Playing Dress Up

Playing Dress Up
Brenna wearing Mama's hat.

Friday, January 25, 2013

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?

Wednesday, January 23, 2013

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.

Tuesday, January 8, 2013

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.

Monday, January 7, 2013

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.

Tuesday, January 1, 2013

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.