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

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.

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

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:

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.

Blog and Updates

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See guest articles posted on our Blog

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!!!

Our Newest HOPEster – Stephen Bristow – Survivor

Let us introduce you to Stephen Bristow. He is from Michigan and has a unique story of how the system sometimes fails it’s children. This story also drives home the importance of adequate services and interventions that are both compassionate, ongoing, and swift; a stark reminder of just how far we have come with the treatment of Brain Injury over the years, and how much further we have yet to go.

“I was young about five years old or younger when I sustained my first traumatic brain injury. This was caused by my father. He was very abusive. He was also a Navy man. The second traumatic brain injury I recall happening around 7 or 8 years old, and had something to do with baseball The one titled “mother” was not around most of the time. When she was, she was also abusive, and I sustained many beatings from her. She was employed at a Utility service…….”

STEPHEN BRISTOW STORY HERE

Our Newest HOPEster – Laura, Survivor

Check Out Our Newest HOPEster

This is what an invisible injury looks like.

The term “traumatic brain injury” wasn’t something I ever thought too much about pre-accident. It was something that happened to people in stories in the news, it was something that happened to people in the movies. It never occurred that it was something that could happen to me. And then it did. ----

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:

readmorearrow

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.

click-here-button

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

No-Fault Invitation

Ya’ll have seen and heard me talk about Auto no-fault a lot over the years. You have heard how I have embraced self-advocacy on my own behalf and encouraging such with others as well. 

Some changes were made to the Michigan Auto No-Fault laws that have hurt the protective measures that No-Fault owes its recipients. It has been disastrous and is literally costing lives.

Check out C-Pan (Coalition Protecting Auto No-fault) and Michigan Auto Law for more information and the various changes.

However, not all HOPE is lost just yet.

THOUGHTS?

Here’s an idea to bring awareness to Michigan No-Fault Laws/Changes, an invitation to all Senators, lawmakers, and our Governor to “Have A Heart”.

Each legislator who has voting power on the No-Fault issue, spend one week. Just one…..with a catastrophically injured patient and their family. They have to be a caregiver for that week, working with family or nurse supervising direct care..

Then let’s see how they think at the end. I think before pushing paper and making decisions from behind a desk that impacts so many lives….they should be required to live it in some way and make it work by their own effort and examine what they are expecting (56 hours limit being suggested for example) before making laws for it.

It’s easy to judge if you aren’t living it every moment of every day.

We could call it OPERATION: “Have A Heart”

#haveaheart #wecantwait

Here are suggested parameters:

  1. Live with family in their home for 7 days. 24/7 (live there, sleep there, be available all 24 hours – regardless of activity involved in at the time)
  2. Provide direct care to patient along with caregiver (regular or fill-incaregiver, or at direction of family)
  3. No personal tablets, laptop computers, other electronic devices allowed to be brought into home. No use of phones during care time.
  4. No refusing to do any care needed (due to discomfort, grossness, lack of knowledge, or fear of messing up).
  5. No mistreatment, verbal abuse, or physical abuse of patient or family.
  6. No help from anyone outside of what family has immediate access to without you there (no assistants, runners, interns, etc)
  7. No buying or purchasing anything for yourself (including food or drinks) or the family until after 7 days are completed. They eat and drink what family does on their budget.

Join us at the “We Can’t Wait” Facebook Group

Survivors with Disabilities

Support House Bill 4486 and Senate Bill 314

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

How You Can Help As a HOPEster

You may be asking yourself how you can help. How can you make an impact to continue to bring awareness and support self-advocacy? How can you become a HOPEster?

Maybe you don’t have a Brain Injury and have never experienced a Polytrauma. Maybe you came upon this Website while searching for something else. Perhaps you are curious about the content, or know someone who has had a Concussion, Brain Injury or a disability.

Whether you are here accidentally or purposefully we hope you have found information and resources in this Site that have been helpful, useful, or educational to you. If this page is your first stop – please explore the rest of our pages as we offer a lot of value for your visit. We provide all these services for FREE to the community at large.

Maybe you are a survivor, a caregiver, a healthcare provider who understands all to well the content here and could even add to the stories here with your own.

If you would like to offer HOPE (Help One Person Excel) by:

Giving a gift to keep this site running and helping its services remain FREE

Help us continue to bring awareness; or just support the cause

BECOME A HOPESTER

Check out our page HOW YOU CAN HELP

Introducing HOPE TBI Podcast

We are thrilled to announce another way of bringing support to you, and awareness to brain injury and polytrauma. We are pleased to introduce you to our Podcasts.

If you couldn’t get enough of the HOPE TBI website, Blog, or Support Groups… you are going to love listening to our Podcasts.

If you are someone that has difficulty reading, or is on the go and no time to peruse web pages, you are going to love the convenience of listening to our Podcasts.

If you are new to HOPE TBI, then welcome. We have a lot of support to offer you through our many FREE services.

Please remember to leave a Testimonial to give us feedback. Do you like what you hear? Are you getting value from the content? What impact has HOPE TBI made in your life. We want to know.

Listen Here: HOPE TBI – PODCASTS

Our Podcast is available on Anchor by Spotify, Spotify, Breaker, Google Podcasts, Pocket Casts, and Radio Public

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.

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!!!

That Mother

I just want to say to all you Mothers’s, Step-mothers, Foster Mom’s, and Guardians fulfilling a role as a “mother” figure…..

I see you.

I see your love, your sacrifice, your devotion, your fierce advocacy, your struggle, your effort, your laughter, your tears, your disappointment, your celebrations, your resentment, your anger, your amazement, your exhaustion, your selflessness, and your commitment.


I just want to say to all you Mother’s, Step-mothers, Foster Mom’s, and Guardians fulfilling a role as a “mother” figure….

I hear you.

I hear your cheers, your jeers, your concerns, your focused topics, your questions, your accolades, your encouragements, your motivational speeches, your yelling, your frustration, your grief, your joy, your coaching, your mediation, your compassion, and your ongoing effort at communication.


I just want to say to all you Mother’s, Step-mothers, Foster Mom’s, and Guardians fulfilling a role as a “mother” figure….

Just Be You.

Be the best version of yourself each day, be that disheveled mess, be that organized detailed version of yourself, be true to your values, be that parent that can admit their mistakes, be that parent that lives by example, be a stay at home parent, be a working parent, be a disabled parent, be a retired parent, be scattered, be focused, be hard to understand, be easy to get along with, be the parent that lacks humor, or be the parent that can make your child laugh. Just be YOU.


You are who your child(ren) will remember long after they have grown and you are their influencers for good or evil, love or hate, bravery or fear, joy or sadness, loved or abandoned, condemned or celebrated. You are the beginning of their imprint on the world.


Thank you for being just who you are and adding to the fabric of our world with your ability to be THAT MOTHER.


Happy Mother’s Day!


~Written by Caren Robinson 2021

HOPEster Movement

Join the HOPEster Movement!

Are you passionate, idealistic, and believe in the inherent goodness of others and our collective responsibility to each other as human beings?

Then you are a HOPE’ster!

https://www.facebook.com/groups/hopester/

#HOPEster #hope_tbi #ImaHOPEster

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

Transition Ability

Let’s start your journey. Contact me for a FREE 30 Minute Life Coaching Consultation.

