what is motivating (and what is not). Look at how to incorporate this into strategies to increase motivation. If music is a passion maybe you could incorporate music into an activity, or as a reward on completion.
  • Be prepared to change motivators once they no longer seem effective.

 

Using Reminders,Prompts and Cues
  • You may need to provide physical and/or verbal reminders. This might mean physically guiding a person to begin a task; A volunteer gently lead Pete to the kitchen giving him a checklist to prepare lunch. Or giving a verbal starter “Jim get up out of bed now”.
  • You might need to prompt or cue just to get started. Or you might need to do so for each step, every time.
  • Use an alarm or timer as a reminder to start something, or change to something else.
  • Encourage ways to find cues that work for each person. Work together to review what other people do; look at what has been successful in the past.
  • Match the best cues for the person and their life: Visual cues such as checklists, signs, calendars, whiteboard notes. Using phone Apps, or other familiar technology to prompt steps.
  • Review, reduce or cease any intervention once it is no longer needed.

 

Motivation Goal setting A cartoon figure climbing graph blocks to a target at top
Image from Freedigital.com
Using Goal-setting
  • Focus and build on successes. Talk through difficulties / failures as they arise.
  • Work to set goals incorporating both what needs to be achieved and what is enjoyable.
  • Set goals that motivate the person both short term steps and larger goals. “Finish the housework and we can go to the Mall”. “Keep up your exercise program for 6 months and you will be able to walk further”.
  • Work together to set realistic expectations, and agree on ways to overcome difficulties as they arise.
  • Provide the amount of support needed to ensure successful participation in agreed tasks / activities.
  • Wherever possible give choices and options of what to do, and when. Try and limit the opportunity for the person to say No, or to do nothing.

 

Structure and Routine
  • As much as possible maintain structure, consistency, and a predictable routine.
  • Plan days so that activity is spaced and there is not too much time without activity.
  • Break tasks and activities down into manageable steps.
  • Use the preferred method of recording steps such as in mobile phone, printed checklist, whiteboard list.
  • Work out routines that are familiar and link tasks that go together.

Professional help may be needed to determine whether other factors, such as depression, are causing a lack of motivation.

 

Resources About Initiation and Motivation after Brain Injury

Project LEARNet:

A tutorial on Motivation from Project LEARNet which focuses on children and students but great information for anyone on what motivation is, and suggested strategies.

 

An Investigation of Motivation and Goal setting after Acquired Brain Injury: Implications for Rehabilitation

I confess right here that I have not read this PhD thesis. I include it here because it does appear to provide a detailed look at the issue of lack of motivation for any of you interested in more detailed analysis.  Your feedback would be great if anyone has time for a browse.

Motivation and Initiation Fact Sheet

A short Fact Sheet with information about lack of initiation and motivation from Synapse.

 

It would be great to have a few more resources so please add any information about lack of motivation after brain injury in the Comments below.

 

 

This Post Has 30 Comments

  1. brainfan

    I’ve read a number of your posts since finding your blog a few days ago. I’m so grateful that there are people like you out there who work so tirelessly to help people like me. I can’t imagine how frustrating it must be at times. I only wish the people in my life had a fraction of the love for others that you have. Unfortunately, I was tossed aside when my brain damage became too great to continue working. So my ex found a new paycheck, had an affair, and broke up our family, leaving me with next to nothing and a very difficult time trying to make a life with it. Her family has millions of dollars, but they won’t help. In fact, she took me for everything that she could. And I’m not even the violent, angry type. I just have a lot of difficulties including what you talk about here. I just started reading about this symptom and it’s wonderful to finally get a reason for why I do what I do! Or don’t do what I don’t do!

    My ex made the breakup as heartbreaking for me as she possibly could. It brought me to the brink of suicide. A few minutes before I was going to do it, I was talked out of it. But the person who talked me out of it called the police. Now the few old friends that I had turned to for support dumped me. I almost killed myself, so I was crazy.

