Monday, April 18, 2011

Successfully Surviving Brain Injury


One thing I'm always on the search for is a good book. You know, something that informs, or uplifts, or just touches me in some way. Something that I can relate to our family's struggles with CCM's. And well, if it combines all those elements then I've hit the jackpot, and one of the first things I want to do is share it with you.

It's time to share.

I'm so happy to introduce you to Garry Prowe, author of Successfully Surviving a Brain Injury. He was also kind enough to talk to us a little bit, and for that we thank him.

Garry and Jessica Prowe

Scroll down to read our interview with Garry.  He was also kind enough to provide us with One Piece of Advice. It's a good one, and I whole-heartedly agree with him.

You can also check out his phenomenal website here.  His book is also available on Smashwords, Amazon, and Barnes and Noble.

And don't forget to bookmark his blog, Reading Brain Injury, where he reviews the best brain injury books out there.

For the list of books we've compiled here at Angiomas Suck, you can go here.  I'm also planning to add a free-standing page of all the book recommendations we've received , including Gary's.  Stay tuned.  Now, yes, I will stop chattering and let you go read the interview. (Do you think he was pulling our leg about the iPod? Hmmm.)

Enjoy!
****
Cover for 'Successfully Surviving a Brain Injury: A Family Guidebook, From the Emergency Room to Selecting a Rehabilitation Facility'


Title: Successfully Surviving a Brain Injury: A Family Guidebook, From the Emergency Room to Selecting a Rehabilitation Facility
Author: Garry Prowe
ISBN: 978-0-9841974-3-9
Page count: 246
Genre: Nonfiction, medical/health
Price: $17.95

Can you tell us a little about yourself: My wife Jessica acquired a severe brain injury in a car crash in 1997; I am her principal caregiver. I've been writing about brain injury for about ten years. In addition to my book, I've had articles published in many brain injury publications and web sites and I've presented some of my research conclusions at regional and national conferences. I have a Masters degree in Public Policy from the University of Michigan. I worked as a policy/management analyst for the U.S. government for about twenty years.

Tell us about your book: At the time of Jessica's accident, I discovered that there was no single source of material addressing the countless medical, financial, insurance, legal, family, and personal issues families face in the first few weeks and months following an injury. I decided to write a book that would answer many of the questions they have as they sit in ICU waiting rooms, plan for rehabilitation, puzzle through insurance and government benefits paperwork, and try to keep their emotions under control.

How long did it take to write the book? Are more planned?

I spent about five years researching and writing the book. The original plan was to write a series of four books, with the next three covering rehabilitation, going home and reentering the community, and living a full life with a brain injury. However, I've been reconsidering this plan for two reasons. First, in the past few years, there's been a surge in the number of books published about brain injury. Many of the issues I planned to cover in these books have been addressed well by other writers. Second, I have some chronic health problems that have been slowing me down.

What inspired you to write the book?

The desire to give others the comprehensive and easy-to-read information I needed after Jessica's injury.

You have an amazing blog as well, where you review books that in some way relate to brain injury. Can you share what you hoped to accomplish and why?

Unlike thirteen years ago, today there are too many books about brain injury available in bookstores and on-line. They vary greatly in the quality of the writing and the value and comprehensiveness of the stories they tell and the information they offer. Readers can be overwhelmed by the choices. In my blog, I try to narrow these choices to a select number of books that readers can trust will be well worth their money and time.

What do you hope your readers come away with after reading your book?

Valuable information, helpful advice, and an assurance that survivors of a brain injury can live full, happy, and productive lives

Where can we go to buy your book?

www.BrainInjurySuccess.org or any book seller.



Short excerpt from book:

You are reading this book because someone you love has suffered a brain injury. The form, extent, and consequences of the damage are yet unknown. Her doctors are unable to make a prognosis. "Every brain injury is unique and unpredictable," they say. "It will be months before we know for sure." A hospital social worker has advised you to hope for the best, but prepare for the worst.

This news is incomprehensible. What does the social worker mean by "the worst”? What must you do to “be prepared”? When will your spouse emerge from her coma? How badly will she be impaired by her brain injury? How soon will her doctors speak with some certainty? How will this misfortune impact your family and your future?
In 1997, I was in your place. My wife, Jessica, suffered a serious brain injury in an automobile accident. Like you, I was relieved to hear that she would survive her near-death experience. Like you, I was devastated to learn that she would acquire any number of lifelong impairments. And, like you, I had many questions and few answers. "Only time will tell," her doctors repeated over and over. Confusion, panic, grief, and fatigue were my constant companions every hour of every day for weeks.

