Well ... It's Been a While, And For That I Do Apologize!

But I Was Healthy!

So, I was 52 years young and an expert skier, but it didn't keep me from being blindsided by a 200-pound snowboarder ... at least that's what must have hit me. And the person did not even stop! Not to make light of a sensitive subject, but you can catch the rest of my story—and that of twenty other survivors, spouses & caregivers—in my book, Different Strokes!

What I Learned: Do you have a couple of hours?

Most stroke survivors work everyday to get better--and it's an uphill battle, as we all know. We may make incredible strides one day and then falter the next, and then pick ourselves up to do it all again. But here's the twist and the beauty: whether we realize it or not, the extraordinary effort we put forth to recover will pay off "in spades" for many years to come. Let me explain ...

If you can recover or even improve, be it from paralysis, cognitive damage, the inability to walk or tie your shoe, then you will have accomplished something monumental! And you should be incredibly proud, so pat yourself on the back and take a bow. You have reinvented yourself, again!

Now, take this incredible effort and apply it to every challenge you face, be it personal or professional: break down every step and apply the same steely focus and expectation to every undertaking, no matter the size or importance! If you can come back from stroke, then you can do almost anything! And don't be surprised if you surpass your pre-stroke accomplishments in some ways. I did.


Moving Forward: Philosophically

It can take years to recover ... and maybe even a lifetime. We will have to put forth extraordinary effort to do the simplest, most basic things. And, as most of us have to realize, we will have to compromise and adjust our expectations more than once. And, what once seemed so important and meaningful before has little or no relevance now. Life is elastic, just like our re-forming brain.

Eight years later, after relearning the fundamentals of, well, everything ... I ski and play tennis better than I ever did before; I can drive and ride my bike (not in the street); I am more patient and empathetic with people; I never stress the small stuff; and I am not as hard on myself or others as I used to be.

Keeping Positive

I believe that if we are strong and willful before our stroke, we will be strong and willful in recovery. It's all about the attitude. If we can maintain a sense of humor--even after a year of trying to tie our shoes--then we have a much better chance of long-term recovery. We must put it all out there, even if, at the time, we can't fully understand why.

A Quick Anecdote that Speaks a Thousand Words

I walk into the hospital gift shop to hand deliver my new book, Different Strokes, which I explain to the elderly volunteer. We chat about the book and she checks me out from behind the counter.

"I have a friend that had a stroke," she says, "and he's just starting to walk again, so he's doing pretty well!" I assume that most senior citizens have experienced stroke on some level and know something. I look at her, believing she must see the error in her words ... but she does not. I don't fault her at all, as she's never had a stroke. I lean over the counter and earnestly share my practiced response to such an inaccurate and naive statement. I want her to understand how debilitating and depressing stroke can be--and how looks can deceive.

"You know," I say, "a stroke survivor can stand before you on their own two feet, speak, and appear 'normal,' and still be incapable of holding a job, remembering a phone number or finding their home from five blocks away!" She paused and then smiled apologetically. "Thank you for sharing, I had no idea. You look so healthy and alive ..."

Believe it ... or Not

I would not give back my stroke, even if I could; even with my continued deficits and fading memory. Why? Because of the things I've learned, the people I've met and the way I now look at the world!

Steve Boorstein * Different Strokes * http://www.survivingstroke.com

I just learned that Stroke is now considered to be the fourth cause of death in the U.S., downgraded from third, because of the use of tPA. (Tissue plasminogen activator). If you can get to the hospital inside of 1-3 hours, you may be a good applicant for tPA.

I also learned that a stroke patient loses roughly 32,000 brain cells per second, or 1.9 million every minute that you remain untreated. So, getting to the hospital at the first sign of stroke symptoms can make a HUGE difference to your future well being.

• Time is the key
• Call 911 immediately
• Say it's a stroke
• Get to the hospital ASAP
• Tell the EMT, and everyone you see that you are having a stroke!

The fact that tPA works in so many cases is great news! It's just sad that many hospitals charge upwards of $50,000 for this treatment.

December 2012

As you read, you will see that I suffered a dissected carotid artery from a "hit" I sustained on the slopes of Vail. My passion and niche are artery dissections from slams, jerks and falls while wrestling skiing, running, biking, playing hockey or football ... or from heavy sex! This does sound like fun, but what a way to go :)

Help me identify everyone that's had a dissection, and let's bring this much-needed news story to the masses!!

December 2012

I am so excited to advocate for stroke awareness—and it's most of what I do these days. Although I just did an interview with People Magazine the other day for the March issue about quick fixes for clothing care problems!

I met with the communications director of the American Heart and Stroke Assoc. in Denver last week and laid out some fun projects. I will be doing some speaking, writing and education for them.

By the way, if any of you know a stroke survivor—or people in the medical field—please forward this email and contact information. Feel free to contact me yourself, too. I have formed a National Stroke Support Book Club (NSSBC) and have amassed quite a database of support groups and books about stroke awareness. Visit my new home at www.survivingstroke.com to read about my projects and advocacy! Check out the free excerpts from my new book, Different Strokes!!

I have been calling stroke support groups and stroke coordinators for months and I have had some incredibly illuminating conversations. My latest passion—in addition to all my other pursuits for stroke—is the fast-rising occurrence of sports-related dissections and subsequent strokes. Of the the twenty survivors and spouses I interviewed for my book, five had dissections associated with physical activities. I've since done hundreds of interviews with active stroke survivors and dissections are very common amongst active people!