    I just finished bickering online with some people that I know. They were tearing apart a man for killing himself. The guy had depression and bipolar disorder. There are cruel, thoughtless people everywhere.

    1. Melanie Atkins

      There are times I doubt myself and wonder why I write these articles – there is so much information, and so many people with more knowledge around. I was having one of those times when I received your message. Thankyou so much for your encouragement, kind words and I am so pleased you have found some of the information useful.
      So many people do not really understand the impact of brain injury. The experiences you describe after brain injury starkly remind us all of the struggles and strength people have.Thankyou Regards Melanie

      1. brainfan

        I understand self-doubt. And I also understand how you might look at your posts and see that there aren’t a lot of comments and think that it’s a lot of time and energy that is not bearing fruit. I see that on a lot of blogs and sites. It doesn’t mean that those sites are not helpful. In this case, the information may wind up giving much needed hope to those who are scouring the web to learn about their problems.

        You’re right: there IS a lot of information around. And there ARE people with more knowledge. But there’s room for websites with a wide variety of focuses. There are websites that focus purely on the research end of things and others that focus purely on personal experiences. What I haven’t seen is a blog like this where you combine the two, placing the detailed information in layman’s terms and including the caregivers in a huge way, while providing interventions that may help improve outcomes. The goals and checklists are overwhelming to me, but I’m sure they’re very helpful to caregivers.

        There is also the fact that this site exudes human compassion. Believe me: there are times when people like me are so alone. We’ve been deserted by so many people. We get embroiled in medical/legal problems where our pleas for understanding are met with demands and cold expectations that we perform as though our problems don’t exist. Even those people who stick around sometimes listen to us explain that things just don’t work anymore, but they tell us to “just do it” anyway as though it were that simple. It’s these times especially when we’re inclined to turn to the web for information that at least validates our difficulties and heartaches. And once in a while I find a person like you who makes me break down in tears because I see that someone out there invests so much of her time to truly understand and help, even though the feedback on the internet isn’t always there to let you know that you’re reaching people. And I’m sure I’m just one of many!

        1. Melanie Atkins

          Thank you, Thank you, Thank you. This means more than I can say.

      2. Marilyn S Ralston

        I have a massive TBI; I read when I feel no one understands me-I don’t understand my self because of negative circumstances. I’m lost and don’t know where to turn. Right now I’m angry and depressed since I don’t do tasks quick enough and/or the way someone else would do the task. I don’t answer yes or no as expected. I try but it never is good enough; I’m feeling sorry for myself. I just need understanding. I feel very useless and I know I’m not. I can’t live up to others expectations since they don’t understand the TBI. I’m 67 and have had this TBI since March 31, 1986. If you feel I’m feeling sorry for myself please tell me. I’m in a rut and struggle to get out of it. Thank you for time. Marilyn Ralston

        1. Melanie Atkins

          Hi Marilyn, I am not thinking you are feeling sorry for yourself and I do know you have reached out to a fellow woman with brain injury offering words of support. Thank you.
          30 years of living with a brain injury through a time when brain injury was (and still often is) poorly understood shows strength. You also describe just some of the difficulties you have been living with for a long time now as a result of the TBI. After all this time I could imagine that professional support might have stopped – is there any assistance you might find locally during difficult times. I appreciate your openess and thankyou for writing. Regards Melanie

          1. Marilyn S Ralston

            What/Whom would you suggest? I live in a small town, Kentland, IN I go to a Pain Care Center, Lafayette and have had recent tests,EMG, CAT SCAN and an EEG. I have an appt. this month to HOPEFULLY see what the results are. Thanks so much for your support, Melanie. Sincerely Marilyn Ralston

          2. Melanie Atkins

            Hi Marilyn, I am so sorry to take so long I had put this aside to see what I could find out and now realise I have not replied to you. I hope by now that you have the results of your tests. More than that I hope there has been some useful strategies to come from it. It is difficult to suggest specifics as I am not familiar with your home area – I am hoping you have had some assistance post testing. Regards Melanie

