March-Brain Injury Awareness Month

March 11th...Eleventh day of Brain Injury Awareness month.

Reach out to someone you know who has a brain injury. Cover their aloneness with your love.

Educate someone you know about brain injuries.

Acquired Brain Injuries (ABI) includes traumatic brain injuries (TBI) as well as hypoxic-anoxic brain injuries.

My Brenna, My Penguin

March is national Brain Injury Awareness month. Do something to bring awareness to brain injuries by honoring someone you love who has a brain injury.

God gave me a blessing when I was 35 years old. I had begged God for a baby of my own. I promised God that if he hadn’t given me a baby by the time I was 36, I would never ask again. Well, 5 ½ months short of my 36th birthday, my beautiful Brenna came into my life at 3 days old.

Through her, I saw the world through the eyes of a child. All through her life, she shared the wonders of God’s creation with me. She took me on tours through the night to find deer and other wild life that is only out at night. I sure miss those wandering times.

On her last Christmas before her brain injury, we went to the late service at a nearby church. The pastor talked about having the courage of a penguin to launch into the unknown in spite of the dangers. Soon our house gathered penguins. She said, “Mom, I want to be a penguin.”

Brenna girl, I didn’t know it would be this way but you are my little penguin. Your journey to recover in this broken health care system is a shining example to keep on doing the impossible, reaching for what professionals called the improbable, and yet, each day of your life was a miracle. Thanks for sharing your life with me, my little penguin.

In the blink of God’s eye, Mom will be there with you.

Let's Make Changes

Problems to address

As I traveled across the country, I consolidated the major concerns patients and facilities have for the recovery of brain injuries

1. Lack of accredited facilities that focus solely on brain injury rehabilitation. Rural states are at a distinct disadvantage to access brain rehab hospitals
2. Lack of adequate time for rehabilitation and recovery for all brain injuries
3. Lack of brain injury certified nurses, case managers, and therapists
4. Brain injury groups and facilities are not coordinating research projects and rehabilitation modules. One facility does not know what others are doing. Families and care-givers are left in the dark and find themselves reinventing the wheel with each brain injury.
5. Congress is slow to act on Traumatic Brain Injury (TBI) Act, H.R. 4238.
6. The educational process is deficient in informing medical staff and families the definitions of brain injuries.
7. With the media focus on TBI, the public is unaware that each year an unknown number of people suffer hypoxic-anoxic injuries (HAI) of the brain.
8. While the ICD-10 code is specific about the causes of TBI, the code is lax in defining HAI of the brain.
9. Transportation to brain injury facilities is inadequate or non-existent.

Recommendations

1. Develop a plan to establish regional brain injury rehabilitation hospitals.
2. Request that the Secretary of the Department of Health and Human Services revisit the rules on Medicare regulations regarding length of time allowed for rehabilitation and recovery of persons who suffer a brain injury.
3. Encourage nurses, case managers, and therapists to become brain injury certified
4. Form a study committee of TBI health care experts, affected groups and organizations that have shown an interest in reducing the impact of brain injuries on their business or industry and brain injury patients and their families. This public/private committee should look at reducing the number of brain injuries occurring in the United States and also offer solutions to improving the research, diagnosis and treatment of all brain injuries.
5. Brain injuries cross all levels of society. Ask your Congressional delegation to support reauthorization of the Traumatic Brain Injury (TBI) Act, H.R. 4238. The act requests $37 million dollars for projects. We respectfully request that in this process, a portion of the funds granted be focused on hyperbaric oxygen therapy (HBOT) as part of the protocol for hypoxic-anoxic brain injuries.
6. We need an educational process to learn the categories of brain injuries. All non-degenerative brain injuries occurring after birth are acquired brain injuries (ABI).  ABI is inclusive of TBI and non-traumatic brain injuries (hypoxic-anoxic).
7. The CDC (Center of Disease Control) must begin a process to collect data and report HAI brain injuries. Causing the collection of HAI data would significantly increase brain injury awareness and the need for better communication for rehabilitation and recovery of patients who suffer a brain injury.
8. The CDC, the National Institute of Health, and the Congressional Brain Injury Task Force must begin identifying the classification of brain injuries in consistent terminology. Some causes of HAI are easily defined and can be categorized as TBI today.
9. Develop a plan to transport patients to the nearest brain injury rehabilitation facility.

