Page Changes and Updates

Due to growth in our submissions, we took this opportunity to split up one of our pages into 2 different pages for your convenience.

Our original page used to be called Support Groups Sites and Books. This link will no longer work. However, we still have all of the great resources from this page now split into 2 pages.

These pages have been changed to:

Support Groups, Sites, and Organizations

Survivor/Caregiver Blogs, Books, and Music

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REVIEWS and TESTIMONIALS

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New Page Created –

Hello my fellow HOPEsters. I am so very excited to introduce and offer some additional and new opportunities and resources to bring awareness about brain injury and polytrauma to our followers, supporters, advocates, and new HOPEsters on a global level

Can you believe we have been around for 8 years now?

While we will continue to offer all of you many free resources here at HOPE TBI, including relatable content through an active Blog, numerous resources, our tireless research on various topics, an evolving informational podcast, networking opportunities, and help in creating and e-publishing your stories – we are now also offering some other additional options as well.

We have partnered with Vital Ability, LLC to bring you even more options here at HOPE TBI.

(*** DRUM ROLL PLEASE ***)

We are now able to offer informational workshops tailored for your organization, group, class or event.

We also are now able to offer supportive services at an elevated level through our new medical advocacy consultant services with monthly memberships. at a considerable and affordable option for those interested in a bit more than what we offer for free.

Check out our paid services page under the “About Our Site” tab at the top of the page on the left (first tab on the menu list if looking at this from your mobile).

Let us know what you think check out the page and let’s see those messages start flying. Help me welcome Vital Ability, LLC as a partner.

Paid Service Options

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Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here: Reviews and Testimonials

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Thank you for visiting us! We look forward to hearing from you.

Progress In Canada Halted

Hello to our neighbors in Canada!!!

Phonomenal and groundbreaking news that had been spreading like wildfire there since May 2021 and then again in November 2021 – only to be met by disappointment and seemingly caught up in global financial politics and escaping what the focus should be: benefit of rehabilitation for the patients.

In a major development for brain injury survivors across Canada, the Canadian Association of Nuclear Medicine (CANM) adopted, ratified and endorsed Guidelines for Brain Perfusion Single Photon Emission Computed Tomography (SPECT).

Essentially, what this means is that the SPECT scan is now medically recognized for the diagnosis and prognosis of traumatic brain injury (TBI). The SPECT test shows in much clearer detail the presence and extent of the brain injury (especially mild TBI), something that MRIs and CT scans cannot.  See this article

Then the Ontario Superior Court of Justice released an important decision in Meade v. Hussein, 2021 ONSC 7850 regarding the use of single-photon emission computed tomography scans (“SPECT scans”). Justice Bale found that SPECT scans failed to meet the reliability foundation test for novel scientific evidence. See this article

This is of global interest and has the potential of benefiting millions of people affected with brain injury. It was noted that the the Canadian Association of Nuclear Medicine (CANM) unanimously adopted new procedure guidelines for brain single photon emission computed tomography (SPECT) imaging for psychiatry and neurology. The prestigious scientific body endorsed brain SPECT imaging for the assessment of many common issues affecting tens of millions of people. See this article

This is surely going to be a very hot topic where the medical community is finally catching up with technology and years of research. Sure to be on the forefront and not going away any time soon is the focus of getting our laws to also catch up with medical and technological discoveries.

This would also involve getting the Insurance industries on board to provide coverage for this diagnostic necessity and to provide better rehabilitative care to our survivors of brain injury and those suffering with mental illness.

See this article

See this article

Already we are seeing bucks in the system to discount and argue against science ( an ongoing and disturbing trend). See this article

Keep up with the developments with these organizations:

The Brain Association of America

Brain Injury Canada

Brain Injury Conference Canada

Ontario Brain Injury Association

Brain Injury Association United Kingdom

https://www.headway.org.uk/

I can speak from personal experience about my SPECT experience. It was a game changer for me. It validated all of my symptoms. It helped me not feel crazy, but allowed me to know just what to focus on as part of my rehabilitation process.

Having “proof” for something you know is true, because you are living it, is an overwhelming relief and was a hugely emotional process for sure. I was determined to get answers, one way or the other. This process helped me to be able to then focus on what I needed to improve and work on, to let the healing commence, and be able to move on to acceptance in the grief and transformation process of re-inventing myself. The results of the SPECT allowed me to be able to talk about my injuries in a more educated and informed manner.

I honestly wish I had been able to access the services from day 1 of my injuries. It would no doubt improved and perhaps even shortened the rehabilitation process. I am a staunch supporter of the SPECT scan and am hoping that there are ongoing landmark and groundbreaking determinations that benefit the quality of life of all patients.

See our Page about SPECT

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Blog and Updates

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Brain Injury Radio – August Episode

Come and listen this coming Wednesday 8/10/2022 at 10pm EST as Kim and Co-Host Caren, will be discussing Navigating Mental Health after a Brain Injury, and reframing our thought patterns.

Can a brain injury lead to mental health conditions? How can we help ourselves self-regulate?

Wednesday Radio Show – 10pm EST

CHECK OUT OUR OTHER SHOWS:

Radio Shows with Caren Robinson and Kim Justus

Caren Robinson – Survivor

Check out the Orginal HOPEster. The Survival Story of our HOPE TBI founder.

It’s been a while since I have shared my story and I wanted to share it with those of you who may not know it. Thank you for being here as part of my ongoing recovery. I just wonder if we just continue in our process for the duration of our entire lives.

