Posts Tagged ‘Brain injury rehabilitation’

On My Own

September 24, 2014

“We’ve done all we can. It’s up to you from now on.”

I reached a point in my recovery where I was released from therapy, either due to completion or insurance coverage limits. Kind of like stepping off the end of a gangplank, unsure of where I might land in the World of Normal. But I cautiously took that step, and rarely looked back. It really was up to me now, with assistance and encouragement from my family and friends.

A roller coaster ride at first, my life eventually leveled out. I continued physical therapy at home, with the aid of a guidebook provided by my therapists, a TENS unit to stimulate the muscles in my affected leg and foot, an AFO for support, a blood pressure monitor, and a diabetic blood test kit.

It was a huge struggle just to get out of bed every morning, much less do the prescribed exercises. I became lightheaded and passed out frequently. I was lost, anxious, and had frequent panic attacks.

I would not have progressed this far without my family. They were my lifeline (literally), my coaches, my critics, my cheerleaders.

But, ultimately, they could only do so much in my journey to recovery. It was up to me to get myself motivated, even through the cloud of frustration, depression and grief.

Through it all I relied on my belief in God and the power of prayer. I was told that while in the hospital ICU, I was administered Last Rites. I was that close.

I remember absolutely nothing of that first week of my hospital stay. My wife never left my side. She was my guardian, my protector, my intermediary with the doctors and hospital staff. My earthly angel.

When I recovered enough to move out of ICU, my therapy began. Simple stuff, like learning how to eat, swallow, walk and talk. Things I used to do without thinking. I was too weak to be embarrassed or regretful. I felt like a human pincushion, when I felt anything at all. Then came awareness, like the world was opening up to me. Sort of like being born again.

It is very difficult to describe the stroke and recovery experience to someone in terms they can understand, especially when I still don’t completely understand it myself.

So, my journey continues, on my own. My advice to those on a similar path? Stay focused. Be patient with yourself. Do everything you possibly can, learn from your mistakes and how to graciously ask for assistance. Adapt what you cannot fully get back; be inventive. Recovery can be a life-long journey, never give up. Believe in yourself, even when no one else does. Celebrate your victories, no matter how small. And most of all, have faith in what you can accomplish when you set your mind to it. Love your family, even when they don’t seem to love you back.

And remember, you are never truly alone on your path to recovery. There is always Someone looking over your shoulder. Rely on that Higher Power.

Slow and steady wins the race.

More information on therapy and rehabilitation after stroke.

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

January 6, 2014

Barbara J. Webster, Lash & Associates

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.

(copied from Brainline.org)
http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.html