On a less serious note:

If you were stuck on a desert, which would you pick-a book or an iPod?

What's an ipod?

Name your favorite donut.

Haven't had one in years, but I'm a sucker for anything that combines chocolate and raspberry.

Are you a little bit country or a little bit rock and roll?

Rock and roll, but I really enjoy Alison Krause.

Thanks again, Garry. (Readers, make sure to head over to the poll and give us your own desert island pick!)  And remember, if you buy and like Garry's book (and any book you've found helpful, really) leave a review on the site you purchased it from and  help spread the word.  


Thursday, April 14, 2011

One Piece of Advice...

For living with brain injury...


All caregivers require and deserve an occasional break to care for their own physical and emotional health.--Garry Prowe, author of Successfully Surviving Brain Injury. Find your copy here.


Cover for 'Successfully Surviving a Brain Injury: A Family Guidebook, From the Emergency Room to Selecting a Rehabilitation Facility'

Tuesday, April 12, 2011

CONGRATULATIONS!!!



Every gotten to witness something so wonderful happen to someone who really deserved it?

Congrats, Calabresella. On all your good news.

I've always tried to believe life could still be good. Even though all that other stuff sucked, and oh it does, we could still have hope and happiness and just live while fighting back and spreading awareness, dammnit. Thanks for reaffirming that.

:)

Saturday, April 9, 2011

Special Event

The First Young Persons' Caverhub-Cavernoma Alliance UK

Today, Saturday, April 9th  from 10 am to 12 pm (and as this is my birthday and there's lunch at the Rainforest Cafe chased by a trip to the London Aquarium you just know it's going to be a rockin' good time.)



For more info go to Cavernoma Alliance UK here. Or here.

Find'em here on Facebook too. 

Wednesday, April 6, 2011

Thank You



So. I don't talk about it much but I have this day job. I write. (I wish I could say it was lucrative or glamorous or well, lucrative. But eh, what can you do.) Anyway, when I do get paid I always donate my royalties to charity because, well, because.

I really appreciate everything organizations like Children's Hospital of Boston have done for us. So, you know, it's good to give back when you can. And I swore that if this blog made any $$$ it would go to a charity directly involved in making Angiomas a tad less suckworthy.

Anyway, this blog is offered on subscription on Amazon and while it's not a lot it's still something which is actually quite something-- thanks to you all out there we got us our first royalty check to donate to Angioma Alliance. SQUUUEEEEE!!!!!



Let us celebrate!!! Donuts and boxed wine for everyone!!! We did it!!!



(The war isn't over, though. But hey, you can still subscribe if you haven't. If you don't have a Kindle, you can download the app. You can also just donate to my Firstgiving page over there (yeah, right over there on the sidebar, I swear, or you can just click this link) if the mood hits ya, or go to Angioma Alliance and see how you can help there. Money's great; it's always appreciated. But they need volunteers and other resources as well. Anyway, my point is it feels good to get to help those who help us. :) It really does.)

Saturday, April 2, 2011

Fundraiser Event!

Don't forget!!! 

 There's a fundraiser event today, Saturday, April 2nd.

Where: Blanchee Boutique
           89 Main St
           East Rockaway, NY 11518

Spend the afternoon shopping at this dress and bridal shop, all while raising money for Angioma Alliance.

A big thank you to Blanchee Boutique, too. Way to rock.

Monday, March 28, 2011

Special Event

Check it out:

The Fifth Annual Cavernoma Alliance UK Forum


Saturday, June 4th from 9 am to 5 pm

For more info go to Cavernoma Alliance UK here. Or here.

Find'em here on Facebook too.

Friday, March 25, 2011

Fundraiser Event!

YES!

When: Saturday, April 2nd

Where: Blanchee Boutique
           89 Main St
           East Rockaway, NY 11518

Spend the afternoon shopping at this dress and bridal shop, all while raising money for Angioma Alliance.

Go, go, go!!!

Thursday, March 24, 2011

Special Event

The First Young Persons' Caverhub-Cavernoma Alliance UK

When: Saturday, April 9th  from 10 am to 12 pm (and as this is my birthday and there's lunch at the Rainforest Cafe chased by a trip to the London Aquarium you just know it's going to be a rockin' good time.)



For more info go to Cavernoma Alliance UK here. Or here.

Find'em here on Facebook too. 

Tuesday, March 22, 2011

Trust Me...



Doctors mess up.

They're not gods. They're not infallible. They're not perfect.

They're just people.