Isn’t the brain and the body magnificent?

“My name is Caren Robinson. I have always been a busy gal. Adrenaline junkie to some regards. Loved riding motorcycles, roller coasters, diving off bridges to go swimming, and also anything to do with The Arts really. I have always had a job since I was … Continue reading HERE….”

My Story page has gotten a wee bit of a face lift, and a few more clarification and more information added. Funny how as time passes, things are easier to talk about. At least some things.

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

Reviews and Testimonials

Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

Newest HOPEster – Cathy Law McLaren – Survivor

Help us welcome our newest HOPEster. Cathy is from Everett, Washington.

“I got in a very bad car accident on August 8, 1976 when I was 14 and preparing to go to high school. I was born in the 60’s (1962 to be exact). That was a time when not a lot was known about the after affects of sustaining a severe head injury……..”

“…..If I could share any one message with all of you out there in the world, it would be to not give up. It’s never too late to get help, and keep fighting to get where you want to be in life, even if you have to do it a little bit differently than others.”

You can read her story here: https://hopetbi.com/cathy-law-mclaren-survivor/

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

Reviews and Testimonials

Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

Key Tips For Hiring Differently-Abled Employees

Differently Abled Workers

One of the biggest challenges is finding new hires who have disabilities. It’s difficult because they might not have the opportunity to work in a job where their disability is accommodated. For example, someone with hearing difficulties might be limited to jobs that can easily be vocalized.

If you want to attract differently-abled employees, you’ll need to put structures in place to accommodate those disabilities. In this guide, HOPE TBI shares some key tips for making your workplace more inviting to more diverse people.

Ideas to Attract Differently-Abled Applicants

SHRM suggests creating a more inclusive culture, making sure your website can work with assistive devices, offering career planning opportunities, and more. Reasonable accommodations are also important for different types of disabilities, such as allowing for part-time work, providing accessible transportation options, or any other type of accommodation that would help support your differently-abled employees.

Incentives for Differently-Abled New Hires

You should also think about what incentives you can provide for people with disabilities. For example, what if you offer an internship program for people with disabilities and then hire them once they graduate from the program?

It’s a win-win situation because you are able to reach out to this target audience and offer them the opportunity for advancement while providing valuable experience and skills training at the same time. Offering career planning opportunities can also help attract differently-abled new hires. It’s important that they have opportunities to think about their long-term plans in order to feel confident and empowered in any role they pursue.

Revamp Your Recruitment Process

When it comes to recruitment, make sure you’re including all different methods of sourcing and hiring. Keep in mind that people with disabilities are a viable pool of talent to consider when you’re looking for new hires.

For instance, IMPACT notes that you can make your website more accessible to those who need different types of assistive devices by making sure everything is in plain English and using contrast colors for text. You can also offer opportunities at your company for internships or mentorships for those with disabilities.

Finally, think about how your process may be excluding this group from applying. Maybe you don’t have an option on the application form for people who have certain types of disabilities? In order to find out where this might be happening, provide contact information on the application form so that people can ask questions.

Create a Budget for Reasonable Accommodations

If you’re interested in being an employer of differently-abled individuals, budget for reasonable accommodations in the workplace. This includes office supplies and furniture that can be maneuvered to suit those who have physical disabilities. For example, consider providing a desk chair with wheels so that an employee who uses a wheelchair can roll from place to place instead of having to walk around the entire office.

Other accommodations may include louder alarms or bigger signs because some people with hearing impairments or dyslexia may not hear or read things correctly. Budgeting for these adjustments will help you attract more diverse talent to your company.

In addition, a critical housekeeping step is to establish yourself with the state to make sure you are compliant with tax laws. This is also essential in your EIN application, which is necessary for the IRS to use in payroll taxes and if you offer retirement plans.

Finding Differently-Abled Applicants

Michigan has several programs designed to provide disabled population services, as well as other related services. This is a good place to start if you want to connect with differently-abled people who are looking for employment.

HOPE TBI helps take the struggle out of finding resources and information when someone is faced with a trauma from a polytrauma or brain injury, and the resulting conditions from those injuries (acute or chronic pain, symptoms, experiences, processes, etc.) and various treatment options available. Connect with us today to find out more! hopetbi4ever@gmail.com

 GUEST BLOGGER: Diane Harrison of HealthPSA.info

Image via Pexels

Keep HOPE TBI Services FREE

SEEKING SPONSORS and DONORS

Hello Fellow HOPEsters!!!

Not sure if you are a HOPEster? Check out our definition here: https://hopetbi.com/2018/07/16/be-a-hopester-2/

Did you learn something, read anything that inspired you or impacted you on the HOPE TBI site at https://hopetbi.com/ ?

HOPE TBI brings awareness, educates about self-advocacy, and helps take some of the struggle out of finding resources and information when someone is faced with a trauma from a polytrauma or brain injury, and the resulting conditions from those injuries (acute or chronic pain, symptoms, experiences, processes, etc.), and treatment options available.

Do you support bringing awareness to the topics written about and want to see more content? Check out our Blog at https://hopetbi.com/blog-and-updates/

Keep HOPE TBI active, growing and it services FREE.

You can support general operations, outreach, and awareness efforts of HOPE TBI by being a donor or sponsor at https://hopetbi.com/donations/.

(all yearly donators of $500 or more have the option to have their name, “in memory of” name, or business name/logo listed on our “Sponsors” page for one year after donation made)

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here: Reviews and Testimonials

Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

Having Faith

FAITH is stepping on the “seeming void” and finding the rock beneath.  

