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-   -   Don't Leave Me This Way book (https://www.neurotalk.org/stroke/576-dont-leave-book.html)

pinhead 09-08-2006 11:17 AM

Don't Leave Me This Way book
 
I just discovered this wonderful forum! I am the author of Don't Leave Me This or when I get back on my feet you'll be sorry (HarperCollins June 06), my personal memoir of my struggle to regain control over my life and body following a devastating hemorrhagic stroke. I believe my experience is a blueprint for how not to let the system dictate the direction, pace, and objectives of one's recovery. My new mission post-stroke, is to help patients help themselves and improve the doctor/patient relationship. There's an Appendix for patient advocacy tools that any patient (or doctor) will find useful--afterall, it is a partnership.

LindaM 09-08-2006 05:21 PM

Julia, Hi, I don't ususally come to this forum, I'm most likeley on the chronic pain or spinal disorder forum.
However my DH is having problems and the drs are afraid he may have a stroke so I happened to ck out the site, I'm happy I did as I ck'ed out your book and from what I read it appears to be a good book and informative, I'll have to ck on getting it.
Most of what your talking about in your book about being your own advocate and about dr/patient relationships is true in medical situation.I think it is great that you have written the book and that you looking for ways to help others that have or are going through such situation.
I hope you continue to ck in and post with us as I'm sure that there is so many of us here that could benifit from all you have to offer.
I was happy to read in your book review what a great recovery you have made even though the drs didn't believ you could, YOU GO GIRL!!!!
Thanks again for posting,
LindaM

pinhead 09-08-2006 05:45 PM

Linda, I'm glad I found this site too. Every person has to deal with adversity at one time or another--But the basic tenant to survive whatever our hardship is very common and basic--positive attitude and humor will help
for a better outcome. I'm a firm believer that laughter is the best medicine one can be administered--I hope that my book provides a dose to readers.
Don't forget to listen to your inner voice, which I believe is your soul
whispering to you and it's a direct link to God's voice.
It'll be the truest voice you'll ever hear. Stay strong! -julia

LindaM 09-08-2006 09:34 PM

Julia,
Thank you for your sweet reply, it's much appreciated.
I agree with everything you have said in your post and know with my heart your so right, as many others out there I'm sure would agree that at times and after many yrs sometimes the faith and inner voice kind of get lost or buried under all the pressure of the day to day pain and stress.
That is one of many reasons why it is so nice to see a story like yours and know that there can be successful outcomes.
I hope you continue to come around and get to know some of the others here on BT2 board, I'm sure that it would be as benificial to you as it would for many here.
Bless you and thanks,
Linda

jlennon 09-18-2006 01:40 PM

julie,
thank you for writing your book journaling your stroke recovery journey.
as a nine year survivor i read and benefit from meeting all other survivors whether in printed books,or here on these boards and online mailing lists as well as face to face in survivor support groups. sharing our experiences makes all of us stronger. jan lennon

Rowland Gale 09-18-2006 06:14 PM

Julia,
We apparently were in the hospital at almost the same time, but I'm slightly older than you - say another 40 years +/-. I checked out your very excellent web site. You can check out my feeble attempt at www.hemiplegiarecovery.com
You've certainly got the determination to recover - perhaps totally.
All the best,
Rowland

pinhead 09-19-2006 12:45 PM

Jan, it never ceases to amaze me the power of the human spirit to
overcome whatever we are faced with. I agree with you that it is
so important to share our stories with each other as well as with
folks that haven't encountered what we have--I think it is a good
reminder that something can happen in a split second that could
change your life forever. Mine has been forever altered, but I wouldn't
trade all the wonderful experiences and people that have come into my
life--that wouldn't have occurred or appeared without my stroke.
Hard to believe, but I feel it has been a gift. Of course, I hate the
devastation it has done to my body in it's wake--but the untangible
things have been a blessing. Keep up the good fight and continue to
smile. A kindred spirit, julia

pinhead 09-19-2006 12:54 PM

Quote:

Originally Posted by Rowland Gale (Post 8136)
Julia,
We apparently were in the hospital at almost the same time, but I'm slightly older than you - say another 40 years +/-. I checked out your very excellent web site. You can check out my feeble attempt at www.hemiplegiarecovery.com
You've certainly got the determination to recover - perhaps totally.
All the best,
Rowland

Wow Rowland! It must have be a karma thing, because everything you say
on your website is something that I have said at one time or another.
Yesterday I spoke to a large group of patients and staff at a rehab
hospital. I was so honored to talk to them--to show them that you can get
through it and also be happy (which is truly a choice). I had wished that
when I had my hemorrhagic stroke that someone like me now could have walked over my hospital room threshold to show me where I could get.
I do my best to be that person for others that are in the condition that
I was so long ago--but so fresh in my mind.

I was featured in People mag and Good Morning America and since
those events, I get tons of email from survivors. I would love to
refer them to this forum as well as your website for further support.
God Bless you for everything that you are...:)
with love, julia

Mango Shade 09-24-2006 08:40 PM

Hi Julia,

First and foremost, I loved the website. But more importantly, I'm truly humbled by your attitude to life post stroke. Unlike me, you've actually gone and DONE what you set a goal for... as in finished your book and had it published.

Where I've been "comfortable" to just float along, you've grabbed life with both hands (metaphorically speaking, that is. :rolleyes: )

My hat goes off to you Julia. You done good.


Cheers

Mango Shade

pinhead 09-30-2006 11:51 AM

Hey Mango Shade!
Thanks for the kudos, but I believe goal setting is up to the
individual. No one can set another's goals because ultimately it's
up to us to achieve what we set ahead. So don't beat yourself up--
float along if it makes you happy!:)
keep smiling...


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