  2. Sarah

    I have tried for the past 2 years to explain to everyone that I know what I need to do I just can’t do it! They say well just push yourself, just do it. Ok well if I could do that it would be done! My abi worker gets mad because I have goals and things I need and want to do but I do nothing. My one and only friend rarely comes around anymore. My mom is scared cause she is getting old. My time with my worker is over in one month at which time I will be on my own. I am angry that no one seems to understand and they blame me for everything I don’t do and I hate myself for not being able to do normal easy things. Some days I can get everything done but most days I can barely move so everyone uses the days I can function to accuse me of lying and being lazy on the days I can’t even get up to pee. I take antidepressants but the neuropsych dr said I am not depressed? and the pills don’t help anyways probably because I can’t get off my ass to get them and take them, even when they are right in front of me i can’t take them unless someone tells me to but there is no one left. I don’t understand why people say my life matters when all they do is me for existing. I can’t do this anymore.

    1. Melanie Atkins

      Sarah it sounds like you are in a really difficult space at the moment, I really appreciate you taking the time to share your experiences. It is important for people not to feel alone when struggling with the many issues people living with brain injury may encounter.
      Based on my experience I would encourage you to continue to explain to the professionals supporting you, how you are feeling at the moment and to explore with them other ways you can be supported through this challenging time. Thankyou again for sharing your experience. Regards Melanie

      1. Sarah

        Thank you 🙂

        I only have one month left with my worker because government cutbacks means there is very little services avilable unless you can pay which I can’t. I have tried using lists, daily schedules, whiteboard, alarm timer things but the problem isn’t not knowing what to do or even how to do it, the problem is I can’t do anything! Like sometimes I sit here all day barely able to move! I don’t know how else to explain and when they keep trying to help me organize my day and such I get angry because I know how to organize my day! I can make a list right now of everything I need and want to do, even how to do it I just cannot get my body to get up and cooperate!

        1. Melanie Atkins

          From a distance this is difficult to be able to be useful. Your description sounds very much as though the injury to your brain has damaged your motivation and initiation. Unfortunately the experiences in planning and drawing up lists yet not being able to act on them is how damage to motivation and initiation is often described. I am so sorry that I can not give more practical help or suggestions. Maybe someone else reading this might have had similar experiences and be able to add to our conversation, or maybe support networks more local to you. Melanie

    2. Marilyn S Ralston

      Dear Sarah, I sure identity with what you are going through. I have a lot of problems, too, -I feel this way-you’re not alone! You’re in my thoughts and prayers for God loves us <3. I pray daily and at night for His help and won't quit praying. Marilyn Ralston (massive TBI for almost 31 years).

      1

  3. woos

    hi i am a carer and mother, my daughter got run over when she was 17, and sustained a severe brain injury. i watched her strapped to machines that kept her alive with her head swelling to more than twice its normal size (front half of skull removed). watched her die and be brought back to life. i thought nothing would be harder than that. but here we are fifteen years later, she is now able to talk, eat, prepare basic food, walk with some difficulty over short distances. she has epilepsy, with incontinence and problems with balance and left sided weakness. all of which we both cope with very well. but the hardest thing of all is the lack of motivation. we use a white board schedule planner. she can no longer read so everything is represented with pictures. she will make commitments to do things then always backs out. she just wants to lay in bed all day watching cartoons. the same one line over and over again. she seems happy and laughs every time she sees it.
    i am so worried about her, that she’ll have a stroke or something. her poor body is getting weaker and she constantly has hives now. she will always go for sugar boosting foods which is causing her to gain weigh, making the situation worse. i try to understand but struggle so much with the loneliness and isolation. i have tried getting her to commit to her chosen activities, using treats and rewards for completing an activity. these work for a very short time then we’re back to the nothingness again.
    i found your blog after a particularly difficult time and have it saved to my favourites because i keep coming back to it when i need that reminder that this is brain injury not laziness. she would love to get up and get on, but her get up and go has got up and gone, its not a choice. she doesn’t want to be stuck either.
    thank you for your understanding.