Sometimes its the journey that teaches you a lot about your destination ~Drake

If you can’t fly, then run; If you can’t run, then walk; If you can’t walk, then crawl; but by all means, keep moving.
~ Martin Luther King Jr.

#vitalabilityllc #transitions #ability #hope_tbi #lifecoach #trauma #braininjury #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:

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.

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.

Reviews and Testimonials

Hello HOPEster’s,

I wanted to reach out and share our latest and greatest page with all of you.  It is our Reviews and Testimonials page.

If you are seeing this message in your email you have subscribed to our email notification list.  That means you care enough about our content to want to be notified when we post something new.

If you are coming on this Blog post by scanning our Site, please take time to also leave your review and feedback after exploring a bit.

We would be thrilled and grateful if you would take a few moments to type up a review or feedback about our website and submit it in the comment section of our new page.

You can reach our page here:

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

.

reviewstestimonials

Awareness Matters – Rock the Vote!!!

Okay….as an advocate for patients with brain injuries and those going through transitions in their life….part of that advocacy and role of consulting is being authentic and realistic as well. While I have compassion for what Biden is going through health-wise….I also must be pragmatic and realistic about what we as a Country are watching and a lot of America is missing.

We are watching in Biden a man struggling with brain changes that make him inept for the role of President of the United States. He is losing time, memory, has numerous bouts of aphasia and an obvious onset of what appears to be dementia. While he may go on to live many more years and contribute to society in other ways……the decline is palpable and not representative of what our Country needs or requires of a Commander -in-Chief.

Biden is NOT someone that should be in a role that requires strong mental faculties to run this Country…..he absolutely can not win against Trump or any other Republican candidate for that matter.

Bernie is our only hope at this point to have a fair, constructive, and challenging election in November. It won’t be a challenge if the DNC foolishly allows Biden to continue on. Biden will lose and should lose as he is just as dangerous for our Country as is Trump.

I hope Bernie pulls out a win to face off against Trump. I hope there is not a Baker convention that picks someone less qualified or not even in the running…as the Superdelegates would surely do….

We are facing a historical and pivotal shift in our Country and have been for quite sone time I only hope it shifts in the way that saves our Country and its democracy….not destroys it.

Please make your voice heard…VOTE!!!

https://youtu.be/jXtm1or9tjo

Love, Sex, and TBI – Beyond the Chocolates

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Come and Listen to our recorded Radio Show called Recovery Now with Kim Justus and Caren Robinson as we talk about Love, Sex, and TBI – Beyond the Chocolates.

We would love your feedback.  Feel free to share the link and start a dialogue.

https://www.blogtalkradio.com/braininjuryradio/2020/02/13/love-sex-and-tbi-beyond-the-chocolates-on-recovery-now-with-kim-caren

 

Sex Therapists, Counselors, and Educators

https://www.aasect.org/referral-directory

 

Sex and Disability Furniture and Alternative Assistive Devices

https://www.morethansextoys.com/pages/pleasure-able-sex-and-disabilities

https://www.intimaterider.com/

https://yourkinkyfriends.com/2018/07/04/sex-toys-and-furniture-for-people-who-live-with-disabilities/

No Glove No Love – Safe Sex After Brain Injury

sexbrain

Sex and Disability

Sexuality is one of the most complex aspects of life but, the sexual lives of people with disabilities have been disregarded and stigmatized. As a result, sexuality as a form of pleasure and an expression of love is not taken into account or even recognized for individuals with disabilities.

Sexual expression is influenced by cognitive and emotional processes and is dependent on functioning anatomical and physiological systems, in other words, our brains control our sexual organs and responses.

Before resuming sex with a partner, boyfriend, girlfriend or spouse, talk about it with your doctor or therapist and be guided by their advice.  Make sure you are clear and talk with your mate about your expectations, fears and feelings, including consent. Communication is key! Remember to not put too much pressure on yourself, focus on pleasure and not technique. You may need to change your same old lovemaking style and experiment with other sexual activities which can include

  • oral sex and mutual masturbation
  • utilization of sexual aids/toys/furniture
  • to increase intimacy, concentrate on boosting the romance in your relationship by offering lots of affection, complementing and saying nice things to each other and celebrating big and small occasions.

Importance of safe sex

After a TBI, it is just as important for you to protect yourself from unplanned pregnancy and from sexually transmitted disease as it was before your injury. Even if a woman’s period has not returned, she can still get pregnant. Here are some tips to help with birth control and protection from sexually transmitted disease.

  • Do research to help figure out what method of birth control and protection from sexually transmitted disease are best for you.
  • Because of changes in thinking abilities, it may be harder for you to remember to use protection or to remember to take it with you.
    • You can plan ahead by always carrying a condom or other method of protecting yourself and your partner.
    • For women who use birth control pills, or a device that must be replaced, using a calendar or alarm on a smart phone can help you remember to take the pills or change the device.
  • If you are unsure whether your partner has a sexually transmitted disease or has been intimate with others who have such disease, it is safest to use a condom.
  • If you have engaged in any risky sexual behavior, one of the best things you can do for yourself is to get tested for sexually transmitted diseases and get treated if you test positive.

Consent should not be assumed

Each of us is responsible for making sure we have consent in every sexual situation. If you are unsure, it is important to clarify what your partner feels about the sexual situation before initiating or continuing the sexual activity. Consent should not simply be assumed by:

  • Body language, Appearance, or Non-Verbal Communication: One should never assume by the way a person dresses, smiles, looks or acts, that they to have sex with you.
  • Dating relationships or previous sexual activity: Simply because two or more people are dating or have had sex in the past does not mean that they are consenting to have sex with you.
  • Marriage: Even in marriage, a person should not assume they have consent for sexual activity. Marital rape is as serious as any other sexual assault.
  • Previous Activity: Consent to engage in one sexual activity at one time is not consent to engage in a different sexual activity or to engage in the same sexual activity on a later occasion.
  • Silence, Passivity, Lack of Resistance, or immobility: A person’s silence should not be considered consent. A person who does not respond to attempts to engage in sexual activity, even if they do not verbally say no or resist physically, is not clearly agreeing to sexual activity.
  • Incapacitation: Alcohol consumption or use of other drugs can render a person incapable of giving consent. Alcohol is often used as a weapon to target individuals and is used by perpetrators to excuse their own actions.  Additionally, Michigan Criminal Sexual Conduct laws apply to a perpetrator regardless of whether or not they were drinking. It is important to remember that sexual assault is never the survivor’s fault, regardless of whether they may have been intoxicated.

The term “sexual assault” means any unwanted, nonconsensual sexual contact of any kind (including kissing) obtained through the use of force, threat of
force, intimidation, or coercion.

Rape is unwanted, non-consensual sexual contact that includes penetration (i.e. vaginal or anal penetration, oral sex, and genital touching) obtained through the use of force, threat of force, intimidation, or coercion. 18% of all rapes and sexual assaults are reported to be committed by strangers, which means that most of these crimes are committed by someone the victim knows, is close with or related to (according to the 2017 Bureau of Justice’s).