                                                                         With FAITH comes HOPE. 

Where there is HOPE there is FAITH

                                                         Where there is FAITH 

MIRACLES happen.

I can say with pure conviction that I would not have survived all that I have this far into my life without a strong connection to my Faith and my deep Spiritual Connection. I can say that throughout this recovery process, there are times when it feels that all I have that is consistent is my Spiritual self and my every present, life clinging grasp onto HOPE.

I am not without humility when it comes to the fragility of life in general.  I am truly in awe of the miraculous events, too numerous to be coincidental, involving the wreck I was in and all of the circumstances in my life since.  There were angel wings wrapped around my son that day.  It is the only explanation for his survival….the only explanation for my survival.  My continued courage to overcome seemingly insurmountable difficulties, medical and otherwise have only been conceivable due to my connection to God and the abiding Faith that I embrace.  This propels me and gives me strength to never give up HOPE.

“Can’t” is not in my vocabulary as a general rule.  I have never been that type of person to accept “can’t” as an acceptable answer.  I feel this limits the education and growth of ourselves as individuals, professionals, spouses, family, parents, and friends. If at all possible, rid this word from your life. Instead replace it with “can attempt” “can make effort to” “can do it” “can accomplish” “can change my thinking about” and any other word or phrase that includes your ability to put forth the effort in living the opposite of “can’t”.

One of my favorite verses is Phillipians 4:13  “I can do all things through Christ which strengthens me”.  This has fueled me for years.

I lived through this wreck for a reason.  I was meant to survive.  There is a plan, a special plan for my life.  My life matters. I truly believe this. I am not here to merely exist without offering some meaningful contribution to my family and the world.  I have been led to serve others my whole life.  I have enjoyed this life of service immensely.  I am grateful for the blessing that I have been given to continue my life’s journey. Sometimes, I am not sure why I was CHOSEN to live, while others with far less injuries have died – but I will not waste this time.  It is precious, and every moment counts! 

My dad used to say that many are “LED” but few are “CHOSEN”.  I never understood that very much as a child, however, I feel I am getting a better grasp on this as an adult – especially as one who continues to survive from a Catastrophic and Life changing event (but then aren’t all life events life changing?)

I find myself led to continue to write about, speak about, and educate about my Trauma, my Survival, my Rehabilitation, and Self-Advocacy –  so that others may perhaps find something useful from my experiences and I have a written expression of healing. I am enormously grateful to my mother for starting a blog for me in the beginning, and for being a testament for my life.  The timeline of events that she has written about has been very helpful to me as well and helped me fill in a lot of blanks for things I just do not remember.  I love seeing her posts and hearing her words like a warm blanket of protection.  How she knows how to say just the right things still amazes me.  I hope, in the end, that my kids love me as much as I love her; as much as she has helped me to continue to love myself.  She is amazing. 

I am blessed with a selfless and loving husband as well.  He has sacrificed much for me.  He makes me feel beautiful and shines light in my life, even in the darkest of nights. Not only did God Choose me, but so did he.  My love for him is unyielding and he is simply the best man I have ever known in my entire life (before and now). He is beyond amazing and I am truly fortunate to know such love.

My HOPE is that I continue to evolve professionally and personally. My HOPE is to continue to be led to the proper medical care,  and interventions to help me further my life as a functional, active, evolving, spiritual and passionate human being. My HOPE is that my family is continually blessed with support and strength to endeavor this journey with me.  It has not been easy on them either.

I realize I will never be the same Caren I was before the wreck.  That much is abundantly clear. The “new normal” I embrace I am still getting to know…….even years later. From being bent and literally broken, to a process of healing that incorporated plates, screws, nails, modern day technology and a sheer will to survive. I have been able to find value in the life I have been gifted to live. I am not perfect, I am far from it. There are struggles that still challenge the fabric of my existence. There are challenges and fears I still face. Sometimes, on a daily basis. However, I am grateful for the opportunity to face them and continue becoming the best version of myself possible.

We are allowed to be a masterpiece and a work in progress. I am a work in progress, my life is my masterpiece, and I am not giving up on ME.  Your life, your story, your experience, your sheer grit to survive is your masterpiece. I see you. You are not invisible. Don’t give up on you.

If you are reading this, thank you for being here at this moment.  Please don’t give up on me either.  With your help, your ongoing support, your presence, your intercession, your skills, your energy – real or virtual, all things are possible.

Have FAITH.  Never give up HOPE.

                            With FAITH comes HOPE

Where there is HOPE there is FAITH

Where there is FAITH.  MIRACLES happen.

I AM LIVING PROOF OF THAT!!!

Grief and Renewal

Brain Injury Radio Show – Listen to our April 2022 Episode – HERE

Easter actually began as a pagan festival celebrating spring in the Northern Hemispherelong before the advent of Christianity. “Since pre-historic times, people have celebrated the equinoxes and the solstices as sacred times,”   Later, Easter became recognized as the highest celebration of Christianity. Because the resurrection establishes the belief in life after death. Happy Easter if that’s youHowever you believe, spring signals a time of renewal, when new life and color emerges.

Add the Virus and other news hot topics the past few years, and there has been ample opportunity for us to have reason to grieve. With more isolation, lock downs, fear mongering .. Grief over real losses of all kinds, has perhaps been even harder to bear. Grief is stressful enough, but add everything else mentioned, and no one has been immune to grief. We must take time to grieve, or we would never fully appreciate gratitude.