    1. Melanie Atkins

      I am so pleased the article was of some use. “It’s the damage to the brain. It’s not deliberate. It’s not a choice” I often say to supporters this is a “broken record” kind of statement that you need to say to yourself over and over and over. It is not easy tho.

      Please keep in touch. I have been intending to write an article on looking after yourself – your letter and thinking about you and your daughter working so hard has prompted me to get on with writing it. Thankyou for sharing your story. Regards Melanie

  4. Cassie

    To Sarah,

    I find many similar issues – I actually think the world is so complicated today, and all help happens within specific programs, so there are few ways to go out and see what is out there, but this is a piece you might find helpful – plan to go downtown or anywhere you might want to be, and go there for lunch – go out one or two days a week.

    If you put your energy onto getting out there, you will have surmounted one of the blocks to making any change happen. I’ve worked with my brother with his brain injury – and it really helped when one of his earlier residences, had a rule that every one of the six residents had to go out, for the family leaders could not leave anyone behind alone.

    That rule was perfect. They took all their residents to Adult Ed, two evenings a week – and each attended classes at their level for almost free. When I saw that my brother loved being there – but could never have gotten there on his own, even if he could drive – I set him up for taxi pickup later when he had moved to a different town. It was a small price to pay, and the cab brought him to and from Adult Ed in that town.

    I think it is terrible that our society is so afraid of pushing anyone – even gently by setting up transportation – that we leave millions of people who would like to do things, vegetating under group led programs, for we leave all the “choice” to them – but who can choose anything and go through steps to explore, except the most active among us? It takes a push, some reassurance, transition support – help with fitting anything new into a schedule, setting up peer networks even – outside of professional programs, like two peers who would meet regularly for lunch.

    I have a hard time going out to start projects, for I feel torn between several, and by the time I’ve worked at a job that just brings in money, and then rested at home, watched TV – I don’t get out there either – but it’s HARD to do, when there are so few places for people not involved, to go.

    So I’d say, don’t wait to choose one project – make getting out there, even alone, a next step, and from there, you can study maps and visit places you think might interest you, so you can see upfront, not imagine from inside your own home.

    1. Melanie Atkins

      Thankyou Cass for your reply to Sarah. I believe it will also be useful to others. I really like your reminder that we can get very focussed on group activities rather than looking at how people can join in regular recreation, activities, classes. It seems unfortunately that transport is an issue across many countries. Regards Melanie

  5. Jenna

    Well, I feel a bit better about myself than before I read the article. Having a `mild`brain injury and having been Type A, psychotherapist, fixer of all things and general go-to resource person, my life has changed drastically. I appear fine, but seem to have lost my ability to self-start (along with memory, and some executive functions and physical side effects).

    I am my only support person, and present entirely too well for people to understand that I am becoming a lump with little reason to get off the couch etc when alone. I just can`t summon up the energy and I have no idea what to do. And yes, the problem solving is now a problem! I don`t know where to look for what I need, as I don`t actually know what it is. Thank you for your pages – they are helpful!

    1. Melanie Atkins

      Thankyou Jenna, I am so pleased you have found articles that are useful. It is great to hear the work is helpful. Lack of motivation can be so difficult for others to understand and the experience you share here helps to understand how difficult it can be. Thanks so much. Regards Melanie