Myths About Disability and Sex

  • Disabled people can’t have sex.
  • Disabled people have to pay for sex.
  • Disabled people aren’t sexy. 
  • Disabled people don’t want or need sex
  • Disabled people only have kinky sex
  • Disabled people can’t have sex
  • Disabled people only have sex with other disabled people
  • Disabled people can’t have kids
  • Disabled people shouldn’t have kids because they can pass on their disability
  • If you have sex with a disabled person you will catch what they’ve got
  • Disabled people are a burden on their partners
  • People living with a disability can’t have “real” sex
  • Disabled people need protection, like kids
  • Disabled people have more important things than sex to worry about
  • Disabled people are brave and courageous to try sex (no, it’s just adapting to a lifestyle)
  • All persons in wheelchairs are chronically ill, frail, or sickly

Facts About Disability and Sex

  • People with disabilities can be sexual and enjoy sex
  • Some people who use a wheelchair can still feel “down there”
  • Sex is not just all about each others “privates”, it’s about intimacy as well
  • Mobility aids can be a fun addition
  • People with a physical disability don’t just “lie there”
  • Disabled people can have sex and enjoy it
  • Disabled people sometimes choose to pay for sex like people who aren’t disabled
  • Disabled people are sexy
  • Disabled people can have sexual desires/needs
  • Disabled people can have kids and build families of their own
  • People with disabilities can identify as LGBTQ too
  • All people need to learn about and understand sex
Also check out our web page called Sex After Brain Injury and Trauma

disabilityandsex

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.

Open Letter – Mr. President

Open Letter to the President of the United States of America.

1/24/2020

Dear Mr. President,

Your role as a leader of the free world is the most important in the Republic, in ours….these United States and all her territories. Your role affords you the ability to maintain influence, direction, opinions, and historical precedence through each of your spoken words, deeds, and continued representation of various topics.

While I understand you are not a medical professional, nor have received any form of medical training Mr. President…you only need do a simple internet search on an internet browser of your choosing…. to read about the extensive life changing effects of Traumatic Brain Injury.

These medical facts are documented by a multitude of research/studies, medical professionals/experts, well respected organizations, survivors, and our very own Military.

Please understand, how recently, you painted an illustrative picture to the world about your seemingly misguided and uninformed statement about the lack of seriousness brain injuries cause.

Mr. President the potential life changing affects of Brain Injuries (also called Concussions by those not aware of the proper updated terminology) are VERY SERIOUS.

I was listening to your statements of ……..

[Mr. President] “No, I heard that they had headaches, and a couple of other things, but I would say, and I can report, it’s not very serious,”

[reporter asks] “So you don’t consider potential traumatic brain injury serious?”

[Mr. President] “They told me about it numerous days later, you’d have to ask Department of Defense, “I don’t consider them very serious injuries relative to other injuries that I’ve seen.”

“I’ve seen what Iran has done with their roadside bombs to our troops. I’ve seen people with no legs and with no arms. I’ve seen people that were horribly, horribly injured in that area, that war,” Trump said.

“No, I do not consider that to be bad injuries, no,”

Mr. President, I feel it imperative to provide you with the proper information on the campaign to bring global awareness to the effects of Brain Injuries. Awareness that even the White House seems to be in much need of….. so as to represent the dire importance of presenting the consequences accurately to the masses.

The effects of Brain Injuries can be long lasting or even permanent. While recovery and rehabilitation are possible, most people with brain injuries will face life challenges that will require them to adapt and adjust to a new reality where permanent physical or mental disability, and sometimes even death are the very real SERIOUS EFFECTS of their lives after sustaining that injury (or series of injuries). Even patients who appear to fully recover after treatment and rehabilitation may have some long-term symptoms that never go away or fully resolve. These changes may cause an inability to return to their life in the same capacity that they had before their injury.

Indeed Mr. President, injuries to the body, whether visible or not visible, can be equally life changing.

The statement you gave was partially correct in as one of the many symptoms of brain injury does include “headache”…..however there is so much more.

SOME of the other changes other than headaches include an alteration in:

physical realm (sleep, hormonal, neurological, balance, nervous system, endocrine system, appetite, fatigue, etc);

an alteration in cognitive processes ( memory issues, distractability, impulsiveness, mood disorders, language, mental processing time, confusion, etc);

an alteration of senses (sight, vision, phtophobia, double vision, smell, taste, hearing, tinnitus (ringing in ears): aphasia (difficulty with talking or expressing ideas, understanding everyday language, and problems with reading and writing),

and development of PTS (post traumatic stress) and PTSD (post traumatic stress disorder) can also be present along with, or secondary to, the brain inury or polytrauma event(s).

[not an exhaustive list by any means]

Mr. President, despite the amazing advances in medicine, research by scientists, and active steps taken to develop treatment plans by our own Military; there are still more discoveries to be made and more work to be done.

Devotion of time and much needed funds, resources, and bipartisan support is still necessary to bring awareness and education about brain injuries to the forefront by not only you, but our other Leaders in our Government, private, and public sectors .

We must recognize this as a valuable opportunity to address this as what it actually is….a call to action about this – an International medical crisis.

We must figure out how best to treat those with Brain injuries, help them live their best lives, and be open to various methodologies and alternative sources of therapies that are allowed and covered by our insurance companies as to support the best outcomes.

Mr. President, you must know as soon as possible that despite early diagnosis and treatment of Brain Injuries, the fact remains that brain injury will be a life-changing experience for many patients.

So….in a word Sir….S E R I O U S !

HOPE for Life,
Caren Robinson – United States Citizen
Polytrauma and Brain Injury Survivor

https://www.cnn.com/2020/01/22/politics/trump-us-service-members-traumatic-brain-injuries/index.html?utm_source=fbCNN&utm_content=2020-01-22T14%3A40%3A11&utm_term=link&utm_medium=social

Happy New Year HOPE’sters

Here’s hoping all our fellow HOPE’sters had a Merry Christmas and Happy Holidays.

We would like to wish you a Happy New Year with 2020 vision of great things yet to come.

Never give up HOPE, and never be afraid to be who you are meant to be. Don’t be afraid to be who you are!

The Cost of Social Trauma vs. Personal Trauma

braininjuryradiobanner
I had the opportunity to co-host an online radio show LIVE.
 
We discussed “The Cost of Trauma on Recovery Now”.  We were covering the cost Social Trauma vs Individual Trauma and shared a dialogue about our views and defining of terms regarding Trauma.
 
Something we didn’t have an opportunity to cover is the generational movement of folks not wanting to have kids at all or build their own families due to the potential exposure to Trauma, violence, or the eroding of society, our humanity, and the environment as a whole and how the current Trauma’s and experiences in our societies are impacting the future of humanity.  It is imperative that as a collective consciousness we develop and implement ways to reduce, recover , and or eradicate as much Trauma as possible.
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Please take an opportunity to share the link with those you feel will benefit from this topic.  
Feel free to click on the link yourself as well and listen to the show.

 

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Brain Injury Radio – Caren Robinson

braininjurytalkradio

Well I did something magnanimous this past Wednesday evening.  I had received an invitation to be interviewed on Brain Injury Radio by Kim Justus.

