Lost & Found: What Brain Injury Survivors Want You to Know

Awesome article.

This is a must you should do. Look at the SMALL things what you can do now than before but never look at big things you can't do yet.

Eventhough I have a therapist to help me, I still have to depend on me to be my own therapist on my own time. Yes, i can say can't because I can't get to comfortable with therapist doing all the work for me, I have to do things myself too. No one can't get me where I want to be besides God gave me abilities to do it, help from therapist and people and support but the results is You being the main character.

Thank You this explains a lot and hopefully will help with my frustrations.

This is the most helpful info to in the understanding of what a person with a brain injury goes through that I have come across. It is to be shared and I will. I suffered a brain injury during a fibroid surgery. I had major memory loss and cognitive problems that basically put me in a state of intermediate dementia. The worst part no doctor would acknowledge I had a problem. So, I struggled to live my life and keep a job. It took 6 years to get a doctor to even run a test. Unfortunately, he basically felt I needed to get more sleep and exercise. But, he did refer me to the best speech therapist who help me understand my condition and give me some options to help me with recovery. I still struggle on my own but gratfeul for every milestone and the fact I have a medical background.

So very true I'm 2years and I'm still trying to learn my brain some days good some days bad people will never understand us

There is a way around this... by the description you have not been told.... for most doctors dont deal in nuerogenics..your reactions are normal to the condition...and there is therapy to improve the condition. ...

So many of these are true and hard to explain to others. It seems as though they read more of the pamphlets from the Dr office and then just say I know I understand and they don't and I wouldn't wish on anyone.

This is exactly how I am, but no one will listen to me, the doctors and psychologists and psychiatrists say it is lingering PTSD and depression. They won't acknowledge brain injury to help me, they say if it was brain injury that it should be cleared up by now. I've been doing all the work on my own with no help and understanding and as I'm typing I am crying cause I need help because I feel like I'm going crazy and just want to give up.

I don't know how to carry on with life. I've had an AVM in 1996 and a TBI in 1998.

This is perfect and if i could just print it out and hand it to everyone in my life that'd be perfect. I think my biggest problem still today is people not believing I'm sick because I don't look sick, after 16+ months i promise I'm not choosing this. Also the more stress I'm under the less I remember so please take it easy

Suzanna, Sept.29th, Please reach out to the Brain Injury Assoc. of Maine.  #800-444-6443 or biame.org 

BJW

Author from Mikkeli, Finland Kati van der Hoeven 40-year-old ex- super model whose career was cut short at 20 years of age when she suffered a stroke. Because of the stroke orders no longer, go from brain to muscles.

Her thoughts were still very clear but even muscles needed for eating and talking were paralyzed. Van der Hoeven has been trapped inside her own body since the stroke. State like this is called; Locked- in syndrome.

Van der Hoeven communicates through her eyes. She works on her PC with a special program, small reflecting sticker is placed to her forehead. A web cam like infrared camera is placed above her screen and a small reflecting sticker is placed to her forehead, this is her computer mouse. With this, she is able to communicate with her friends via the internet, and keep her blog and write articles for magazines.

Kati has not let the syndrome prevent her from living. She has gotten married in December 2014. She holds dinner parties, travels, goes shopping and to the movies. Still cares very much about her looks. She is very interested in Japanese culture. She even studied Chinese and Japanese cultural history in the Open University.

All this requires willpower, patience and faith in life.

For instance morning routines take so much more time nowadays but just because I´m so determined I have managed to keep my old ways. I want to look good no matter what the situation. I guess you could say that this is my one way of fighting back and not giving in to somberness and depression.

Big part of Kati´s day goes writing. Only therapies, meetings and going to downtown break the day. Evenings she is with her husband.

According to Kati the secret behind the people positivism lies in the fact that the patient really takes her / his time to deal with the sickness.

You do not have to go on with life impassively and it is ok to feel sorry for what you have lost. When you have really dealt with what happened and you have accepted your new reality, you will find a higher kind of happiness and joy. With this your will to live will become even stronger.

Kati says that the more you appreciate life the deeper you go. She reminds us that it does not help anybody if you keep living as if everything revolves around the sickness. There certainly is life after sickness and you just have to go and live it. http://katilepisto.fi/en

Thank you

I've had a brain injury for almost 14 years and it hasn't gotten any easier for me. I have a husband who has complex PTSD and it's very hard. I have to put myself last most of the time even though I can't cope with things myself... Trying to figure out how I'm supposed to cope with this life.

I work with all kinds of brain related people its a very rewarding job when people start to respond to rehabilitation the brain is a complex thing takes time and patience but in the end its amazing how it can repair its self

This is so helpfull to me and describer most of my problems and I'm sure can help my friends and family cope with different things that they think are just me. I love that you understand and I'm not the only one out there because it sure does feel like it. Ive been thinking about going to a brain injury group and this article has helped me make my decision. I feel being around people like me may make me feel more apart of this world not just an inconvenience to my friends and family who have no choice but to put up with me. Thank you so much other survivors!!!! Matthew Rayner

Wow!! This was helpful to me. Mirror image of what I've been trying to get out of my mouth. I'm just starting the doctor pass me around process for multiple concussions. It's hard to get things clear where they understand me. I will show it to my doctors.  Thank You so much for SHARING this article.

Hello my name is Rudy Maddock. I have a brain injury also. My life is wonderful, God is so great and has done so much for me. One thing that I see is every or most are very different. Not all injury are alike but all have God that's why were all still here.

I am a survivor and reading this feels like my own words, well written.........❤️

Such great information and advice !

This is great and so true!

These explain me pretty much to a T. And my tbi was at birth, so I can only imagine how confusing and frustrating these changes are when a tbi occurs later in life.

Thankful for this article. I couldn't read all the comments to see if anyone with chiari malformation could relate to this (I might read them all on my next sleepless night), but I can. Chiari malformation is a condition where part of your brain (cerebellum) hangs out of your skull and possibly into your spinal canal. My chiari malformation has caused a syrinx (cyst in spine pressing on my nerves), scoliosis and problems with my neck.

Chiari malformation doesn't just suck because of all the different symptoms, but also because you appear to be healthy so people don't understand that you're truly suffering and impaired. One moment I'm fine and the next I'm not. Some days my symptoms are more physical, such as horrible head and neck pain, right sided weakness, my right leg drags, pain and tingling throughout my body, lack of coordination,  or drop attacks. Other days my symptoms are not something you can see when you look at me: confusion, difficulty with memory, speech problems, dizziness, trouble focusing, irritability due to over stimulation and depression. 

I don't think I would ever want anybody to be able to look at me and see my invisible illness, but looking well on the outside when you're not on the inside can be extremely frustrating at times. People may suggest you just need to take certain vitamins, exercise or you're faith is just not strong enough for healing. You know friends are disappointed when you back out of something because of your illness. You wonder if people think you're lazy, attention seeking or weak. It's bad enough when you wish it would all go away but it won't; it's even worse when you finally accept the way you are and others don't. You want people to understand what you barely understand yourself.

Thanks for this article.

I have a rare malignant brain tumour that surgery, chemo, or radiation, will not shrink. ...but can cause more damage. I read this article and found that I related to each and every one of the symptoms and more. Even though my problem has not been "fixed"I still have those around me that either forget because I look nearly normal on the outside, and imprisoned on the inside.  In my case, it's impossible to get others to accept and understand without  accepting their own fear and sense of loss...no matter how embarrassing or angry they say the symptoms are. As the tumour grows, so do my symptoms. There is nothing I can do about that...and yet so often they think it is in my power. If that were so...would not the pain? Would not my ultimate death?

Juanita van Tol Martel