  6. Luanne

    Attention all brain injury survivors! Your inactivity or inability to complete tasks has nothing to do with MOTIVATION OR LAZINESS! I too have a brain injury and I’m not unmotivated or lazy. It’s the way that our brain functions now. For many of us, our injuries have affected our executive functioning skills. Executive functions are things like, planning, organizing, initiating..they are all of the skills you need to complete daily tasks. Our minds work differently so we need to approach tasks from a different way. For example, you might want to clean your bathroom, but it just doesn’t happen. You hate that it’s not perfectly clean, it annoys you every time you use it, but you still don’t clean it. Try looking at it from a different perspective. Either in small steps or a totally different way. I have a weekly calendar that sits on my kitchen table. Each day has several time slots from 8am – 10 pm. It’s helpful for me to write down ‘clean bathroom’ at a specific time. Not only does this help me not to keep thinking about it over and over, the decision has been made. I plan out my day the night before. I’ve been doing this for several years and I find it extremely helpful. Try by scheduling in one thing a day, just one! Keep it simple. Maybe you need to sweep your kitchen floor. Schedule it in maybe right after breakfast. The key is to give it a specific time. 10 am etc. The calendar also helps me to relax about nagging tasks and to mentally prepare for the next day. When I wake up the next day, I know I’m going to sweep the floor after I have breakfast. Once complete, cross it off or put a check mark in front of. Pay attention to the time of day that you feel more alert and have good energy. Many of us will find that before lunch works well, before we get tired. Or, after an afternoon nap. Don’t let this get you down! We think differently now, and that’s ok. Our brains are now more open to different approaches. Brainstorm with other survivors and you will figure it out one step at a time, one day at a time. All the best!

    1. Melanie Atkins

      Thanks again Luanne, great tips to help manage reduced motivation. Regards Melanie

    2. Bill

      Luanne I have a similar routine that has worked for me as well. I keep (most days) a list of items to be completed and cross off when finished. If not complete but attempted I may note next to item what went on (i.e. Left phone message but didn’t speak yet etc…). I often feel lack of motivation to accomplish things I’d like to do and continue to try to understand this shortness at times. Prior to tbi I was a fairly high motivation guy. I do just try to do my best each day, whatever that may mean for that day, and just be ok with that effort. Not always easy, but can help make you feel a bit better if you get back to that understanding of yourself and where YOU are at and coming from.its personal for each of us and take keep forging ahead one day at a time. Love your response as much of it rings true and I agree with completely. Best wishes all:-)

      1. Melanie Atkins

        Thankyou Bill for taking time to share these strategies and your own experiences. Your suggestion of “get back to that understanding of yourself and where YOU are at and coming from” is an important strategy. Thanks again. Regards Melanie

  7. Tammy

    I was diagnosed 2 years ago with a 5.4 cm frontal lobe brain tumor. A month later, I had a craniotomy to have it removed. They say my type of brain tumor grows 1-2mm per year. My neurologist said it could have been growing for up to 25 years. I was 35 when I had surgery.
    I thought I was crazy. I had mental symptoms for a good 5 years before finding out it was a tumor. I took those self diagnosing test, I swear I had every mental illness symptom. A year before being diagnosed I went to mental health services for one on one sessions, group sessions and started antidepressants. I started having mild seizures that my spouse didn’t recognize, until one day it was obvious to him I was. I went to emergency where they diagnosed the tumor, one month later it was removed. I was put on a steroid Dexamethasone during the month I waited for surgery so I wouldn’t have anymore seizures.
    There are many side effects to an acquired brain injury depending on location in the brain. The frontal lobe of the brain is responsible for many things, including behavior and emotions. It is also involved in planning, problem solving, personality and organizing.
    I definitely Still struggle with daily planning, motivation and my emotions. I do similar to what Bill and Luanne do, take it one day at a time and try not to be to hard on myself. I do the best I can, some days are better than others.
    The best and hardest thing for me was to except that I have some type of damage to my brain and may think, feel and act differently than the majority of the population, but I’m learning to be ok with it.

    1. Melanie Atkins

      Tammy I apologise that this reply is so long coming. Thank you so much for explaining for others the difficulty you have had and continue to have with diagnosis and treatment. And that you had to work this out without support of health services. Why are we still not clear about diagnosing brain injury? I am sorry you have had to tread this path – and so many others as well.