March-Brain Injury Awareness Month

NEWS: The Twin Falls, Idaho school district is announcing a special arts contest: Don't knock your noggin.

Here are the rules for the contest.

Participants must create an imaginary character that will be a spokesperson for a youth sports brain injury awareness program. This character could appear in documents, books, or other communication devices showcasing the need for chilren to protect themselves and others from brain injury.

The entry should show a single illustration in addition to showing the character appearing in a four panel display indicating how the character could be used to discuss the issue of avoiding/preventing youth brain injuries.

Target audience: children between ages 5 and 15 (K-9th grade)

Participants must be attend one of Twin Falls' high schools, including the Alternative High School.

Use art medium of entrant's choice. No larger than 3 ft by 3 ft in size. One submission per student.
Judging by a panel to include Henley Blick (Project Administrator), a TFSD art teacher, an athletic director, students from the TF school district between the ages of 5 and 15, and Pamela Blaxton-Dowd.

Judging on 4 criteria:
     Creativity in development and design
     Use of the art medium and the talent showcased in the overall character design
     The written discussion offered by student, outlining  the use and development of the imaginary character.
     The overall appeal of the character to the target audience age groups mentioned above.

Submit by March 15.

Judging on March 18th with announcement at conclusion of judging.

Monday's visit to HBOT and Researcher

On Monday, I visited with a medical researcher, Dr. B, in eastern Idaho. She is working with a local HBOT center to provide HBOT for patients with PTSD and TBI at this time. The patients must be able to take care of themselves or have a family member with them who can take care of them. They can come from anywhere in the United States. They have 10 apartments (2 queen beds, LR, kitchen, bath, and laundry. During the study, the HBOT is at no cost to the patient. The apartments are $25/night and she hopes to find a foundation to offset that cost for families.   

Dr. B and her team blocked off their entire afternoon to be with us. Then we all went to dinner where their spouses joined us. We spent the evening talking about other ideas for research. We brainstormed ideas. When I mentioned things to her that would make caring for a patient easier, her eyes lit up. 

We talked about Brenna and her anoxic injury and they understand my personal concern that HBOT be given to hypoxic-anoxics in the early stages. I learned a bit about what is being done in other countries with HBOT. It made my head swim to know how much other countries are embracing HBOT for many health issues that aren't being allowed in the US. 

The HBOT center itself was such a wonderful place to be. The room was painted as an under-the-sea experience. Books for patients to read while in the chamber. TV to watch. I stood in the chamber and felt in awe that such a piece of equipment could be used to help so many people. 

I heard so much of what has gone on behind the scenes that we have never heard before. In England, a person with MS can use HBOT. England has over 60 HBOT units for MS alone. One European country is using HBOT to shrink tumors. They didn't feel I was out of line to suggest HBOT for hypoxic-anoxics as early as possible. I am going to track down a Scottish doctor they told me about to get his opinion. 

They agreed with me that HBOT is underutilized because too many physicians do not know the 14 indications that DO allow its use.

I learned that even with the sores on Brenna’s tailbone from the first nursing home, according to the criteria, she couldn’t have qualified for HBOT as a diabetic because the sore was not on a foot or leg,  hadn’t been there are least 30 days, and wasn’t deep enough to show bone or muscle. What kind of criteria wants an injury to be this far gone for a patient before allowing a treatment that has been proven to help? It doesn’t make sense to me. 

We need to do our best to get HBOT accepted for brain injuries, all brain injuries. No longer accept the negatives from doctors who profit on illness and intimidate us into believing they really do know best. One thing each of us should have learned through this journey, few doctors have a clue about the rehabilitation of the brain and the new frontier of research that needs to happen to ensure that every one with a brain injury has a chance to live and recover.

I am writing a White Paper (describes a report that states the social position of an organization) to add to the web site I am preparing. I need your help. I want you to respond to my questions so I can incorporate the responses into the paper. No names or any identifying information will be used for the White Paper. Thanks so much.

There are 10 questions. I really need your help so the White Paper will reflect more than just my opinion. Thanks so much. Please email answers to me at pamela@luvurbrain.net.

1: What steps should you take in searching out the best medical care?