Tonight we discuss grief and renewal for brain injury survivors. We’ve felt the sorrow, now how do we refresh and move forward?

This show is a gathering place for anyone seeking recovery from the challenges of life on life’s terms. We discuss useful tools that have helped us lighten the load, of our journey through recovery. This is a “we” recovery program, because it is in the “we,” that we find the new “me.”

We focus on the four A’s of Recovery: Awareness, Acceptance, Action and Adaptation. This is a place for survivor’s striving to become thrivers, which takes a good bit of Warrior!

Hosted by Kim Justus, author of In a Flash: Miracles Here and Beyond and Hootie’s Hollow and the Magic Tree found at inaflash.org and Amazon & “Like” me at facebook.com/inaflash.org too! For More on Caren’s great Blogs and Resources see: hopetbi.com

Other Radio Shows with Caren Robinson and Kim Justus

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

Reviews and Testimonials

Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

Newest HOPEster Ramona – Caregiver

This is where it all began. The HOPE TBI Blog and the HOPE TBI Website.

It all began with my mom starting a blog and fundraiser on my behalf, years ago. My mom has been one of the many valuable supports in my life, through everything. She never gave up on me; for that I am grateful.

I asked her to collaborate with me to do a story page to honor her and the process she put so much effort into on my behalf. This is that story.

(Click on Name to access story page)

Ramona Andrews – Caregiver

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

Reviews and Testimonials

Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

Brain Injury – A Disease Process

This is an excerpt from the Paper written by renowned Neurologist “Masel”:

“……The purpose of this paper is to encourage the classification of a TBI not as an event, not as the
final outcome, but rather as the beginning of a disease process. The paper presents the scientific
data supporting the fact that neither an acute TBI nor a chronic TBI is a static process—that a
TBI impacts multiple organ systems, is disease causative and disease accelerative, and as such,
should be paid for and managed on a par with other diseases.
Despite the fact that patients with a TBI who survive the acute event do not die of their brain
injury per se, a TBI is a disease…….”

Masel, B. Conceptualizing Brain Injury as a Chronic Disease. Vienna, VA: Brain Injury Association of America, 2009.

REPORT in PDF Format: http://www.lexisnexis.com/documents/pdf/20090513025855_large.pdf

WEBINAR: http://www.braintrauma.org/february-2011-webinar/

Is Brain Injury a Chronic Disease? (Commentary Regarding The Brain Injury of America’s “Conceptualizing Brain Injury as a Chronic Disease”)             http://www.braininjurynetwork.org/thesurvivorsviewpoint/achronicdisease.html

Brain Injury Radio Show with Dr. Brent Masel.

Quantum Leap: Dr. Brent Masel on Transitional Learning after TBI

Golden Girls Explain Golden Opportunities

This is a post I wrote just as I was really learning to claim my role as an advocate for myself. It was a turning point for me, in truly learning to trust my body and not necessarily what I was told about my body. It was when I decided to trust MYSELF, and to speak up when I felt or knew something was wrong.

This experience with this nightmare provider was someone I should have been able to trust. It turns out he took advantage of that trust. This experience brought me to a painful realization that not all doctors respect the “do no harm” oath.

In fact, if left unchecked, those who don’t value that oath, can cause a great deal of additional irreparable harm to their patients, can absolutely cause medical PTSD, and change the course of a patients care for the worse. I share this again as it should not be forgotten.

Find your voice and speak up for yourself. You are worth it

(previously posted elsewhere in 2014, yet worth reposting)

The Golden Girls

Golden Girls Explain Golden Opportunities

TBI is an invisible disease….so is PTSD….and so are things that are obvious injuries if NOT actually checked…..if the doctors actually LISTENED to their patients and did the tests and procedures they were supposed to  from the beginning rather than making judgements without following through – or without actually consulting the patient about their decisions.

This is essentially what happened to me too. I was in a vehicle accident with polytrauma and Traumatic Brain Injury and several fractures. Then I keep complaining all through therapy that my pain was worse and I was losing strength on my right side. I was released to attend PT OT and ST without restrictions that during and after therapy….I spoke of my pain and limitations often. Not the referring Orthopedic Dr. nor the Rehab Dr. ever did a CT Scan to follow up on my pain or x-rays of all the previous fractures. In fact, the Rehab Dr. said it was probably all anxiety related and I needed to put in “more effort”…He even held my arm up and dropped. I couldn’t hold it up on my own. He thought I should try harder – what he didn’t accept is that I was giving it all that I could. It just wouldn’t work….and now I know why. As it turns out for the last 9 months I finally get that CT scan and it shows that my ribs 2-11 are still fractured and displaced with NO HEALING…and that shattered and fractured scapula on the R side?….YEP….no healing either. I am now scheduled for surgery Oct. 8th to plate and put screws on each rib and reconstruct my scapula/body and plate and screw those as well…..obviously THEY weren’t putting in enough “effort”…. if they only listened to me. Feels good to be validated and know that I can actually trust my own judgement about my body though…my PCP on the other hand has been great so far….I have a medical case manager too who has been advocating for me as well….I can say that they only added to the anxiety I was already having about the wreck in general….those other doctors, that is.

This is a great episode from the Golden Girls show about Invisible Illnesses where she confronts the Dr. who didn’t listen to her…..this is just AMAZING!!!