  8. Lucina

    Thank you for your insightful information Mrs. Atkins.

    I find this as a relief to read that I’m trying to be useless, but my brain just won’t work with me.

    As a high school student I find myself scared that I will never get through college or have a real life.
    I was in a vehicle accident almost 7 years ago and hit my head on the radio console in our truck.
    I had no visible damage and was not tested for any kind of brain damage despite complaining of temporary amnesia.

    3 years ago I went To a neurologist because I was (and still am) having daily headaches. (Still haven’t found the cause)
    While the doctor did very little to help me, we did find out through an EEG that I had abnormal brain waves and was sent for an MRI. The end results were that I have a disconnection of some kind in my frontal lobe.

    I haven’t noticed these problems so much until more recently, because my parents mostly decided that I was just being a stubborn kid and not getting things done in years past, but I’ve had problems with things like:
    ~Remembering what I’m currently doing
    ~Paying attention to people
    ~Little movements or sounds from anyone or anything in the room can completely distract me from my work
    ~I can’t even seem to do the things I want to unless I do them with other people. (Not even read fantasy books, play video games, or go to my sports)
    ~Concentrating on one thing for a long time is even worse.
    ~I’ve literally just stared down at my hands in frustration because my brain can’t workout the process of playing my instruments. (Piano, cello, ukulele)
    ~Sometimes I focus so hard on getting one thing done that once I finish I have to take a nap.
    ~My regular doctor is saying that I’m depressed because I don’t “want” to do things, but I’m not depressed, I’m just frustrated.
    ~My friends used to fight over having me on the bible quiz team and would claim that I had a “super computer brain”…
    ~I feel like I’m a burden on my little sister because I rely heavily on her willingness to motivate and help me with most tasks.
    ~I’ve broken down into tears so many times while trying to do things because I’m angry at myself for just laying in bed or staring at the walls for hours
    ~ If I need to complete homework by a certain deadline I usually have to stay up late at night (2-4 am) because I can’t focus when other people are awake.

    I can’t seem to explain this to my doctor…or my parents. I’ve been going to many doctors for unexplained and daily headaches, but I feel like I’m probably getting them from the stress I’m causing myself while trying to bull my way through this block that my brain seems to have.

    I Want to get a good education and I want to Enjoy life to the fullest.
    I love adventure and testing my brain beyond my normal life.
    I love trying to learn languages and study abroad.
    I’ve always dreamed of becoming a FBI or CIA agent, working in criminal forensics, joining the military, or (of course) going to space (:P).
    But I feel like I’ll never make it because my dumb brain just won’t work with me.

    People keeps saying I just need to get up and go. I keep telling myself to.

    Is there anything more I can do, something that maybe I’ve overlooked?
    I won’t give up on myself and I will fight through, but if there is something I’m missing that could help me out…

    Thanks for letting me get this out.
    I was going to delete this because I don’t like to complain, but I’m hoping that maybe one of you that has dealt with this for so long can give me some guidance or tips.
    Best wishes,
    Lucina

    1. Melanie Atkins

      Lucina, You sound like a very resilient amazing person who has not let brain injury stop life goals. I am not sure what more I can offer except to say that unfortunately, all over the world I have heard stories such as yours about people who have been misdiagnosed or not diagnosed with brain injury after accident or illness. It amazes me that across the world brain injury is still missed and people are suffering because of it. What you describe sounds very much like the results of brain injury. Headaches are also a common outcome – some people have reported some success with reducing stimulants such as coffee, Coca Cola, alcohol. Your letter does not sound like a complaining one and it may help others struggling in similar circumstances. I am not sure if you saw the article on misdiagnosing brain injury https://www.changedlivesnewjourneys.com/diagnosis-of-brain-injury/
      Thankyou so much for sharing.
      Regards Melanie

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