Schedule

I am not lost. After leaving DC, the Taskmaster insisted that I take a few days off for total relaxation, turning off the computer and the phone. I was totally exhausted. He knew I needed the rest.

Today I was with the Culpeper family in South Carolina. This has been a great day with a wonderful family. Mack is an awesome miracle of  healing, not the vegetable the doctors said he would be. We had great conversation. Mack made sure I ate right, rested, and saw to it that my furry babies had complete enjoyment of their huge back yard. I was glad to be part of this family for this holiday.
For those I will see on the southern route, here is my revised schedule. Because I have become so tired, I have cut out the visit to locations in TN. Those will be for another time.

Atlanta, GA              November 23
Ft. Benning, GA       November 24
Moulton, AL             November 25-29
Florence, AL             November 30-December 1
West Monroe, LA    December 4
Ft Worth, TX           December 7-9
Lawton, OK             December 10
OKC                         December 11

Thank you all for your love, encouragement, and support. I pray you all had a blessed Thanksgiving. I know I am glad to be a part of your families.

NotesSenator Michael Crapo

This day belonged to Brenna Deshawn Dowd. In her honor, I spoke to her senator. Together, we can and will make a difference in how people with a brain injury are treated. One step at a time. One moment at a time.

 

This was a successful  day with Senator Crapo. The 15 minutes were well spent. Between his staff in Boise and the Taskmaster, my presentation was clear, concise, and impressed the Senator. This is a first step. He is supportive of the recommendations and willing to work with me on making changes. He was pleased to see that one of my recommendations regarded HBOT. This is something he is familiar with and, when he saw that was on my short list, he smiled. 

PAMELA DOWD NOTES FOR MEETING WITH SENATOR CRAPO

NOVEMBER 14, 2012 

NATIONAL RECITATION OF IMPORTANT FACTS ABOUT TBI

Each year, 1.7 million people face a traumatic brain injury,  and the numbers of hypoxic-anoxic brain injuries are uncounted.  On average three TBIs occur each minute. As a comparative number, 226,870 women will be diagnosed with breast cancer in the United States in 2012. TBI incidents are 7 times higher than breast cancer.

Besides the human impact there is a staggering economic impact. Nationally, the estimated costs in medical care and loss of productivity is $76 billion annually. For Idaho, the average 19,000 TBI new patients annually translates to approximately one half billion dollars in medical costs and lost productivity to its citizens.

Let me take a moment to help you understand the major causes of TBIs.

The leading causes of TBI are:
     • Falls (35%)
     • Motor vehicle-traffic crashes (17%)
     • Struck by/against events (16%)
     • Assaults (10%)

As I outlined in the letter I gave you in Boise on August 20^th.I am a mom on a mission to learn all I can about other families and medical professionals and their experience with TBIs.

I left Idaho on September 22 in my 20 year old motorhome. To date, I have traveled 3983 Miles, covering 11 states, 7 1/2 weeks on a self-funded trip.

CONTINUATION OF TRIP (MILES AND DURATION)After leaving Washington, DC, I have 4112 miles to go, crossing 13 states, visiting families and patients in five states, and one wheelchair manufacturer.

I have visited five TBI facilities in Nebraska, Wisconsin, Michigan (2), and Indiana.

The five facility’s I have visited, to date, range in size from 45 beds to 110 and provide outpatient and inpatient therapies.

These facilities ran the gamut from non-profit to for-profit.

Of the five brain injury rehab facilities I visited, Madonna Rehabilitation Hospital in Lincoln, NE was the most inspiring.

Madonna Rehabilitation Hospital is state of the art, accepting patients from 30 states and works with any state Medicaid that will work with them. Everything in the facility is geared toward returning the patient to a home environment, where families are an integral part of the recovery process.

Not only does Madonna Rehab work with TBI patients, they provide rehabilitation services for those who suffer hypoxic-anoxic brain injuries. The staff is complete with dentists, neuropsychologist and neuro-ophthalmologists, and counselors to assist families with each step of recovery.

Recommendations  

1. Support reauthorization of Traumatic Brain Injury (TBI) Act, H.R. 4238. The act requests $37 million dollars for projects. I 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.

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.

Senator, it is apparent that TBIs are part of a not so hidden modern American epidemic.

3. I urge that you consider forming a study committee of TBI health care experts, affected groups and organizations that have shown an interest in reducing the impact of TBIs on their business or industry (such as the NFL and NASCAR) and brain injury patients and their families. This public/private committee should look at reducing the number of TBIs occurring in the US and also offer solutions to improving the diagnosis and treatment of all brain injuries.

I make this recommendation because of what appears to be a lack of coordination of resources and research, and communication amongst the brain injury constituencies.

Such an effort will also bring greatly needed attention to this issue and should be a part of the larger discussion of the necessity of cooperation between business, industry and the medical community.    

 

Pondering

I have traveled almost 4000 miles, crossed 8 states, visited 4 levels of brain injury rehabilitation facilities, and am sitting 390 miles from DC right now. On November 14th, I will meet with Senator Crapo to discuss what I have learned on this journey. Top of the list will be the concerns of the families with brain injuries who have participated in Countdown to Congress.  I will include the concerns people have posted on luvurbrain.com as well as what I have learned at the facilities.

Yet, my mind still wanders at times. I think of my little Brenna who was not given the chance to recover and live. She deserved more than the inhumane treatment she received in many of the facilities where she was unfortunate enough to land. I should have been able to have her at home.

Today I walked into a Flying J where we had been before. In the convenience store, I stood in the place where she stood a few years ago, talking to a young trucker who had bought his mother a new front load washer and dryer for Christmas. She stored it in the barn  until her others wore out. He was taking time off to install it as he wanted the best for his mother. Brenna said, "Mom, I want a husband like that, one who loves his mother and is good to her." She never got that. Then I walked into the restaurant and passed by the table where she sat, working on a class assignment while I fueled up. My heart broke.

And I think of other things.

While traveling all these miles, the mind has time to ponder. My question is: For the person in the hospital or nursing home with a brain injury, does DNR really translate to MUD...Maintain Until Death. And that is ALL they do, never try to help the patient recover????

The mind can't help but think of these things. I never would sign a DNR for my precious Brenna. She was getting poor treatment in too many places already. I didn't want to give them another excuse to ignore her best care. She wasn't a MUD.  She was a human being, the joy of her mother's life.  Always and ever, I love my daughter, Brenna Deshawn Dowd.