I only wish I could do this with my Nightmare Doctor….

Compilation of all the doctors Dorothy went to and the process she went through to get answers:

Confrontation by Dorothy to Dr. Budd

Both Empowering and worth watching!!!

Eight Is Enough

Some of you may remember this show back in the late 70’s, early 80’s.  For those old enough to remember..this was about the Bradford family, which consisted of 8 very independent children and the trials and tribulations of growing up, facing important decisions, and other tough topics of that time.  They had a father, Tom, who to me seemed quite oblivious to a lot of common sense solutions, yet when it counted, came through as a great source of love and support for his family.

There were a lot of movies, TV shows, and other depictions of families that carried us through relatable, humorous, and sometimes downright serious content and the process of life transitions, which we would stay glued to the TV or Big Screen to see just how things turned out, see justice done, capture a glimmer of hope, or just escape to be entertained for a wee bit.

In those moments, of living vicariously through our favorite character’s lives – we shaped our view of not only ourselves, but the world around us.  We shaped our views on advocacy, education, societal roles, relationships, our sexuality, and they challenged us to think outside of ourselves just a bit….especially if they included controversial content – personal writing ahead of its time really.  When a character would be removed from a show, killed off, or somehow taken in a different direction – it sometimes affected us deeply – especially if we watched them grow up or felt we were growing up with that character as well. Relatable, right?  It sometimes felt like we were losing a friend or loved one of our own – even though, by all accounts, this was completely unrealistic.  How could we go on?  Yet we did.  One day moved into the next, a new show, new series, new movie emerged and suddenly the previous experiences though remembered, became a distant memory, now replaced by better writing, CGI, better special affects, powerful acting, and tapping into those topics that often remained previously untouched. 

Some of us also no longer had time for that level of commitment to a “character” because we were building our own “character” through our lives, our own careers, our own families.  Striving to make sense of all the changes, the challenges, the amazing tribulations, the absolute exhaustion that being a responsible adult brings.  How could we go on?  Yet we did.

We all have experienced trauma in some sort.  Some from their first breath out of the womb, some their entire childhood, some their entire life in one form or another; some – a one and done situation which impacted the entire fabric of their lives despite all the good that exists around that one trauma.  Some of us persevere, some don’t.  There are so many factors that influence all of those changes and the way we evolve through them….or don’t. I am not even going to begin to attempt to list them all here.  Yep, there are that many.  We wake, we wonder – How could we go on?  Yet we did, and we do.

In this moment, as I reflect on my life on this 8 year Anniversary of the wreck that changed my life forever, in every aspect…..I am struck with examining all the characters in my life, my influences, my beliefs, my moral compass, and I think of all that I have survived and continue to endure.

I think of the effort required to overcome unimaginable pain, hopelessness, limitations, a stripping of life, dreams, and independence since that fateful day.  There were a multitude of moments where I would cry, rage, and scream…perhaps even laugh hysterically at the irony of things being the opposite of what I envisioned for my life at that time and since.  The stages of grief became my daily association with that one question that no matter how I progressed or what kind of HOPE I held….still loomed waiting for answer.  How could I go on?  Yet I am, and I do.

During this process of trauma, re-inventing myself, effort, and personal growth – I have learned some very hard, valuable lessons.  Some I am truly grateful for…others, not so much.

I have had my rose colored glasses ripped from my face, stomped on, crushed into the ground, and damn near destroyed from an repairable possibility.  However, once you see things from the way they actually are vs how you think they are….well….now that has a life altering affect of its own.  Which way you allow it to take you depends a lot on your own mental fortitude and ability to CHOOSE to go on, CHOOSE to survive, CHOOSE to be the best version of yourself in this very moment.  It depends a lot on whether you CHOOSE to accept and embrace the smallest victories, the smallest growth, the smallest blessings.  How do we go on?  We CHOOSE to.

I still enjoy watching a bit of TV and a movie here and there.  It is interesting to see how the writing in the shows nowadays differs a lot from my younger self’s experiences with the progression of each character. I find myself, with the assistance of technology, social media communities, and access to a plethora of information readily available at my fingertips…..that my possibilities for research, growth, healing, advocacy, and a life drenched with an unpredictable next step – have been forming that picture on life’s big screen in answer to the beckoning call of each Anniversary that reminds me that I am still here….thriving….without even knowing I could sustain as long in this form…as I have. 

I am struck with reflecting on this being the 8th year since the wreck.  The 8th year since I fought for each breath and each step and each ability.  The 8th year of creating a living visual answer of….despite starting over and over and over –  “How do we go on?” 

I am left with this.  Eight is Enough.  Enough time to decide to live; Enough time to choose HOPE permanently; Enough time to continue to vibrantly live a life of gratefulness, appreciation, and acceptance of what is, and what isn’t; Enough time to speak my truth, sound my voice, and share my words without feeling self-conscious about what others think about my experiences, or me as a whole person.  Enough time to decide to not just plan, envision something someday, not just try….but do.

Eight is Enough.  Enough time to finally be able to say out loud….”I am disabled, but I am more than my disabilities.  I am doing, and will continue to, do the best I can every day…and THAT….is enough!

National Concussion Awareness Day

Today is National Concussion Awareness Day, started by Brooke Mills in 2016.

https://nationalconcussionawarenessday.com

#NationalConcussionAwarenessDay

#ConcussionAwarenessDay

National Concussion Awareness Day is celebrated on the 3rd Friday of September. Bringing awareness prompts you to study the signs of concussions and take them seriously, as they are a brain injury.

