Starting October 25 of 2011, "InfertilityMom," 39-year-old Jennifer Saake (founder of Hannah's Prayer Ministries), experienced 6 strokes, all due to vertebral dissection at a chiropractic office. The largest two strokes were brain stem and cerebellum bleeds. Jenni remained hospitalized until nearly Christmas and was not expected to live (near death experience) nor recover, but if she even survived, she was slated to live out her days in a nursing home or, best case, to maybe come home but wheelchair-bound and needing 24-hour care (please read more and watch short video). Jenni is now walking (with a cane or wheeled walker), has recovered much eye-sight, some hearing, partial use of her hands, cares for most of her own personal/toiletry needs, and is currently writing three books, maintains multiple blogs, and stays active on both Facebook and Pinterest. Near the five-year recovery mark, Jenni has renewed her pre-stroke excitement about the unique Lilla Rose hair Flexi eight jewelry she sells and has finally regained enough hand/arm function to regularly use! (The biggest ongoing losses at the 4 1/2-year point of recovery are left-side nerve pain, inability to drive, loss of homeschool teaching capability, significant sound processing issues (often triggering nausea), and some profound physical ability limitations such as a limp, balance challenges, clumsy use of right hand and only large motor function in left hand.) Here is her resume.

Since Jenni's chiropractor carried no insurance and moved out of the country soon after the accident (thus avoiding any legal or financial consequences), if you would like to help contribute to the Saake (pronounced like the two small words, say and key) family's massive financial needs (medical expenses alone are estimated to cost between $1- and $1.5- Million in Jenni's lifetime), please visit Jennifer Saake's Stroke Survivor GoFundMe Page. (This support information has been added in direct response to several reader requests.) The Saakes sincerely thank you for your prayers and if God prompts and equipts you to send any monetary assistance as well, this is a significant added blessing.

Jenni is clinging to God's grace through the entire experience. Here is her unfolding story, documented in her own words (typing with only her right hand), as she perceives it happening in real time, messy, honest and to the glory of God...

Stroke Resources

As a personal resource, I am listing some other stoke therapy ideas/tools/information/resources as I had such a hard time finding them early-on and can maybe save someone else the time, effort and frustration of searching too. I expect this to be a continually growing list as I add in future links.

I can't stress the truth of this statement enough! So very true. Even two fairly identical, medically speaking, injuries exhibit it vastly different ways, due to each person's unique brain wiring!
Please let me know if you have other suggestions. I would also like to add a section of advice and words of wisdom from stoke survivors to others newly entering recovery. What do you wish someone had told you going into this? My email is StrokieGal AT gmail DOT com in case you would like to suggest anything.

One thing I think all families and friends, new to dealing with brain injury should read, is this Letter From Your Brain! My own thoughts (written at not quite 2 1/2 years after my initial strokes) are simply, "It will not be THIS hard forever! It may never be the same as before, but it really does get better than today, good again even!"

If you are interested in having me review your product for consideration on my blog, you will want to visit my Review Policy.

Here you will find:
Informative /  Blogs and Personal Stories (especially Christian-based and/or young stoke survivors) / Conditions I Wish I Had Known To Talk With My Doctors About Sooner / Books, Movies, Media /  Support Resources and Organizations / Therapy and Adaptive / Independence Tools / Resources for Family and Caregivers  / Other Helpful Links (not stroke specific) / Inspiring Stories
In case of an emergency (emotional, mental, or obviously physical), in the United States please call 911, or in emotional crisis, the National Suicide Hotline at 1-800-273-TALK or the suicide hotline phone number at 1-800-SUICIDE or find support numbers in other countries by using the simple search box at BeFrienders.org.


Informative 

What Is a Stroke?

Stroke Statistics

Stroke Warning Signs

Unique Aspects of Young Person Strokes

Chiropractic Stroke

I'm being really brave here. I've been painfully camera shy, but I so wanted to see other's stroke pictures, so here are mine. (Added Nov., 2012 - I still hate the camera!)



Conditions I Wish I Had Known To Talk With My Doctors (Because They Never Brought Up) About Sooner!