I took the plunge, and embraced the opportunity to share some of my experiences over the course of the last 5 years in regards to bringing awareness to Polytrauma and Traumatic Brain Injury on a International Radio Show.  How exciting to be a part of something so deeply personal, meaningful, and far reaching.

Check it out…take a listen and leave a comment below.  Let me know if there was anything on there you could relate to.  Feel free to share this link with anyone you think would benefit from hearing its content. I’d love to get your feedback!!!

* Brain Injury Radio Interview – HERE * 

Some of the resources mentioned on the show were the following:

Audiology testing, SpectCT Scan, Medical Acupuncture, alternative Medicine, cognitive fatigue (neurofatigue), among other things….and the mentioning of the following groups:

Pink Concussions

Cerescan

Toastmasters International

~Caren Robinson

 

Reflection of Motherhood

reflectionofmotherhood

Being a mother has been the best job in the world to me.  I always wanted to be a mother…from a very young age.  I felt capable, ready, and committed to being the best mom possible.  I wanted to be, and often was, the supermom, who could seemingly do a little bit of everything at a moment’s notice.  Then the wreck I was in changed all of that forever.  It shook my confidence.  It shook how I existed from one breath to the next; it shook every aspect of my life as a daughter, sister, wife and as a mother.

I have been a mother to foster children, stepchildren and biological children. I have been a mother figure to kids that never even lived with me. I  have been mothering to kids I came into contact with. I am convinced that how we care for, love, and embrace our children is exactly what makes us a mother, no matter how those children came into our lives, or became our own.

After the polytrauma and traumatic brain injury, I was no longer the mother my children knew before that day.  I was different.  I didn’t even know who I was. I was injured, I was in pain and I was unavailable emotionally, mentally, and physically.  I have heard stories about things I don’t remember – things I have allegedly said or done, most humorous, some horrible and embarrassing.  I apparently was a horrible person sometimes, especially in the first year after the wreck.  This was just bad mojo – cognitive changes, personality changes, and enormous pain from all my injuries.  I was often in so much pain I couldn’t function at all.  I was useless to everyone around me.  I definitely couldn’t make effective and meaningful decisions.   I couldn’t remember one day to the next or who had visited me, or what was said by whom.  I couldn’t muster taking care of anyone else, let alone myself.

My outlook on everything, while hopeful, was also littered with confusion and a myriad of emotions I didn’t seem to be able to control.   I noticed my mood was worse as the pain increased and for a long time just breathing or moving caused me pain.  I slept A LOT.  I couldn’t even force myself to stay awake.  I wasn’t the mother I had always been.  I was the mother fighting for life and fighting to come back to my family.  I was a mother still inside, still to my children, still to the world who knew me as their mother.  Yet I wasn’t at the same time.

My own mother took care of me.  She bathed me, clothed me, fed me.  My mother was there for my first steps as an infant and again as an adult as I learned to walk all over again.  My mother was my caregiver.  She didn’t have time to grieve.  She became the needed mother role for my children.  My husband and my mom were my pillars of care and support.  I was fortunate to have such amazing support.  Not everyone has a supportive system like that.  Some days my mom was more of a mother to her grandchildren for a period of time than I was….than I was capable of being.  I don’t like to dwell on that.  I don’t like that this was her reality – however I am enormously grateful.

I realize that being a mother is an enormously different experience for every woman who ventures down that path, and the experience is different with each of our children as well.  I am acutely aware of this.  Not every woman wants or enjoys being a mother.  Some mothers are not mothering at all.  Some women abuse or neglect their children.  Some women wish they never had children. Some are the opposite however and actively involved, readily available, completely vested, and doting.

My job as a mother is constant.  Being a mother is a full time endeavor and is totally consuming, no matter how old your children are, or how many you have.  No matter how old, how broken, or how healed you are as that mother.  A mother sometimes  worries for her children.  A good mother desires to see her children succeed.  It is frustrating and depressing when you go from full time, full speed ahead in parenting and life to an abrupt halt due to an injury that doesn’t even allow you to participate part time…if at all on some days.

Learning to embrace the new normal after catastrophic injuries is no easy feat.  Most days it seemed impossible and almost always overwhelming.  You would be amazed at how much the love of being a mother motivated me to give my best effort each day.  Some days, literally the only reason I found myself able to face the day was because I knew my children needed me, were counting on me, and were hoping for my recovery.  So in that regard, the kids helped save my life.  They helped me stay motivated just by existing.

Some days are challenging still, though much better than in those first few years.  Did you know that any women who are mothers take on additional caregiving for loved ones with disabilities or long-term care needs, beyond the work that we normally do to raise children or to fight through their own rehabilitation?  This became the case for me when my mom developed encephalopathy and a resulting ABI (an acquired brain injury) secondary to being diagnosed with Anca Vasculitis. I then also absorbed some of the role as her caregiver.  Signing documents in the hospital for procedures and care she needed when she was unable to do so for herself.  I took on the role of caregiver and I wasn’t even ready to be back in my full role as a mother to my own children.  That was a series of difficult transitions……for all of us. Yet we persevered.  Survival was inevitable.

Did you know that the CDC reports that the average life expectancy for women is 81? Living to the age of 81 is nearly four years more than that of men. In fact, many women outlive their husbands. Some even outlive their retirement. Even those on disability. Older, single women face significant challenges in managing their own long-term care needs as well.  If you add the extra job of being a mother to all that mix – you learn a lot very fast and you shoulder a LOT of responsibilities.

To be the best mom possible, I realized it was imperative for me to not just let go and let God;  but to let go and let others.  Let others help me, let others give rides to my kids, help my kids, help my family.  Let my husband take on those responsibilities I had as a mom, that I sometimes didn’t have the energy to be present for.

I realized that being a supermom didn’t mean I had to do it all.  Being a supermom meant I just had to be here to the best of my ability, to love my kids to the utmost, to voice my tolerances and intolerances in a different way.  Being a supermom meant giving myself the freedom to recover at my own pace, and forgiving myself for not being who I used to be.  Being a supermom meant being the best me I could be in each moment.

I still love being a mom.  I still love hearing the laughter of my children.  I love watching them sleep, hearing them play, and watching them grow.  I still value being involved, present, all while being respectful of my limitations.

I am still a supermom.  I just do it differently. Do you know a mom who is recovering from an injury….who is a caregiver….who is employed…..who is unemployed….who is on disability…..has her own children….or is a mother figure to the children of others….offer to help her out.  Can you think of that mom out there who is struggling to do her best? ….Offer to shoulder some of her responsibilities.  Appreciate her.  Celebrate her as an invaluable contribution to the family as a whole.   After all, that is what she is – invaluable.

Is that mother you?  Ask for help.  Love yourself.  Forgive yourself for not doing or being all that you envision all at once, or still. Get involved in a support group, counseling, whatever it takes to help you face each new day and each new moment.  You are after all….if you love being a mom….if you are go getter, a survivor, a brave face in a sea of thousands.  If you are a mother giving her best effort….even if you aren’t able to do everything….you are still a super mom.

Happy Mother’s Day

~Caren Robinson – May 2019

 

Below are some articles and links I thought would be helpful to all those who have mothers, are mothers, are children of a mother with special needs, or are caregivers for mothers…..