I am also on the case of the millions of "unaware" people that don't understand aphasia. These people don't recognize aphasic people, so it's up to us to teach and educate. People think we're drunk or retarded: they become frustrated with our speech and, too often, finish our sentences, which is demeaning and frustrating for aphasic people.

My advice ... be patient when encountering such conditions, ask about the person's challenges—as most people are open about this—and take a breath while we get our words out. I know it's not easy, but it is respectful.

OCTOBER 27, 2011

First of all, let me explain why my blog goes from May to October in one swift kick ...

I was slammed with the editing of my new memoir, Different Strokes. This timely book follows my stroke, from TIA'S to full-blown stroke. It also tells the story of twenty other survivors, spouses and caregivers, hence the title! I wish I had this book after my stroke (as does my wife!!).

Okay, if you want to know what my wife Barbara and I decided, once the doctor stated that he'd have to admit me, you will have to read the book! This is not a copout, it's just that my life has changed and I have to start writing about these changes. You can buy Different Strokes at www.survivingstroke.com, as well as at Amazon, Barnes and Noble, and booksellers everywhere.

I had this brain cramp that I couldn't shake —like ice cream on the brain. But once it subsided, I realized that I had to start a National Stroke Support Book Club (NSSBC): Affordable, easy-to-read titles, with larger lettering and inspiring stories ... Not too scientific, but emotional, real accounts, with uplifting stories of strength and accomplishment.

I am painstakingly calling every stroke coordinator and support group facilitator, coast-to-coast to share my vision for the fledgling NSSBC. In addition, I am asking group leaders to share their TOP 3 topics for meetings, so every group can benefit.

The Roller Coaster Ride ...

My wife and I talked about the choices. If I chose the "wait and see" method of the ICU and Coumadin, and I did suffer a major stroke, how would it be for Barbara to nurse me? Would we sustain the experience and come out loving each other, or would I be so incapacitated that the "old" me would only be a memory? On the other hand, the radiologist said that the stent procedure is mostly safe: I could have the stent and be on my way, back to normality in a few days!

We chose the stent procedure. I would just have to hang in the E.R., hooked up to an I.V. of Heparin while she located the proper stent and reserved an operating room. No sweat! However, between the cold blue steel bed in the E.R., the I.V., and the incessant activity in the E.R., I didn't sleep much during the night. I woke t 6am the next morning hoping to be taken into the operating room. Hours later they came and prepped me. Barbara was called and told to wait an hour or so for me to be wheeled into the recovery room.

I was on a twilight drug so I could remain conscious and able to confirm feeling in my limbs. They inserted the catheter into my femoral artery and I felt it creep its way up to my carotid. I could see the Doc and nurses surrounding me. The Doc asked if I could feel my fingers and toes ... "Could I wriggle them?" Yes, I could. "Could you push on my hand with your feet?" Yes, I could.

I felt a very strange sensation, like water rippling through my left arm and it started flopping a bit. I reported this sensation. Moments later, there was all kinds of activity, the Doc barking orders to the staff. I'm lying there freaking out, unable to grasp the just what was happening to my body. That was the last thing I remember.

Best,
Steve - The Stroke Survivor

A life-changing experience ...

Yes, I had to stay. "Could I run home to get my clothing and to put my life in order first?" "No," was all they said. Back I went to my room in the E.R. and waited for the next visit from the doctors.

"The MRI showed that you have a number of blood clots in the left hemisphere of your brain. You also have a dissection (or tear) in your right carotid artery. In addition, you have a 60% narrowing in that artery. The flap of the tear 'caught' the blood and formed a clot, which is affecting the blood flow and oxygen to your brain, hence the TIA's." For the record, TIA'S stand for transient ischemic attacks. A TIA is like a mini-stroke that produces similar symptoms as a full-blown stroke, but they usually last only a few minutes and do not cause permanent damage. These mini-strokes should be considered a warning that a bigger stroke is coming; maybe in a week, maybe in a year.

I looked at Barbara as if to say, "What do you think of that?" The Neurologist brought in an intervention radiologist to offer her viewpoint, as she would be the one to put a stent in my carotid, if I chose to go that route. The neurologist continued, "We can send you to the ICU and give you Coumadin and then wait and see if the clot dissolves on its own over the next two weeks." "What are the side effects of this drug, and how long would I have to remain on it?" "You would be taking Coumadin for six months to a year."

He read me the side effects, including the fact that people have a hard time clotting, should a cut or injury occur. I would have to stop most of my active sports during this period. I was not into that, at all. "What other choices do I have?" The radiologist piped in, "You could have a stent inserted into the carotid artery through the femoral artery. It's a reasonably simple procedure and not too invasive. The stent would open the artery and restore you to full blood flow."

The doctors left the room for Barbara and me to talk about this option. We both agreed that this would be the preferable direction. We called the docs back in and listened to the details; the stent would be inserted with an "umbrella" on the top to catch particles of the clot that might become dislodged during the procedure and shoot north to the brain. If even a small piece of the clot should get past the umbrella, you could end up with a stroke or brain damage. This is not a common occurrence, so try not to focus on that too much. She added that the normal procedure in cases like this is to do the ICU and Coumadin, as a "wait and see" process. However, it is possible – given the number of TIA's that you've already had that you might have a major stroke while in the ICU. They would try and mitigate the condition should this occur. I asked her which procedure she favored. She seemed pretty sure of herself that the stent was a better way to go.

We asked the docs to leave us alone for a bit to discuss this.

Best,
Steve - The Stroke Survivor