Pseudobulbar Affect (PBA)


Central Pain Syndrome (CPS)
  (previously or also known my many different names including Thalamic Pain Syndrome, Dejerine-Roussy Syndrome, Posterior Thalamic Syndrome, Retrolenticular Syndrome, Thalamic Hyperesthetic Anesthesia, Central Post-Stroke Syndrome) - I've linked three different resources (and names) up in the blog description, because this information was so very, very hard for me to find.

Ocular Migraines (OM)


On a slightly related note (causative, rather than effect), in July, 2013, the National Stroke Association reported, "A new study reports that women who experience migraine headaches with the visual disturbance known as aura may have the same stroke risk as someone with high blood pressure or diabetes."
In case of an emergency (emotional, mental, or obviously physical), in the United States please call 911, or in emotional crisis, the National Suicide Hotline at 1-800-273-TALK or the suicide hotline phone number at 1-800-SUICIDE or find support numbers in other countries by using the simple search box at BeFrienders.org.


Blogs and Personal Stories
He [God] comes alongside us when we go through hard times, and before you know it, He brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us. ~ 2 Corinthians 1:3-4 (The Message)
How Jenni's strokes offered a window to Heaven. I have made several stroke friends through this blog and I ask you to please don't let anything I post discourage you if you are not there. I know I am blessed not to face some of your challenges (I can't imagine being non-verbal, especially for months or years, for example!), but even if we aren't on exactly the same course or speed of recovery (remember, timing is unique for each person - much of what I do today, I couldn't have dreamed possible six months ago!), there are likely some things in my recovery journey you may find yourself thankful to not be facing as well! I never want to hurt you by sharing my miracles. Please don't hesitate to share your progress (or frustrations at your areas of challenge) in my comments either! My chiropractic stroke story.

Hope Heals - Katherine Wolf, brain stem stoke, April 21, 2008, age 26

Kate Adamson - double brainstem stroke, 1995, age 33 (includes information on her amazing book that I had read even before my own strokes, and hungrily re-read after)

Kendra's husband, Scott - Kendra's earliest days of recovery, starting April 15, 2012
Kendra in her own words - my dear friend, blessing and "stroke buddy," multiple brain stem and additional strokes, age 35

Maggie Youel - left hemisphere strokes, April 16, 2012, age 20
Here's a video of Maggie doing hand therapy.

The Simple Wife - Toben and Joanne Heim (mostly Toben) blog about family life after her January 11, 2011 stroke (I think age 39?).

My friend, Becky Gray. Her blog after a Jan 29, 2003, severe car accident causing traumatic brain injury and stroke during surgery (I think in her 20s?).

Hope Out Loud - car crash lead to near fatality and traumatic teen brain injury, but God is still praised.

car crash caused stroke, age 20, and electronic walking video

My Stroke of Luck  blog. "On March 14, 2011 I had a hemorrhagic stroke, just 2 weeks before my 49th birthday."- Jan Gomez Burkhar

The Stroke, blog post about how one 46-year-old woman slowly recognized the signs of her stroke even when the first hospital did not. Great explanation of stroke warning signs.

Dean's Stroke Musings
 
5 Years After Stroke, one man's story

18-year-old has a stroke from birth control pills, causing blood clot (radio interview)

*Added Nov. 2013* 41-year-old Scott Tatro, locked in after a chiropractor:  https://scottslockedin.com

*Added Nov. 2013* Talented 16-year-old daughter vividly describes her mother's stoke and what it has been like since (3-part blog series): The Stroke

To connect with a personal stroke friend, please visit the Stroke of Grace Email Buddies page!


Books, Movies, Media
My Pinterest stroke page is filled with more resources, stories and stroke-related thoughts. You might also find my therapy page to be a little bit helpful. My Facebook page is intended to be educational for the general public to be aware of strokes, but also contains a few personal stroke-related thoughts at times.

The Stroke of Grace (not mine, I just heard of this one and have yet to personally investigate), testimony of former NBA player Juaquin Hawkin (novel, 2012)

A Stroke of Grace: For Those Who Suffer and Those Who Care Strokes (again, not mine and I haven't read yet), David Loren McKenna and Patricia McKenna Seraydarian


A Stroke of Genius: Messages of Hope and Healing From a Thriving Stroke Survivor by Sandy Simon, Christiane Collins, Jean Goode and Sarah Laffe (I haven't read this one, but the title looks good.)
Stronger After Stoke: Your Roadmap to Recovery by Peter G. Levine. (I haven't had a chance to read this one either.)