Yes, they do a great, almost miraculous, job most of the time. And we are incredibly grateful for them and appreciate those who go above and beyond. But it's that rare occasion where they screw up that you have to be on guard for...you can't just blindly trust in anything or anyone. Because it does happen.

I don't like saying this. Doctors have saved my children's lives. They pieced me back together after I broke my back. I've put all my faith in several, and will continue to, but we've been let down as well. Badly. By "top" physicians. By the "best in their field" doctors.

So it makes me cringe when someone tells me a doctor has told them something and they've just accepted it. A doctor they don't know everything they possible can about...on a diagnosis or treatment or opinion that they don't follow up on or research...that they don't get a second, third, or even fiftieth opinion on when their gut is telling them otherwise. And this happens a lot--people just accepting what one doctor tells them.

They hand over all their control, all their power, and just react and accept.

And I want to scream, Noooooo!!!!

I know I sound righteous here. I know I sound like I'm perched on a soapbox and I'm ranting (because, um, I am), and really, I'll fully admit I'm trying to cut back on both processed sugar and caffeine products as it's getting a bit out of control--my obsessions--so perhaps this wasn't the best time to post on this subject.

But it happened to us. More than once. The most devastating was when BBB was misdiagnosed, and damage was done. Irreparable damage.   Had I questioned...oh, hell, had I even asked for the reports...it wouldn't have happened. I was young and stupid and scared, and I didn't, and I learned the hard way at the expense of my children's health.

I'll never make that mistake again, though. Every medical test, every written note--everything I see and question. And our doctors are beyond cool with it, because they rock, and they understand and respect us.

So what I want to say is be strong and brave. Your medical records are yours. Ask for them. Read them. If you don't understand them, have the doctors explain them. That's their job and they WANT to help you.

You have the right to question your doctors, to research them and anything they say. You have the right to get as many opinions as you can. And if you don't like a doctor, or they don't respect you or treat you well, fire them. You can do that. I'll even go so far to say you should do that.

It doesn't make you a bad patient or ungrateful. All it means is you're taking control, being proactive, and honoring yourself and your doctor. It's one of the most wonderful and empowering things you can do. And forgive my rant, please, because I just don't want anyone else to have to learn this the hard way like I did.

The Web-Savvy Patient

Fine. If I'm gonna rant I should at least offer something useful, eh?

The  Web-Savvy Patient: An Insider's Guide to  Navigating the Internet  When Facing Medical Crisis
Check out The Web Savvy Patient by Andrew Schorr.  It's a great read. Only bummer? It's not currently avail on Kindle. *sigh*

*Thx to PattiG for recommending it!

Friday, March 18, 2011

The Long Road Back

Great article on Boston.com about Red Sox prospect Ryan Westmoreland's recovery from brain surgery here.







* Thanks to Allison for sharing the link on Facebook.

Tuesday, March 15, 2011

Yawn...


So, that's it.

As of yesterday, we are now moved in. The last box has been dragged over. The floors were mopped. The keys turned over.

Our internet is working too. Let me digress to say this is huge as it wasn't. And it was supposed to be and it drove me to distraction because it's sort of hard to blog  and email and have a life any more WITHOUT WORKING INTERNET, DAMN YOU, COMCAST.

Ahem.

But anyway, we're here. We're in, we have the interwebs, we all survived, and I celebrated this morning with a donut and a huge cup of coffee in my new home. That of course is still missing some flooring and only has partially installed appliances and the downstairs toilet runs hot water only which is rather disconcerting. But it's fine. It's ours now.

Of course the respite is brief. BBB seems to be having problems again. The headaches, the seizures, the hearing loss, the vision blurring, all back again. MRI is scheduled for Sat. EEG for the Friday after. We wait, breath held, hoping the bleeding stops and recedes, taking the issues they cause with it as it always has before. We refuse to think it won't.

Because it will.

It will.

Meanwhile, I hope you all celebrated Rare Disease Day

and voted (for PattiG, not that we're trying to sway your vote or anything, but really you should have voted for her) in the 2011 Neuro Film Fest.


Yes???

Wednesday, March 9, 2011

I have some explaining to do...


I didn't disappear. I swear.

It's worse. Much worse.

We finally closed on our dream house.  Only...

Our dream house? It's a foreclosure nightmare that was in a totally unlivable condition. So we have spent every second since renovating and spending and crying. And then crying a lot more.

I think I've sprained my tush too. Long story. But OW. Those laminates floors should be made illegal.

But it's almost over. Or, well, the moving-in part is almost over. The renovating won't ever end, I suspect. But I will be back in a few days. I swear. I promise. Oh, man, I hope. Besides.  There's so much to tell you!