Parenting After Brain Injury – A Guide

https://www.headway.org.uk/media/3998/parenting-after-brain-injury-e-booklet.pdf

How Motherhood Makes You Smarter

https://www.smithsonianmag.com/innovation/how-motherhood-makes-you-smarter-55995649/

The effect of parental traumatic brain injury on parenting and child behavior.

https://www.ncbi.nlm.nih.gov/pubmed/9885318

 

When Parents Have Brain Injuries: Helping Children Cope

http://www.muhcpatienteducation.ca/DATA/GUIDE/532_en~v~when-parents-have-head-injuries-helping-children-cope.pdf

 

Adult functioning of mothers with traumatic brain injury at high risk of child abuse: a pilot study.

https://www.ncbi.nlm.nih.gov/pubmed/24401827

Children with Traumatic Brain Injury: Associations Between Parenting and Social Adjustment

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4695398/

Children of a parent with brain injury

https://www.braininjury-explanation.com/life-with-brain-injury/consequences-for-the-family/children-of-a-parent-with-brain-injury

Finding My Mom Again After Her Brain Injury

https://www.scarymommy.com/finding-my-mom-again-after-brain-injury/

 

TBI Ten Years Later: A Mother’s Story Continues

https://www.brainline.org/story/tbi-ten-years-later-mothers-story-continues

This Mother’s Day, know the symptoms of concussion

http://theconversation.com/this-mothers-day-know-the-symptoms-of-concussion-96101

 

How Treating People With Brain Injuries Helped Me Forgive My Mother

https://narratively.com/how-treating-people-with-brain-injuries-helped-me-forgive-my-mother/

Improve Awareness and Understanding of Brain Injury

The Elephant In The Room

Elephant In The Room:

~ An English-language metaphorical idiom for an obvious problem. difficult situation/decision, or risk no one wants to discuss, or a condition no one wants to challenge.  An unpleasant experience. question, problem, solution, or controversial issue which is obvious to everyone who knows about the issue, but which is deliberately ignored because to do otherwise would cause great embarrassment, sadness, arguments, or is simply taboo. ~

orangeelephant

What is YOUR “elephant in the room”?   

Is it an invisible injury or illness? Have you been diagnosed with a Traumatic Brain Injury?

Is it a Polytrauma you are recovering from?

Is it chronic pain?

Is it Survivor guilt?

Is it lack of sexual libido or change in your sexuality since your injury/illness?

Is it your inability to describe to others what you are going through or have gone through?

Is it the coping skills that you must use and choose to tell noone about?

Is it your bravery, your sheepishness, your courage, your fears?

Is it pride in how much you have acccomplished?  How far you have come?

Is it depression, anxiety, or disappointment in your lack of progress?

Is it lack of confidence?  Is it overthinking and overconfidence?

Is it your inability to return to the same type of work you used to do?

Is it your desire to return to work, yet unsure of what that picture looks like for you?

Is it caregiver burnout?

Is it provider fatigue?

Is it a source of deep grief, sense of loss, or mourning?

Is it something that you have put in your past and no longer wish to speak about? 

Is it something you want to speak about, yet others are ready to move on and not speak about it?

Talking about the things that are bothering you can help clarify them and put them in perspective. In never addressing the “elephant in the room” a general uneasiness, sense of frustration, stagnation, loneliness, and untrustworthy environment can breed a life of havoc and confusion. Break your silence and be blunt in a productive manner.  Perhaps even seeking out a therapist to assist you with working through some of the adjustments would be advantageous for you.

Avoiding an issue causes more harm than good….always. When discussing an issue, it is imperative to remain as calm as possible.  Using anger or yelling to communicate can absolutely make things less constructive – especially if you are having trouble finding the words to say and the best way to deliver them.  Being objective can be super tough.  However, it can be helpful if you make a list of facts.  Now, when I say facts.  I am not speaking about how you feel, how you think, or what your assumptions are.  I am talking about facts that you can prove with empirical evidence, historical evidence, and a paper trail.

elephantagitationKeep in mind when talking about that “elephant in the room” that sometimes the very people who need to hear the topic being talked about are the least receptive to hearing it.  That often means that person might even be you.  Being receptive to talk is important. It is equally as important to actively listen. Support from others that share the same or differing opinions about the issues you wish to speak about will make it not about you, but about the issue and how much it impacts others who have gone through the same thing, or are currently experiencing the same challenges.  Support groups (even if they are online) can be an amazing source of support, ideas, and encouragement.

A resolution or plan is something that is accomplished over time. Open communication without apathy,  fear, or hopelessness is an integral part of finding what works best for you. Keep an open mind and be willing to have multiple conversations about that “elephant in the room”.

Taking that challenge which is deliberately ignored and opening up a dialogue about it, changing whatever it is that is holding you back from being your best self.  This is how to make progress, step outside your comfort zones, and switch an unspoken taboo topic into a healing process.

purple elephant

Journey Into the Dark Side

I have been reflecting.  Reviewing old notes, writings, posts from the first 3 years after the wreck.  This was the epicenter of the hardest of my recovery.  Also the hardest was not feeling listened to by certain providers, especially during that first year; these providers who dismissed my pain, and who I was supposed to be trusting with my care.

I have decided to share some of those thoughts here….in my Blog.  This one was from 2014 just after the first of several surgeries to come:

The Journey Into the Dark Side

I remember.   I remember going to Spectrum Health Butterworth for surgery. I remember the surgeon calling me the night before after weeks of trying to get a hold of him to quash my fears and answer the questions, which to him were probably nonsense….but to me – were the words that drove my every waking breath and desire to understand what I was about to endure.

I needed his reassurance.  His candidness.  His time. His empathy.  His patience and his understanding.  I needed his apology, which I doubt I will ever hear. I remember feeling frustrated and angry that he told me to call any time with questions and then never responded to those questions, leaving me hanging perilously from day to day as if I were waiting for my death sentence.

Each moment, perhaps my last with each click of the clock which hung on the wall and taunted me so consistently with each passing hour, day, and night.  To him he was probably busy, and thought I should just TRUST him because he was one of the best if not the best surgeon in his specialty/field…..but how could I trust when that trust had been shattered like the pieces that lay inside my body still broken, painful, and damaged?

That trust was broken by him when he didn’t believe me and my complaints of pain, and yet I craved his answers and solace to help me get through the coming days and weeks before that daunting day when I would go beneath his knife.  I craved his humanity and his ownership for his role in my current state.  Yet that never came.

I felt trapped.  I knew I needed the procedure….this surgery.  How could I trust once the betrayal had been sown?  How could I believe that this was the right thing to do by this same man who cast me aside like a scrap piece of paper not worthy of his time until I got beneath the glaring lights of the cold and clinical Operating Room…..where I saw him momentarily.

How could I in the face of adversity and enormously high risk of dying on the operating table….TRUST?

I took a break, several in fact, and pretended like everything was okay, for my family’s sake.  I don’t know how I made it through other than by faith, the driving and enormous desire for relief of the growing pain in my right side (where the ribs never healed) that never went away; and the increased loss of strength and use in my right arm (most likely from forcing myself through therapy for 12 weeks and putting forth my BEST EFFORT with tears flowing like endless waterfalls as I forced myself to continue each exercise…..not knowing that my shoulder/scapula was still fractured and had not healed at all either as well).