Concussions have become an epidemic in the United States, with millions of traumatic brain injuries happening each year.

A concussion should be suspected if there have been both: A blow to, or sudden whiplash injury of, the head, and any of the following symptoms:


•Headache
•Dizziness or poor balance
•Sensitivity to light or noise
•Blurry vision
•Feeling in a fog
•Feeling generally not right
•Trouble sleeping
•Drowsiness
•Trouble concentrating or remembering
•Irritability or emotionality
•Fatigue
•Confusion
•Sadness
•Nervousness or anxiety
•Brief loss of consciousness

If an individual experiences a hit to the head coupled with any of the above symptoms, a concussion should be suspected and the individual should be removed from sports until evaluated by a provider trained in concussion care.

As concussion gains more of an international spotlight, there’s still a shortage of doctors equipped to handle concussions.

https://www.concussion.org/news/national-concussion-awareness-day/

http://www.hopetbi.com #hope_tbi

9/11 – We Remember

Do you remember where you were? I do!

On September 11, 2001 our Country and the global community would endure something that scarred its heart, shook us to the core, and struck fear in the lives of many around the world.

More than 90 Countries lost citizens in a series of attacks.

It was a time we all became painfully and acutely aware that freedom is indeed not free. Our resilience is what unites us. Unity is what helped us get through it. Unity is what will help us to keep surviving.

We will never forget!

Here are the names of the people who have died from 911 Attacks. WE REMEMBER!!!

https://www.911memorial.org/visit/memorial/names-911-memorial

During the September 11 attacks in 2001, a total of 2,751 victims were confirmed to have died in the initial attacks.

September 11 by the numbers. The amounts are just inconceivable.

https://nymag.com/news/articles/wtc/1year/numbers.htm

As of August 2013, medical authorities concluded that 1,140 people who worked, lived, or studied in Lower Manhattan at the time of the attack have been diagnosed with cancer as a result of “exposure to toxins at Ground Zero

2,977 people were totalling in the aftermath of the tragedy – this included 19 hijackers that committed murder–suicide, and more than 6,000 others were injured.The immediate deaths included 265 on the four planes (including the terrorists), 2,606 in the World Trade Center and in the surrounding area, and 125 at the Pentagon.

Most of those who perished were civilians except for 343 firefighters; 71 law enforcement officers who died in the World Trade Center and on the ground in New York City; another law enforcement officer who died when United Airlines Flight 93 crashed into a field near Shanksville, Pennsylvania; 55 military personnel who died at the Pentagon in Arlington County, Virginia; and the 19 terrorists who died on board the four aircraft.

1,647 people who died have been identified through DNA

https://www.nbcnews.com/news/us-news/2-people-killed-world-trade-center-9-11-identified-dna-n1278723

The attacks remain the deadliest terrorist act in world history.[

https://www.usnews.com/news/national-news/articles/2021-09-10/counting-the-lives-lost-as-a-result-of-9-11

History should have taught us something.

HOPE TBI Co-OP and Exchange

Come visit us at the HOPE TBI Co-op and Exchange. Currently serving The United States and US Territories.

Please do NOT list items for sale here! We are a Co-Op/Exchange Group Only (no monies exchanged)!!!

Remember to Bookmark this Group: https://www.facebook.com/groups/HOPETBICoOpExchange/

This group is to list durable medical equipment, supplies, technology, machinery, prosthetics, etc. that you are ‘gifting” for FREE to someone in need.

You may also post a request if you are needing something as well. Please only request item(s) if unable to acquire by any other means. No acquiring items just to sell them.

THIS GROUP IS NOT OPEN TO VENDORS.

[Disclaimer: This group does not support or endorse the exchange of medications or supplements in any form. Please see your medical providers for those needs. This Group or its Owners/Moderators are not responsible for any transactions, equipment, or product exchanges with another member]

    Gifted Items/Needed items can be, but are not limited to: vehicles, hospital beds, wheelchairs, braces, ventilator equipment, oxygen concentrators, traction equipment, personal care aids, books, Posey Lifts, adaptive equipment, Manuals/information, Bathing Supplies, mobility aids, etc – and other items useful to a person with a disability or injury. The sharing opportunities are endless.

We realize that Insurance does not always cover all the needs a person has after experiencing a devastating and catastrophic medical emergency. We also realize not everyone has insurance. We understand being financially strapped, destitute, or handicapped after a life changing medical event.

Being a member of this Group does not imply nor guarantee that you will have your needs met or provided, but merely an additional opportunity to network with those who may be able to help directly or indirectly.

This Group will also allow you the opportunity to share your fundraising pages or place to post your public funding request page links (like Go Fund Me Page, PostHope page, Pay It Forward Page, YouCaring page, Give Forward, Donors Choose, etc). Be prepared to be vetted for authenticity.

It is strongly advised that if you meet anyone offline, that you do so in a public and safe location.


Our 2 Newest HOPEsters – Debbie and Kris

#MoreThanMyBrainInjury

We want to introduce a Survivor story and a Caregiver story.  The battle for survival and quality of life continues with these two powerful stories.  

