What Brain Injury Survivors Want You to Know

This is a really good article Michael posted this week on "What Brain Injury Survivors Want You to Know" from the August 16, 2015 Health Care Solutions Plus Site.  Michael felt like it was pretty spot on and "a good read" for anyone who has interactions with him, or interactions with people who have similar issues.  The original article can be found in the link at the end.




I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.
Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.


http://healthcaresolutionsplus.org/lost-found-what-brain-injury-survivors-want-you-to-kno

17 Years Ago Today.....

(Chase MacKenzie at 1 Year Old)

Chase turns 17 years old today, at 12:25pm Eastern time to be precise! What a day that was for all of us. Grandma and Grandpa Casto made the drive to Bloomington for your birth - we were so glad they were there!

Chase was determined to be born that day regardless of the planned c-section! I woke up that morning and went into labor before we even left for the hospital. Created quite the stir when we got to the hospital considering I HAD to have a c-section! Little did we know that was just the beginning of the day's chaos.

After all 9 pounds 6 ounces of Chase was delivered via c-section things got pretty ugly for a while. I remember being in the recovery room and Mike being with me. Then all the nurses scurrying around, Mike being pushed out of the room, and then rushing me back into surgery. At one point, after losing several pints of blood, the nurse went out to tell Mike and my parents I was bleeding bad and they weren't able to stop it - the outcome was looking very grim. Fortunately, by the power of God, they were wrong.

I don't remember anything after recovery until the next day when I was told what happened. Mike looked at me with tears in his eyes saying I scared them all and I was never to do that again. He was terrified of losing me and being a single father of 3.

I spent the next week in the hospital and have enjoyed every minute of watching Chase grow up! He's struggled with more medical problems than any child should have to endure, yet is always smiling from ear-to-ear!

Chase - you bring so much joy to our lives! We're so very proud of how far you've come and we know that you will continue to reach for the stars!

We love you Buddy!

Mom and Dad

Not Much Going On

Friends and Family 

I am sorry for not updating more often, but sadly, there hasn't been much change.  Michael continues to see his neurologist and primary care physician regularly but at this point there is nothing anyone can do differently.  He is having seizures fairly regularly (usually at least one every 10 days, if not more often) and every day deals with the continued dizziness, balance deficits, headaches, etc. with some days being better than others.  We treasure the good days, and pray through the hard.  Our primary care doctor put it bluntly not long ago when he said "it's time we face the reality that this is not going to get better and focus on managing the symptoms as they come".  Not easy words to hear, but words we knew were coming.  

As far as disability goes Michaels' case is still in "ready to schedule" status for the hearing, but no word on a hearing date.  His attorney feels like it should be by the end of September, but who knows when it comes to SSA!  This has been a VERY frustrating process as we watch our finances sink and credit score plummet every single month, but we know there is an end in sight!  

As always, thank you for carrying Michael through in prayer!