How could I push aside the rage and anger that made several professionals miss such an important detail that I was very vocal about?  How could I give in to the experience when I had so much left to say, learn, live, and experience?

I just kept breathing…..deeply, slowly, studying each item, each line in the ceiling as I was wheeled along in the stretcher.  I focused on the names of those pushing me, and their conversations and attempts to bring calm to me.  I embraced each quirk on the face of my husband, mother, and Medical Case Manager as this may be the last things I see.  I was acutely aware of every single detail and overwhelmed by the voices, noises, and conversations around me.  The lights were bright, my headache grew, and I had to take myself to another place while still being exactly where I was.  I know that sounds silly but I have no other way to explain it..

This fileting of my body with a magnificent dance of his scalpel tools and his skillful artistry beneath the clinical shroud of the operating room;  a handful of specially trained staff who would bring me to the other side of waking up once more…..or so I secretly begged for  – and perhaps begged for aloud as well.

I remember putting on my bravest face and not knowing if this was the day that I kissed my children goodbye for the last time before I saw them walk out the door to go to school;  not knowing if this was the last time that I would see my mother’s face, feel my husband’s touch, and I was so afraid.  I wasn’t afraid to die.  I just wasn’t ready.  I thought on this intensely.  Should I have written good bye letters the night before.  I had decided not to because to me that was the same as giving up.  How do I find the words to say the things that I feel? HowI do I make the words in my head come out on paper in the way I wanted them to and to have enough of an impact to make everything up to that point feel “worth it” when since the wreck I struggle just to get my words to get from my head out my mouth in the way I desire.

How do I trust God and the Universe and all my spiritual beliefs and experiences?  How do I know at this point that God is even real any more?  Then I had to remind myself of all the miracles surrounding the wreck and force myself to believe that miracles would happen that day.

As it so happened…..the 3.5 hour surgery we were told it would take turned into about 8 including the 2 hours in recovery, per my husband and mom.  The stakes were high.  The man I decided at the last minute to trust with my life in its entirety took me on a journey and he and his team brought me out the other side.

This was my first post surgical feeling of gratefulness!!! When my eyes opened and I noticed people rushing around me in recovery, and seeing my O2 sats in the 80’s but just feeling such calm, feeling peaceful, acutely becoming aware again, and just blinking ever so slowly…….grateful in that very moment.  Grateful that I had been allowed to once again survive that Journey…..

The Journey into the Dark Side.

~ Caren, 2014

carenpostsurgery

NEW STORIES – Matters of the Heart

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I am a Survivor trying to bring inspiration and awareness about Polytrauma and TBI to others.

33 Months ago, our Website Page for YOUR STORIES went LIVE.  Since then, we have met some amazing folks and had the opportunity to share their stories, experiences, and soulful expressions with all of you out there.

If you have not submitted your own story.  You can do that by starting HERE.

Survivors, Caregivers, Providers; Parents, family, or friends – share your story to be published on this site today.  We are glad to help you in any way we are capable.

We have recently finished Stories for various folks that we would like to share with you.  Take a look, read some, leave a comment at the bottom of their story if you choose, and pass the link on.

Let’s bring Global Awareness to Polytrauma and TBI
NEW SUBMISSIONS:        Murray Dunlap – Survivor
                                             Bobby Porter – Caregiver
                                        Jason Stockman – Survivor
                                             Tiffany McCullock – Survivor

SPECT CT – Diagnosing and Treatment of TBI

As Science evolves, so should the diagnosis and treatment of Traumatic Brain Injuries.

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Check out our newly added Web Page:    SPECT CT

 

This is an important second test in settings where CT or MRI are negative after a closed head injury with post-injury neurological or psychiatric symptoms.

7 Mysteries of Polytrauma Exposed

 

mysteriesbrain

  1. Hermitdom – In the beginning, not only did I NOT want to leave my house to venture out into the outside world, I often was absolutely content to remain in my bedroom where I knew what to expect and it was somewhat controlled and felt safe and comfortable. This was my safe space.  Safe from the bright sunlight, safe from too many people talking at once, safe from the general noise of the world outside the room, safe from traffic, safe from having to explain what was wrong with me, safe from having my daily emotional breakdowns in front of others, safe from trying to stay awake, safe from being looked on with judgement or pity, safe from healthcare providers appointments, safe from additional pain from moving broken limbs across the room and down the stairs to face the reality I did not seem to fit in any more.anxiety

As time progressed, as my healing progressed, as I was forced out of the room due to sheer necessity to survive my pain, to attend numerous therapies and medical appointments, and to be a parent – I began to adjust to new tolerances.  I also learned rather quickly most of what triggers to avoid so I didn’t end up in a full blown panic and puking my guts up from the dizziness, headaches, and a bouncy massively overstimulating environment.

Getting out of the house is a solid accomplishment.  There is a lot of planning that goes into getting out and about.  There are things to consider that I took for granted before the Polytrauma.  Checklists are my friend.  If I deviate from this process we have established, things do not go well at all.

Some days I do better than others.  I find I am able to be out longer and more often than even a year ago.  However, I recognize that I do not have the same comfort level I used to before the polytrauma and I value getting back home as soon as possible.  Some days I still have to force myself to leave my room or go downstairs to the main living area of our home. Some days I feel ready to face the world, get outside, something happens that I didn’t expect and NOPE…back home I go.

Trips away from home, the longer the day, the busier the activity, the longer the recovery time afterwards.  A one day trip could take several days to recover from.   A day of appointments could take a week to level out from again.  If you have back to back appointments or requirements, it becomes a vicious cycle of feeling overwhelmed, incompetent, and beyond exhausted – just weary and pummeled.

So planning in advance, if possible, become a requirement.  Having someone help you organize your schedule, your time frames, your goals is imperative to attaining those small victories.

Having things to help you cope in moments you can’t be home is imperative.

  1. Brain Time – I created this term with my family. I wanted desperately to spend time with my kids, my husband, our friends, and people in general.  I wanted desperately for things at home to be normal.  Since the polytrauma I would feel emotionally and mentally….well…..flooded.  Like I was standing in the ocean and wave after wave was hitting me in the face and taking my breath away.  In my case though, sometimes their voices all at once, their walking, their questions, their playing, their presence is enough to overwhelm me.  It is like there are too many sounds to sort out or too many thoughts to try and think at once.  I would become irritable, frustrated, nauseas, and when I wanted it to stop…. it literally had to stop NOW, or I would puke, have an emotional crying meltdown, or just freak out.  So we came to an agreement that if I said “Brain Time”  all things ceased no matter where we were.

Reset-ButtonIn the beginning  I was at the point when I couldn’t easily reset myself, so I would say “BRAIN TIME”, go in my room (or they would have to leave my room), and I would stay there until things settled down in my head.  No interruptions, no calls,  no questions, door shut. Sometimes this was moments, sometimes minutes, often hours, or occasionally days.  I needed absolute silence, a dark room, a warm heavy blanket and to lay down perfectly still.  I slept a TON.