 

Debbie Webb – “The year was 1990, I was practicing barrel racing and the horse I was riding slipped onto her side.  Upon impact with the ground, I was immediately unconscious.”  Check out her story here: 

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Kris Ruckle-Mahon – “My role went from being a parent to a caregiver on April 11, 2007, something I was not financially prepared for. I was fortunate though, to have a great work and family support system to help us through it.”  Check out her story here:

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Our Newest HOPEster Chasity

Grab a cup of tea or coffee and snuggle in for a read of the Survivor story about Chasity Christian. A survivor of many traumas and how love is carried in different forms – from our newest HOPEster.

#MoreThanMyBrainInjury

Chasity Lee Christian – Survivor

New Page Added – Clinical Neuroendocrinologists

Hello HOPEsters. We are thrilled to be able to share with you a list we have tirelessly compiled of “clinically practicing” Neuroendocrinologists who provide direct patient care.

This is not an all inclusive list and does not include Neuroendocrinologists that are  “researchers or lecturers” only.

Let us know of any others that are not on the list and we would be glad to add them.

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Also check out our Neuroendocrinology page as well, if you haven’t already done so.

Brain Injury Radio and Other Outreach

Check out our latest additions to our Publications, Radio and Outreach page.

PUBLICATIONS, RADIO, and OUTREACH

Check out all the pages under our AWARENESS MATTERS tab:

HOPE TBI Awareness

Publications Radio and Outreach

Support Groups Sites and Books

Supports Sponsor and Recommended Charity Opportunities

Polytrauma/Orthopedic Resource Pages

TBI Resource Pages

Neuroscience In The News

Michelle and Joe Patnesky – Parents of Hailee

Check out the story about a mom fighting for the life and proper care of her daughter who was hit by a car January 2021.

When doctors and therapists don’t have faith, sometimes a family’s love and prayers can work miracles.

Michelle Patnesky, the mom of 17 year old Hailee, takes us on a journey with her family as they traverse the system to advocate for their daughter who has sustained a severe brain injury and remains in the hospital.

https://hopetbi.com/michelle-patnesky-caregiver/

Help me welcome our newest HOPE’sters!

Introducing Vera Quijano – Survivor

Check out our newest story submission. at HOPE TBI www.hopetbi.com

Vera Quijano, a dance and yoga Instructor, who is now dancing to the beat of a different drum after sustaining a Traumatic Brain Injury after surviving a vehicle accident, where she was hit by a drunk driver.

Check out her video interview here:https://hopetbi.com/vera-quijano-survivor/

Also check out a song she wrote about her journey called “Post Concussionist” here: https://www.youtube.com/watch?v=yKLVx5em_fo

At HOPE TBI we welcome Vera as our latest HOPE’ster!!!

Brain Injury Awareness Month

Brain Injury Awareness Month
Join the  #MoreThanMyBrainInjury 
Campaign this March

The Brain Injury Association of America (BIAA) leads the nation in observing Brain Injury Awareness Month by conducting an awareness campaign in March each year.

The Brain Injury Association of America (BIAA) theme for the 2021 to 2023 campaign is More Than My Brain Injury.

About Brain Injury

#hope_tbi

Down The Rabbit Hole during COVID-19

Brain Injury Radio Show

Kim and Caren discussed, reaching out and staying connected during this difficult time in our history. We discussed tips and ways to stay connected.

We took callers .. Interested in hearing how our listeners are coping with the “New World” and their thoughts, fears, feelings.

This show is a gathering place for anyone seeking recovery from the challenges of life on life’s terms. We discuss useful tools that have helped us lighten the load, of our journey through recovery. This is a “we” recovery program, because it is in the “we,” that we find the new “me.”

We focus on the four A’s of Recovery: Awareness, Acceptance, Action and Adaptation. This is a place for survivor’s striving to become thrivers, which takes a large dose of Warrior!

Hosted by Kim Justus, author of In a Flash: Miracles Here and Beyond found at inaflash.org & “Like” at facebook.com/inaflash.org   Co-Host is Caren Robinson found at: hopetbi.com

LISTEN TO SHOW HERE

 

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Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

https://hopetbi.com/reviews-and-testimonials/

Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

The Dirty Dozen – 12 Ways To Cope With Memory Loss

It can be very frustrating if your life is being negatively impacted by your memory loss and someone (often a friend, provider, or relative) who doesn’t truly understand your experience says, “Oh, I forget things too…”

You may hear some people say that everyone has memory loss, especially as we get older.  To some extent that is a true statement.  We all have moments where we walk into a room and forget what we walked in there for, or forget where we laid the keys down at.  However, here is where it differs. Memory loss as a result of a disease process, injury, or due to the use of certain medications is different than the memory loss we experience as part of the natural aging experience.

Several conditions, other than aging can cause significant memory loss.  Some of these may be reversible with treatment.  Some are permanent, even after treatment. Regardless of whether reversible or permanent,  if it is effecting your life in a negative way, or robbing your quality of life, you may find some of the tips below to be helpful in helping you manage the memory loss you or a loved one may be experiencing

Some examples of memory loss that are not included in the natural aging process are the following:

