(This is a long page, so please scroll down for monthly updated information...Thanks)
Where do I start? What direction should I go? Can’t I just
get a copy of your Roadmap?
Not really, because we are all very unique and our brain injuries differ greatly as well as our backgrounds and our own personalities. You are Unique! I will help you get started.
Revision 1:Sept. 12, 2013
Roadmap 101: "Getting Started"
1) Start writing in a journal every day. Try to pick a time of the day when you are not too tired and find a quite place where you can spend this time alone to reflect.
2) Type out your medications/dosage/times of day you take them along with your medical history and all of your doctors’ contact info and your emergency contact information, print a copy out and keep it close by. Email a copy to your emergency contact and a copy to yourself and save a copy in your email account under a new folder called Medical Folder so you can access this from any location. Update this when anything changes.
3) Organize, Organize, And Organize.
Get a Daily Planner or use an app on your phone like Wunderlist . Make it
something that is easy for you to use. You should start tracking All of
your activities and scheduling all of your upcoming and reoccurring events. Try
to write out your schedule or plan for a day this the night before.Click Here for a short video. This has
made life easier for me when I do this.
4) If you don’t attend one already, look into a local Brain Aneurysm Support Group. There is a great group in Philadelphia at: Thomas Jefferson University Hospital.
Coming Soon: Aneurysm Mentor Program
Revision 2: November 23,2013
Revision 3:December 19, 2013
Brain Injury: “Tell it to me straight”
There are 2 Things I have heard which has made the most sense to me:
1) In recovery with a brain injury, if treated like a race, “You should treat your recovery like a marathon not a sprint” in other words you will see some improvement over time (months and years not days and weeks like most other injuries). So that is why I recommend you start a journal so you can revisit where you where, say 6 months or 2 years ago.
2) Since the time of cavemen your brain has been protected by a hard protective shell called a cranium, once air hits your brain, you will never be the same, never! Now if you had a brain bleed, the blood changes the chemistry of the brain and you will probably be on medications forever. Along with added tools and the surgeons hand manipulation of the brain during surgery, the scientific community will never know how things will turn out as they don’t have a true picture of each individual prior to these injuries.
This is not meant to paint a dark picture of our future. This is something
that I have learned through research and conversations with veteran members of a neuro-surgical teams and rehabilitation specialists. I am here with the intention to share everything that I have learned, both good and bad. Knowledge is empowering when you are putting together and finding the “New You.” and the “New Normal”.
Sounds Simple Enough, Right?
Our body requires certain things to get us through the day and our brain requires even more. After a brain injury we tend to “Hop Back into Things” the way we did before our brain injury and more times than not, we fail or can’t complete the tasks the way we used to. This is frustrating. Frustration quickly steals energy from us and may lead to sadness, being withdrawn or depressed. This is normal. Annoying but normal. We have to create our own “NEW NORMAL”.
THE ANATOMY OF THE NEW NORMAL
(some basics to get your Roadmap started):
-Adequate Sleep and rest breaks throughout the day.
-Exercise (after you check with your doctor to see what you can do)
-Scheduling every activity, even your rest breaks and reviewing it several times a day.
-Not over committing yourself and learning to how to say “No”.
-Eating the right foods. There are thousands of online articles on certain foods that are good for you brain. A free email newsletter that I read is from Dr. Daniel G. Amen. There is also various interesting brain studies he has performed as well. Interesting site.
-Not Missing your Meds. Tip: Refill your weekly meds the same day every week. I would recommend doing this on a Tuesday or Wednesday versus a Friday. (So if the pharmacy needs to call your doctor for a refill you don’t run out). Contacting a Doctor on a Friday is more difficult than a Tuesday or Wednesday. I’ve learned this the hard way.
- Play Brain
Games. App.'s Examples: Lumosity or Brain
Tuner or just go old school and buy a paperback Sudoku puzzle
book. I first overdid it, got annoyed, frustrated and depressed so I would
suggest starting off with 2 minute increments with the games then increasing
the time over a time period. Month 1: 2 minutes 2xday, Month 2: 3 minutes 2xday
and so on.
I am going back to scheduling
because I believe it is of high importance. I recently got off track and
realized I fell off the scheduling train and I was all over the place. I was
misusing precious energy and not scheduling rest periods throughout my day.
By 4 p.m. I was cross-eyed tired, moody and short-tempered. I was
lethargic the next few days as well.Please refer to the top of this page for start off your scheduling routine.
Building up you confidence, not beating yourself up!
Retraining: “Today (everyday), I am going to write out and review my schedule for tomorrow.”
Restraint: “I am only going to dust the living room tomorrow, not the whole house like I used to, if I feel good tomorrow I will dust the dining room. I won’t beat myself up if I can't get it done, I will reschedule it."
Relearning:”I can’t believe it”. Why is this taking me so long?” Some activities just don’t come as easy as they used to. Everything require more time, which depletes energy and requires more focus.
As with most survivors I have
personally talked to, Restraint is the most challenging. We want to hop back in
like we used to. That didn’t work for me or them, in fact, I sank like the
Titanic. Speaking of Titanic, I saw a special on TV. that stated they wanted to
set a new trans Atlantic record and they didn’t want the extra life boats on as
it would detract from its grand façade … So they went too fast and overlooked the
obvious. We all know how that turned out. Image if they stuck to their original Roadmap/plan and schedule? Planning and creating your own Roadmap may help you from sinking yourself.
You Can Do This. Start Now!
I first treated setbacks as major obstacles and was acting and living around these as a "Doom Theory “for my future. I only wished I had someone be there to discuss and point me in the right direction that this was not so. I have a terrific support system and yet I internalized this and thought the worst of it all. I was actually creating my own road blocks for my own road map in becoming a brain aneurysm survivor. What kind of setbacks? An additional ischemic stroke months after the aneurysm: ongoing seizures, dystonia and weakness on the left side of my body, constantly being tired and feeling like I'm not contributing enough to the people around me.
I learned to live from these setbacks and realized that I occasionally have to reset my brain and my thinking and actions when this happens. Sort of like when your phone acts up on you and you just have to power it down and reset it. Yes it's annoying and you can't let it keep sucking the life out of you. Reset, Power Off, Reboot and realize that a new plan must be put in place. This may include new doctors, new medications,new therapies, and yet again another new schedule.
When I maintained
positive focus and positive thoughts, most of the times I received positive
returns and outcomes. When I lost focus or became negative or thought negative I
slowly went into a downward spiral. Maintain daily motivation and positive inspiration. Yes,there are apps that can provide daily motivational messages. I would also suggest books,I liked "The Secret" by Rhonda Bryne and "The Present"-(link to short video) by Dr. Spencer Johnson. What also worked and still works for me is watching your favorite motivational movies. My top 2 are "Rocky 1" and "Rudy". Look how far you are moving along. Give credit to yourself for your accomplishments! You are slowly turning into a SURVIVOR with your own Roadmap!
Special thanks to E.G.C. and L.C. for helping with the website.
Please read the Disclaimer before contacting me
Revision 1:Sept. 12, 2013
Revision 2: November 23,2013
Revision 3:December 19, 2013
Revision 4:January 10, 2014
Revision 5: June 20th, 2014
Revision 6:September 8,2014
More Coming Soon:
( My new goal is to update this page by October 10th ,2014 )
Contact me after reading the Disclaimer. Thanks!
“It’s not the cards you’re dealt it’s how you play the game.” via Chris Pardo