As time has passed and I am now three and a half years out from my trauma, I still call BRAIN TIME now and again, yet it is less often that it used to be and I have employed other coping mechanisms to help me reset myself.

However, once my brain has decided it has had enough for that moment, or that day. It’s like it’s done “now” and not even I can control the shut down process.  I am learning to pace myself still and manage this more effectively.  This does not make for a great social life though, I will say that.

  1. Directional Instability – Okay I gotta say I have always been the type of person to have a pretty decent sense of direction. I never had a problem getting “lost” when I went into a building, when I drove, or when I was walking somewhere.  I was always quite proud of this “inner compass” and it served me well in marching band when I was a teenager, in college and in my work life, when driving an emergency vehicle, when locating items others seemed to struggle finding, and when driving my personal vehicle.

After the polytrauma, it was like someone took that inner compass and smashed it. When I tried to lift my head, the room would spin like just got off a tilt-a-whirl on the Gravitron from a carnival.  When they would sit me (and eventually after I sat up on my own) I would be so enormously dizzy that sometimes that labyrinth of puking was unavoidable.  No to mention the throbbing headaches that seemed to be everywhere and made my forehead feel like it was 50lbs all by itself pulling me forward.  The back of my neck ached and I would often have a “belly ache in my neck” if that makes any sense. Looking up and left exacerbated EVERYTHING and so I learned to avoid looking that way.

redTwo and a half years after the trauma I started to return to driving. I would learn my inner compass was missing/broken.  I was horrified to find myself LOST after taking my kids to school.  In fact, I couldn’t remember how to get there….a trip I had made hundreds of times before.  I used a GPS because it was like I had never been there before.  Now THAT made me feel coo-koo….I didn’t understand.  Then I got lost heading home.  I literally ended up 20 minutes in the opposite direction because I couldn’t remember what to do or how to get where I needed.  GPS became an absolute crutch.  As time has gone on, I have gotten better about figuring out my routes.  Often times I could think of where I needed to go…yet applying it to real life outside my head was a different reality entirely.

It is a horrific and scary feeling to feel LOST.  I called my husband in tears a few times telling him I didn’t know where I was or how to get home (when phone died and I didn’t have access to GPS).  Most times he would answer the phone, sometimes  he didn’t hear it and I would be out there in a full blown panic.  I would feel scared and the noise around me seemed to get magnified to a level that felt like it was trying to kill me.  I could feel myself slipping into this dark space of isolation and I literally couldn’t think of how to fix it.  I do not remember how I made it home in those elevated panic times.  What I do remember is deciding I couldn’t drive yet and that I didn’t feel safe outside of my house, let alone my room.  It has been a massive process to get back to driving again.

Now I am driving more often and the short local routes I do really well at.  If I forget I just turn on the GPS.  We purchased a charger for the vehicle so I never have to worry about my phone dying (unless the bill doesn’t get paid – GPS doesn’t work then by the way).  So the phone is as important as the mortgage for me as far as financial priorities.

Buildings I have been to a lot I still get turned around in since my Trauma.  Oddly enough sometimes I get lost in my own neighborhood or kids’ schools.  If I survive an outing without getting lost, having a panic attack, or struggling to survive the experience – I consider that a WIN!

  1. Peat and Repeat Languaging – the way I communicated became annoying and complicated.  I not only would have to read numerous times a sentence or a paragraph to catch it all, I would also have to listen to a voicemail like 4-5 times to get it all because remembering the number or message seemed suddenly impossible.  When people would talk to me I had to have them look at me to hear them.  I found myself reading lips to understand what I was hearing, or thought I was hearing. Speech Bubble Indicates Speak Dialogue And Speaking If they turned their backs to me I would ask them to turn around and repeat what they said.  Some folks are super accommodating, some act put out by this.  Often times folks think you aren’t interested in listening or you do not care about what they said.  It wasn’t that, I just couldn’t process what they were saying.  Sometimes the words didn’t make sense. It’s like I was listening to a foreign language sometimes.  Sometimes it was like I could see their mouth moving, hear noise coming out, yet couldn’t make out the words.  This was maddening.   Oh!  if I was doing something and all my focus was on it (like typing or reading), forget about me hearing you..it just didn’t happen.

This has gotten better for me in a lot of ways through my rehabilitation journey,  not better in other ways – however, I keep learning ways to cope with it despite its abounding annoyance.  I am a lot better about being vocal about it though with who I am speaking to now.  Once you get used to functioning at a certain level it just becomes your new normal and you accept it as what is.

  1. Where’s the Word?… Doh! – Okay, I have always been a talker. I started talking early as a baby and I haven’t quit since.  I love words, their meanings, and expressing myself in a creative fashion.  I won spelling bees in my younger years and have always been a semanticist and quite loquacious.

However after the trauma, that seemed to also have changed.  I couldn’t remember how to spell basic words.  I find myself misspelling things often and missing the same specific letters when I type. I would look at say……a couch.  I could see the word in my head, I knew what it was, yet all I could get to come out my mouth was “that thing there that we sit on”.  I have become accustomed to calling things differently than what I am thinking now or what they actually are. Sometimes I come up with some pretty creative descriptions.

  1. Bon Appetit No More – Food has been my friend for years. My family has always celebrated with food, rewarded with food, and used meal times as a social gathering time to express our love while being able to share something we all enjoyed….cooking, talking, and spending time together.  I could always tell when I was hungry, when I was full, and when I was snacky.

 

bonAfter the polytrauma I seemed to lose the ability to feel hunger or fullness.  For some bizarre and I am sure possibly scientific reason I lost my appetite or desire for food in general.  No more interests, no more favorites, no more “cravings”, and no more enjoying the things I used to enjoy before.  My sense of taste and smell had changed.  Some of the things I enjoyed before now repulsed me.  Smelling certain types of food cooking was enough to turn me “green” (sick). Just looking at certain types of food was repulsive. The connection with food emotionally seemed to go on vacation.  In fact, if I wasn’t brought my meals in those early months and sometimes  still…I just wouldn’t eat because I would just forget to eat or have no interest in it.

As time has progressed, every once in a while I go from no appetite to suddenly HANGRY (angry rage filled hunger – almost a desperate hunger); HANGRY is rare though.   More often than not, I forget to eat or have no interest in eating.

I do like some textures or flavors of some things that I never liked before.  My family and I equally find this as quite bizarre.

  1. What Temperature Is it Anyway? I remember a few specific things during my recovery process that stood out and I still wrestle with. Chronic pain I have written about in other Blog posts and will probably write about again….however what I am referring to here now is TEMPERATURE.  More specifically FREEZING MY TUCHUS OFF!!!  I was always cold.  I couldn’t get warm, not even in the Summer months.  People would be sweating and I would be freezing and covered up with  my electric blanket and shaking from being so cold.  I gotta tell you that being so cold that you are shaking and having multiple fractures does not a good combination make!

jamaprintI have come to realize that my thyroid-pituitary-hypothalmus axis was way off.  My hormones were all over the place and apparently I rattled that temperature control  center of my brain pretty good.

I still have some great hurdles to overcome when controlling my comfort regarding temperature.  At least now I can feel warmth eventually and not be as  cold.  Sometimes, I even get hot flashes occasionally and naked isn’t naked enough to cool down.  More often than not though, I still get cold.  Brrrrr’kin is what the kids call it.

