Tom's Neuro Notes

First Day, Now What?

First Day, Now What?

Before I begin Anything else,  I have three core thoughts that I want you to keep in mind from here on.

You are NOT ALONE.

THIS is going to be a journey.

You are not alone, there are countless families, individuals, young children, middle age workers, and elderly post-retirees who are stepping off on the journey this very day, or are much farther down the road than you will want to imagine right now.

THIS is going to be a journey.

This is the beginning of your journey, not the ending of it.  Strokes and Brain injuries are very, very dangerous, and neither your doctor, nor your medical care team will want to speculate on hope during the first few days. 

But I deal in hope.  I have heard countless stories of survivors, and I am one of them.

There is More, a whole “new”  you to be uncovered

Like Dr. Steven Strange who thought he lost everything when he lost his ability to be a brilliant neurosurgeon, he found his new meaning as a Marvel Superhero

Be ready to accept that which was the “old you” and that which is the “new you”

You could come out of this completely unscathed.  Many do. Many others discover that there will be changes:

Abilities and activities that they can no longer do, will be replaced  by new passions, new activities, based on new abilities.

For some, this interruption of your life, will end up being no more than a “stay in the hospital” and you will go home with little to no residuals, but for many others it will mark the 1st day of who you will be, and all that you WILL do, what every survivor calls “the OLD me and the NEW me”.

Your Support Team

From Day 1, Your Support Team will Consist of 3 Elements, which we will explore in detail in this book:

knowledge. 

• Your First team member in your recovery process is knowledge. What happened to you, what will happen to you.

Medical Staff 

• After you leave hospital care you will want to know where and who you will turn to for medical treatment and advice

Community 

• Last, but certainly not least in importance, will be finding local and on-line support groups, discussing your experiences with others who have been on the survivor’s journey for months or years.

Why are these so important?

If you are still in the hospital, or in full time physical therapy, there will come time,

much sooner than you or your family feel is appropriate

                        that you will be released back home to finish your recovery.

When this happens, you will feel UNPREPARED and INSUFFICIENTLY INFORMED to navigate “what I am supposed to do next?”

I also need to state unapologetically, that I am not a trained medical professional.  I am a survivor, and a leader of two support groups.  I am also a very good listener.  I also spend hours reading and ‘listening’ to stories of survivors on Facebook websites.  I am also, whenever I can be, an advocate for survivors.

All the evidence that I have is 100% anecdotal.  This means that it comes from real people, current people, talking about how they feel in support groups and online groups.  I wish that the medical profession would utilize more anecdotal evidence in their treatment and understanding of the survivor.

Your Physicians and Specialists were there to protect your life and return you back to a state of physical stasis.  They were not, and are not there to advise you on how to be a person again.  After all, a brain injury or stroke is one of the, if not, the MOST, life shattering injuries that can happen to a person.

So, let’s look at what happens next!

Knowledge

Modern neurologists do not often use the word stroke or brain injury in a hospital clinical setting.  Most often the immediate diagnosis is “CVA” for “Cerebral Vascular Accident” or “Blood Vessel Accident in the area of the brain”.

Medical society divides this into several types.  For ease of understanding, I have simplified the chart to the following.

< >ABI:Acquired Brain Injury.ABI:STROKE – due to poor healthABI:BIRTH – Birth defect issuesABI:ABI – caused by heart attack, medical procedure, etc.TBI: Traumatic Brain InjuryTBI: Force ImpactTBI: Dissected Artery – Whiplash, over twisting of vertebral arteryHemorrhagic bleeding

Although stroke is prevalent in those with high risk heart disease, my anecdotal experience is that most patients are admitted due to some form of TBI, of which VAD or Vertebral Arterial Dissection (especially among young people 15-35) is growing at an alarming rate.