Nathalie's Story by Nathalie Aubertin. I couldn't quite decide if I should list this with blogs and personal stories or books, as it really fits with both. Since the website is all about the book (I don't see an ongoing blog or anything like that), I am choosing to put it here. Nathalie states, "I had suffered a stroke at 15 years of age. As a result I am quadriplegic and speech impaired. I am now 39 years old. With the use of a mouth-stick I typed one letter at a time until the book was completed."

Letter From Your Brain good, short, read for all brain injury survivors and those who love them

Young Stroke Film by 23-year-old Becki Cobb (UK) 

Short, educational story for children about aphasia after stroke. Great for adults too!

Mechanics of a Vertebral Dissection (about 4 minutes)
I was recommended to read My Stroke of Insight: A Brain Scientist's Personal Journey by a couple of hospital therapists. Upon coming home, I looked the book/author up on the internet and found a YouTube of the lady describing how she had "found nervona" through her stroke. While an interesting an inspirational speaker, I decided this book isn't for me, even though I have never read it. For anyone looking for resources, I thought I should mention that, as it is a popular and highly recommended title.


Support Resources and Organizations
In case of an emergency (emotional, mental, or obviously physical), in the United States please call 911, or in emotional crisis, the National Suicide Hotline at 1-800-273-TALK or the suicide hotline phone number at 1-800-SUICIDE or find support numbers in other countries by using the simple search box at BeFrienders.org.
Stroke Warning Signs - know the signs of stroke and when/how to act to obtain help.

Stroke of Faith - "This Christ-centered blog is designed to serve stroke survivors, families and friends, through sharing experience and faith. My own stroke came on May 8, 1998. God provided medical professionals, friends, fellow believers, and strength to get me through some struggling recovery times." - Jeff Porter, stroke at age 39

StrokeNet - stroke message boards, chat and community.

National Stroke Association

Bellaflies -  pediatric stroke foundation

Defeating Stroke - Very small, low traffic, Facebook page for stroke survivors 55-years-of-age and under. Probably about the speed I would actually have been able to handle when I first started getting back online.

The Stroke Coffee House - Very large, active Facebook group "for stroke survivors , care givers, family and friends or anyone who wants to help raise stroke awareness and support." in an imaginary coffee house. This is a place to share and enjoy chit chat with friends and new friends, just like in a real coffee house setting. (This is a very fast moving, mostly social group, comprised of all ages, but many 20s-40s survivors as well as a fair contingency of "young at heart" - posts are not typically Christ-centered, though the primary founder was apparently a strong Christian and several of the current moderators seem to be open to things of the Lord as well, but while I have lots of fun and have made several great friends there, buyer be warned that I take no responsibility for pictures, language or other content you may encounter there!) There is also an affiliated prayer and fellowship page specifically for Christians at Higher Grounds (formerly called Godly Women and Men Chapel), so if you join the main group and desire more Christian content, you may then request to be added to this private group as well.

*Added April, 2014* Young Stroke Survivors Facebook support group, and the Spanish-speaking sister group at Los sobrevivientes jóvenes con EVC (evento vascular cerebral) - NO MENTION OF GOD ALLOWED IN THESE GROUPS :( I'm sharing them because many issues, unique to a younger population of stroke survivors, are addressed here, while I haven't seen them tackled elsewhere and I love that there is also this Spanish-speaking resource. "A group for stroke survivors under the age of 55 to connect to other stroke survivors. Meet others/share stories/whatever you want to use it for. You don't have to still be under 55, just 'young' when you had the stroke."

*Added Nov. 2013* The Stroke Awareness and Support Association (SASA) is a 501(c)3 non profit organization with a mission to raise awareness on the prevalence of younger strokes occurring each year in the U.S., and to provide support directly to younger stroke victims and their families.

A few more resources, related to all types and causes of Traumatic Brain Injury (TBI) found at be BRAVE.



Therapy and Adaptive / Independence Tools

If you are interested in having me review your product for consideration on my blog, you will want to visit my Review Policy.