So what temperature is it anyway?  I am probably not the most reliable person to                ask.  You might want to check outside…..then let me know.

 

There are many more nuances that go along with recovering from a polytrauma and these “7 exposed mysteries” are not an exhaustive list, not even for my experiences.

However, they are some of the things that are not necessarily visible changes to anyone who isn’t experiencing them directly and I felt they were worth mentioning.  If you are experiencing these things, you are not alone.  What you are experiencing is real.

Hopefully, understanding that this is now your new normal will help you accept yourself as you evolve towards your plateau in search for treatment and healing.

 

 

Michigan No-Fault Insurance – Is It Worth the Fight?

The answer to that questions is quite simple for me.  it is a resounding and emphatic YES!!!

I am so eternally grateful for the No-Fault system. I sustained a Polytrauma which included multiple orthopedic fractures (5 in my spine alone, ribs, wrist, pelvis, scapula/shoulder, soft tissue injuries, nerve damage, and a traumatic brain injury).

Thanks to Auto No Fault I was able to have the necessary MULTIPLE xrays, CT Scans and lifesaving surgeries to help me survive. I had to go out of State to save the use of my arm due to a shattered scapula as we have no Trauma surgeons in Michigan who were trained to do that repair. Michigan No Fault made it possible for me not to lose all of the function in my right arm. My whole scapula and shoulder had to be rebuilt.

Medicaid and Medicare would NOT have covered this. We would have been stuck in months of pre-authorizations and appeals and I would have died.

I would have left behind my husband (who is also my provider so I could remain at home and not in a nursing home) 6 children, a mother, a brother, a
nephew, and other family. I would have lost the ability to advocate for others and to function at the level I currently function at.

My story would have ended tragically. My story, while yes, tragic and traumatic continues to be HOPEFUL due to Michigan Auto No Fault.

I WILL need surgeries in the future. It isnt IF….its WHEN. Auto No Fault provides me with the medical security to still be here for my children, and hopefully some day….their children.

Please, I implore all voting members to vote

NO ON HB5013

YES on the Fair and Affordable No Fault Reform Plan

You are literally investing in Michigan’s future and survival by voting to save lives and protect the communities you are pledged and voted in by your constituents to serve.

What do you want your legacy to be as a politician, as a fellow human being leaving their mark on this world???

Someone who saved lives and cuts costs by holding insurance companies accountable, or someone who sentenced thousands of men, women, and children to death and financial ruin?

You can be the implement of positive change. You can be a hero. You can be a HOPE’ster.

NO ON HB5013

YES on the Fair and Affordable No Fault Reform Plan

Thank you.

https://hopetbi.com/2017/05/29/be-a-hopester/

 

UPDATE: 11/2/2017

HB 5013 did not have enough votes to pass. This is great news for the whole State, but especially for the recipients of No-Fault benefits.

The Latest and Greatest

Check out our Updated “How You Can Help” page.

https://hopetbi.com/about-our-site/how-you-can-help/

Vision and Sensory Center

Vision and Sensory Center – Cutting edge of current science and treatment of traumatic brain injuries.

https://www.facebook.com/Vision-and-Sensory-Center-1822007318073764/

Standard of Care

Medical-Standard-Care

What Exactly is “Standard of Care” as it relates to the medical community?

The “medical standard of care” is typically defined as the level and type of care that a reasonably competent and skilled health care professional, with a similar background and in the same medical community, would have provided under the circumstances that led to the alleged malpractice.

A diagnostic and treatment process that a clinician should follow for a certain type of patient, illness, or clinical circumstance.SOC

The level at which the average, prudent provider in a given community would practice. It is how similarly qualified practitioners would have managed the patient’s care under the same or similar circumstances.

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I have learned over my entire life through various experiences; also being in the medical field for most of my adult life as a healthcare provider in some way, shape, or form that the Standard of Care is as varied as each personality that goes along with the person representing that Standard of Care.

When I had patients I always tried to give them the best of me and my knowledge of my acquired training at that time.  When I came across something I didn’t know (which was a continual learning process for sure)…. I immersed myself in learning about the things I didn’t know how to answer for what I was specializing in at that time. That was my way of making sure that I didn’t have that same issue come up again.  I guess I just assumed (yes, we know the misnomer of what assume means) that this is how all people sought to learn when they had a passion for medicine.  Specialists in a field even moreso…beyond the norm even.

Specialists, surgeons, Department heads I guess I always expected more of those folks.  Surely they kept up on all the latest trends, the newest studies, the symptomology associated with the topic(s) they specialized in.  Surely they could spot a problem, would assure that the best outcome for the patient was acquired, especially in favor of positive outcomes with their name attached to it.

Surely I could look at them, listen to them use my voice to communicate with them, and trust they knew what they were talking about because after all, their fervor and thirst for knowledge was above and beyond what the average medical professional entailed.  Certainly more than what I was trained to know.do-no-harm

So it only made sense that on that fateful day when I became the voiceless patient, clothing cut off to stark nakedness in an emergency room with massive injuries, multiple broken bones, head injury, and clinging to life with each labored breath…..that the sheer mechanism of injury (severe car wreck with ejection and other driver pinned and needing to be cut out) should have demanded a certain Standard of Care from every provider I came into contact with, within that first year, and every day after that.

I have had some really great providers. I still have some great providers. I want to say that first. There are a handful who have done their due diligence and even exceeded the Standard of Care.  They are the ones that listened.  That actually enjoyed their job and their patients. They are also the ones that keep up on the current and updated things in medicine, ironically enough.  They are the ones who think of ways to make things happen instead of making excuses of why they cannot make things happen.  They are the providers that never give up on you and take risks to better your quality of life.  They are few but mighty.  These are the providers I have learned a lot from and have enormous respect for.

The providers who fell short on their Standard of Care, or didn’t even attempt to live up to it…..  Those providers left me impacted in ways that created a ripple affect that delayed my care, caused me further injuries, and exacerbated things for my recovery process….and not in a positive way.  They are the providers who didn’t listen.  Who jumped to conclusions based on opinion rather than facts.  They fed off of other reports by other providers that also did not care, did not document properly, or dropped the ball in some fantastic and important way;  perhaps even adding wording that invalidated the injuries that actually were quite legitimate and yet ignored.  These are the providers that I felt I knew more about my care and the latest treatments available than they did (yes even if they touted themselves as specialists in that field). These are the providers I lost respect for, or never had the chance to establish such for.

The Standard of Care cannot be overstated in its importance.  If you specialize in a field, learn all you can about that field.  Study it, know it, and be willing to learn more about it. Medicine is changing daily and if a patient brings you the current studies, be grateful. If they discuss them with you and you have never heard about them, go look them up and research them yourself. Knowledge can only make you better at your craft.  If you cannot listen…truly listen to your patient when they say they are still suffering – you are in the wrong line of work.  Go on a quest, do no harm, and advocate for your patients.

The Standard of Care echoes through many professions, yet in this particular post we just address the medical view as a patient, medical advocate, a Survivor.

Expectations+of+Standard+of+Care

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