2: Define the medical team you encountered and the explain the role each treatment specialist should take in helping with the recovery effort.

 3. How do you suggest preparing questions for the medical professionals who work with you in the treatment and recovery phase? Which questions are the most important to you?

 4. What is your role in monitoring the health care treatment of your loved one?

 5 What do you believe should be the family's role in participating in therapy? How soon should family involvement begin?

 6. How were the rules and regulations concerning treatment costs and duration explained to you? Did you know your options?

7. What do you think is the best way to establish a positive living environment for the patient and his or her family members during the hospitalization?

 8. What are the common stresses put upon a family during the recovery period? Which was the most difficult obstacle?

 9. What is the role "hope" plays in the recovery process?

10. How do you prepare the home (and the family members) for the patients return?

March-Brain Injury Awareness Month

March is just around the corner.  Plenty of time to plan something to honor those you love who have suffered a brain injury. It doesn't have to be anything big.

Give an interview to media in your area. Write a letter to the editor. Ask your local city councils to recognize the month.

The educational process begins with us. Somehow, in some way, get the attention of those in your community.

In this mother's eyes, brain injuries are at epidemic levels. If we had 1.7 million people a year contracting flu, the government would be declaring an epidemic of massive proportions. If we had 1.7 million people a year developing any kind of cancer, the research centers would be filled with researchers looking for answers.

According to the CDC, 1.7 million people a year suffer a traumatic brain injury (TBI). There are 800,000 strokes a year. The government is lax on collecting figures for hypoxic-anoxic brain injuries (HAI). Why?

It is up to those of us who have cared for and loved someone with an HAI. The ball is in our court to bring justice for those who suffer HAI each year. It is up to us, those of us who have lost a loved one to HAI, to reach out and make a difference, even if it is in a small way.

The CDC should be collecting numbers of HAI. WHO should be addressing HAI in the ICD codes the same as they have for TBI.

Will YOU pick up the ball.

Standing alone

Many times Brenna would say to me, "Mom it is alright to stand alone when standing alone is the right thing to do." Knowing her heart's belief keeps me going.

Bring them KICKING and SCREAMING!!!

I just completed a tour of the United States, visiting families dealing with brain injuries, brain rehab facilities, and one HBOT center in MI. 8116 miles in an aging motorhome. I know the medical profession tries to steer people away from HBOT. They call it experimental. ALL medical treatment at some time is experimental. ALL of it. We need to cross that barrier and drag the medical profession with us, kicking and screaming if we have to. Where would we be if Jonas Salk gave up at the first failure? Where would we be if Madame Curie just sat down and did nothing more?

Thirty years ago, I became chief fundraiser for Idaho's first pediatric liver transplant patient. Liver transplants were experimental then. We had to fight to get her funded and accepted. We have to fight for the treatment and therapies for our loved ones with a brain injury.

By the time I reached Washington, DC, and my senator's office, I was firmly convinced that HBOT was more than worth a try for patients suffering from hypoxic-anoxic brain injury. It only makes sense to me that when the brain is deprived of oxygen for any time, the brain should be given HBOT at the earliest stages to help revive the brain. HBOT should be available not only for TBI but for those who have lost oxygen. I believe hypoxic-anoxic patients should have a priority for HBOT if the families want it. This was a critical point I made with my senator in the few minutes I had with him.

Congress has been asked for a paltry $37million for brain injury research. I asked my senator to support part of those funds going toward HBOT for hypoxic-anoxic injuries. Just using the figures for TBI. There are 6 times moreTBI each year than breast cancer and 7 times more than prostate. That doesn't even include the hypoxic-anoxic patients for whom we know there is no data being collected. Brain injuries are at an epedimic stage.

There are no golf tournaments for brain injuries. No walks, no runs, no polar bear dips on New Years day for brain injuries. Change must come from those of us who know this journey inside out.

Thumbs Up

Beginning the trip on September 22, 2012, the Idaho Roamers are ready to roam. Tippy is just glad to go as she has traveled so many miles. She'll be 14 soon. Gibbs is happy, too. He has no idea how long this trip will be. He turned 2 in December.



This is Karen McGlamery Bramblett and her son Chris, with me in early December. It was a beautiful day for a visit.