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:

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Our Newest HOPEster Chasity

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

#MoreThanMyBrainInjury

Chasity Lee Christian – Survivor

New Page Added – Clinical Neuroendocrinologists

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

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

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

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

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/

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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

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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

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