Several of my posts include therapy and rehab videos of various stretches and post-stroke exercises that may be helpful to you.

iHOPE webinars are "ideal for anyone interested in learning about medical and lifestyle issues that affect people after a stroke. Webinars are pre-recorded while Ask the Experts Q&A sessions are live. All are available on demand for free after their debut." Topics include issues such as aphasia, atrial fibrillation, caregiver needs, depression and emotional issues, fatigue, bladder management, medications, nutrition, sex, spacisity, vision and more.

Stroke Nation (at home therapy ideas)

From Pintrest

The Listening Program (brain reorganization and development)

Piano Wizard - not specific to stroke, but wonderful for brain rehabilitation in general. Just watch!


 BrainHQ Brain training exercises via computer games, based on similar research to Luminosity, but recommended by my therapist as specific to brain recovery or rehabilitation. Why you should use BrainHQ.

All cotton Compression Socks (diabetic or other circulation issues)

Re-usable, washable, traditional look/feel Incontinence Underwear
The National Stroke Association reports, "Research shows that up to 80 percent of stroke survivors suffer from incontinence after a stroke. The good news is that using multiple approaches has been successful in treating as many as 70 percent. Watch our newest iHOPE webinar, BladderManagement After a Stroke..."

Magnetic Button Dress Shirts (great for hands that struggle to work traditional buttons) "MagnaReady"

Shoulder Subluxation sling (reader recommended)

Driver Rehab Products (reader suggested)

If you are interested in having me review your product for consideration on my blog, you will want to visit my Review Policy.



Resources for Family and Caregivers

How To Cope When A Loved One Has A Stroke 

StrokeNet - stroke message boards, chat and community, including resources both for stroke survivors and caregivers

Stroke Survivor Blog Kathy Bonchery shares 5 1/2 years of journals of her care for Steve (now diseased), along with resources for "stroke survivors, stroke victims, caregivers and others might find peace, hope and encouragement."

Sexuality After Stroke

Care Giver Burnout very short video

Resources for Family Caregivers

Stroke Warning Signs - know the signs of stroke and when/how to act to obtain help.
 In case of an emergency (emotional, mental, or obviously physical), in the United States please call 911, or in emotional crisis, the National Suicide Hotline at 1-800-273-TALK or the suicide hotline phone number at 1-800-SUICIDE or find support numbers in other countries by using the simple search box at BeFrienders.org.



Other Helpful Links (not stroke specific)

Joni and Friends - Great Support and Encouragement for Any Form of Disability.

*Added Nov. 2013* Give It 100 - Trying to learn a new skill? Therapy? Juggling? An instrument? Dancing? Record yourself 10 seconds, every day for 100 days and watch your progress!

Still trying to figure out what's going on with my Trigeminal Nerve (TN). TMJ we think, but the strokes messed up my ear, neck and shoulder too, so it's not just classic TMJ! Pleas see the links at the bottom of my chronic pain information page for more resources on issues such as this. (Nov. '13 update: It seems we do have TMJ (mild, pre-stroke issue) pretty severely flared up now, aggravating the TN, and compounded by several early months of left hinge misalignment/dislocation possibly from first day stroke intubation.



Inspiring Stories (not usually stroke specific, but all are must watch stories!)
If you have any others to suggest or know of better links (most right now are linked to FaceBook and I know not all my reads have FB accounts, so I would like to make the videos more accessible!) such as links on YouTube (so I could post the videos directly on the page) or the originating websites, please let me know! 

Stories That Inspire Me (stories on Pinterest)

Richie Clark - I know his parents!

Duck Tape Surfing

Take Note

No Words to Describe...

What is Love? (love her bike helmet!)

1930: Rare footage of Helen Keller speaking with the help of Anne Sullivan!

Never Give Up (must have Facebook account to view this one)

*Added Nov. 2013* Give It 100


Found on Facebook.


Last Updated: March, 2014
Compiled by 39-year-old multiple stroke survivor, Jennifer Saake - StrokeOfGrace.blogspot.com

3 comments:

  1. I would very much like to recommend subluxsling.com for help with sublux shoulder pain

    ReplyDelete
  2. Wonderful article, thanks for putting this together! This is obviously one great post

    Work Injury Therapy & Shoulder Pain Specialist CT

    ReplyDelete