  • Brain injuries – traumatic or acquired (such as blunt force trauma, accident, encephalopathy, falls, blood clots, stroke, transient ischemic attack, aneurysm, medications, drugs, etc)
  • Result of brain surgery (all surgeries carry risk, especially surgeries involving the brain – examples may include shunts, removal of diseased tissue or tumors, repairing bleeds, repairing puncture or crushed wounds, etc)
  • Brain Diseases (like a tumor, hydrocephalus – fluid in brain, or other rare disorders) and other Diseases (like Huntington’s, Muscular Dystrophy, Parkinson’s Disease)
  • Infections of the brain – such as syphillis, HIV/AIDS, Lyme Disease, other viruses
  • Vitamin B1 or B12 deficiency – good nutrition is imperative for brain health
  • Hypothyroidism  ( a common secondary condition that can be acquired after head injury and often undertreated; some can be hereditary and if left untreated can exacerbate symptoms)
  • Kidney or Liver disorders
  • Dementia/Alzheimer’s  (may be acquired secondary to brain injury, inherited, or from other unknown processes)
  • Emotional Disorders – stress, anxiety or depression can cause forgetfulness, confusion, difficulty concentrating and other problems that interrupt the ability to function in daily life)
  • Alcoholism, smoking, or drug use
  • Sleep Deprivation – quantity and quality of sleep affect our memory processing

Here are 12 ways that may help you manage your memory loss in a more functional way, helping to maintain as much dignity and independence as possible.

  1. Make a memory board (with important names and frequently used phone whiteboard2numbers).  Hang somewhere visible, so it can be seen and utilized daily.  Update the same day weekly or as schedules change.
  2. Create a life story book, photo album or something digital that is labeled to help identify who and what is important to remember (people, places, experiences).  Get assistance to from someone you trust (such as a family member or professional) to do this. This can include pictures, question and answer format, or whatever works for your particular needs. This serves as a dual purpose as well, as it can also be used by professionals or caregivers to understand more about you as well.
  3. Cognitive stimulation. This involves activities and exercises that stimulate thinking, concentration, communication and memory. braingamesgenderUtilizing brain exercise sites such as  Lumosity , Constant Therapy, and CogniFit Brain Training; play strategy games (like cards, checkers, chess, crossword puzzles, word finds, puzzles); coloring, drawing, or listening to different types of music.
  4. Utilize a reminder system (this may include calendar, white boards, chart on the wall).  It could be color coded as well (so a different color for each person or different color for each appointment on schedule – just make sure you use same color each time you do the schedule). Using A Planner or a Calendar App? –  write down things right away – without exception. Always keep the planner with you wherever you go.  If you get a call about an appointment, write it down IN THE PLANNER.planner  If something changes in the schedule, write it down IN THE PLANNER.  Label cupboards and storage containers as a reminder of where things are kept; label doors as a reminder of which room is which.
  5. LISTS are your friends and great reminders (note: if you have trouble writing, use a voice recorder or dictaphone to make lists).  Consider making permanent signs – even having them laminated, to remind you of things you need to do regularly (for example – sign by the sink reminding you to wash your hands before cooking or before leaving the bathroom).  Make a list for things you are running out of and leave attached to the refrigerator door (this is a great way to make a grocery list you take to the store with you).  Make a list of what bills are due on what days and how much each bill is that is due, along with how it is paid.  Make a list of daily tasks that need accomplished.  Make (or have someone make) a checklist to hang by the front door that includes what you need when you leave (for example: purse/wallet, phone, phone charger, planner, meds, bottle of water, keys, sunglasses, ear plugs, jacket, etc).  Use the checklist EVERY TIME before you walk out the door.  This reduces chances of forgetting things.
  6. stickynotesUse post-it/sticky notes. You can use them anywhere in your home or personal workspace to remind you to do specific tasks (such as a sticky on a library book that has to be returned by a certain date, or start load of laundry today, etc).Once you have completed the task, it’s important to throw the post-it/sticky note away. This way you won’t accidentally redo what you already finished.
  7. Use a mobile smartphone (cell phone). Many mobile phones have a built-in voice recorder. Use this  to record information that you need to remember or add items to your virtual calendar. You could also leave recorded notes, play it back later, or review those notes at the same time each day.  Also cell phones are great resources for text reminders, checking emails, and having access to a GPS (such as Google maps) to utilize to keep from getting lost. Use your phone to take picture of your whiteboard schedule that week so when you leave home you can look at the picture even if you aren’t at home to see it.  Use an app to record incoming/outgoing phone calls (check your State or Country laws first though, about recording these in your particular location).
  8. Medicine/Pill reminder box.  This will help you see whether you have taken your medications for that day (this helps to prevent taking your medications more than once). Some models have am/pm, and other times of the day; pillboxsome can be set to remind you when to take your pills, with an alarm, vibration or flashing light.
  9. Use an alarm clock, a watch with an alarm, or a kitchen timer to remind you when you need to leave the house for an ­appointment, or when you have to check something cooking in the oven. Write down why you have set the alarm – so you know why it is ­going off. (I cannot tell you the number of times I have had an alarm going off and then sat there wondering why I set it. So notes are very helpful – put by the alarm)
  10. Never leave the room when you are cooking.  You may forget what you were doing and this increases risk of burning your food, burning up a pan, or causing a fire.  Never leave the room when water is running in a sink or bathtub. You may forget about it and cause a flood.
  11. Appointments and Meetings. In advance, make a detailed list of what you want to say, questions you have, agenda for meeting, etc.  If you are going to a medical appointment, bring a pre-typed list to leave with the provider of all other providers/specialists (make sure this includes their addresses, phone numbers or contact informatioLeadership with educationn), all medications and their dosages (remember to list any herbs, supplements taking), and list of concerns. Record meetings or appointments to go back and listen to later and take notes from the recording.
  12. Don’t procrastinate. Whenever possible, doing things when they’re on your mind rather than later so you don’t have to worry about forgetting them. Try to utilize the same routine every day as much as possible.  Routine reduces chances of forgetting.