Brain injury is a terrible fate. You are still alive, but you have lost something precious that made you who you were. Now you are a different person and must continue moving forward in life… but you’re lost and don’t know where you’re going…

For those who are already lost, rehabilitation is the only path. But along that path, one of the most important things needed is hope. Hope that one day you will make it to the end of a difficult journey and have a better life, even if it never be like it was before the accident.

Physical therapy, and the success that it has helped bring about with TBI survivors, is a powerful symbol of that hope.

DJ, a 15-year-old Alger Middle School student, was hit by a car five and a half years ago. He suffered a broken left femur, a severe neck injury, internal bruising and a traumatic brain injury.

Since the accident, he has had to relearn everything: how to sit up, swallow food, feed himself, talk and, now, how to walk.

”Somebody was a little bit more stubborn than what the doctors thought,” said his mom, Lisa Shockey. She recalled how medical staff first predicted DJ would not survive more than 24 hours and, if he did, he would be “a vegetable.”

DJ, asked how he has managed to come so far, had a ready response.

”I never give up,” he said, his words coming slow but sure. “I didn’t give up on life.”

DJ will be one of nine eighth-graders from Alger’s POHI program — for physically and otherwise health-impaired students — taking part in the end-of-school ceremony Thursday (June 2) with the 150 general education students. The crossing-over ceremony marks their transition to Ottawa Hills High School.

”I’m so excited for him,” said Liesha Crawford. who has taught DJ for four years. “He really, really, really has learned more than we ever thought he would.”

 
Back in March, we wrote a powerful testimony of TBI survivor Kory Christensen. These cases show two different cases of people moving forward on the path of recovery. The ultimate goal is for them to develop the skills to be able to function in and integrate with society. These people are still very young. Giving up is not an option because they still have so much more life to live. One of the most important things that we can do is provide the resources, environment, and support for them to be able to reclaim the life that was stolen for them.

At times, in some of the darkest moments of the struggle, it is easy for people to lose all hope… to give up and say “I can’t do it.”

BUT YOU CAN DO IT! The people who have done it are proof that it is possible. Take Oregonian columnist Elizabeth Hovde…

Being a brain trauma victim is a weird thing. You go from being someone people can tell you about but whom you can’t imagine being (and don’t remember being), to learning almost everything over again — walking, eating, handwriting. The death of your dad.

Three weeks or so after my skiing accident and the following coma, I was coming around and knew something was wrong with my dad. But I didn’t know what. That’s when my mom and sister had to tell me he died a few months ago.

I was fully present for his end days, but the brain hadn’t yet found a path to that information. I sat that night alone in my hospital room and remembered it all, reliving his death and feeling bad about making my family tell me the “news” all over again. There’s a job no one should have…

…I received help from a dozen or so workers at RIO, not to mention the employees at Legacy Emanuel, the first hospital I was at for two-plus weeks. I don’t remember being there, but I appreciate the care just the same. I owe the employees at these Portland places big kudos for all the meaningful work they do.

I’m about four months out from my ski accident and coma now and have been home since mid-February. Every day there is a new discovery and a new challenge. In addition to actual therapy, I find therapy in writing a journal because the writer side of me stayed put. You are who you are, it seems.

Though I am thrilled, and massively relieved, to be home with my husband and two small boys, I still find myself missing the positive people I first “awoke” to. And I am forever grateful for all that they and so many others have done.

Hope is everywhere. You just have to remember to look.

On that related note, American stage actor and artist Gary Busey (himself a survivor of TBI) gives back to his fellow fighters 

Into the last full week of the month of May, let’s take a moment to briefly reflect on this month’s Older Americans Month. It is a time for us to remember and appreciate what our elderly have done for us. It is a time for us to show support for them as they did for us when we were younger.

Every year the Administration on Aging (AoA) designates a particular theme as the central idea for Older Americans Month. This year the theme is Older Americans: Conecting the Community, highlighting how our seniors empower our communities, the reversal of how we as a community should be helping them. This inverse dynamic is a key reason of WHY it is so important to give back to those who came before us.

In addition, this year’s theme also emphasizes the “many ways technology is helping older Americans live longer, healthier and more engaged lives.”

This year’s activities included:

• A video challenge
• A video game tournament

READ MORE ABOUT OLDER AMERICANS MONTH

The end of May is coming up, but there’s still a week left for you to show your elders how much you love, appreciate, and support them.

Take your elders out for a nice dinner, or make your own video with them. Go out on a limb and try out video games with them. In the past we talked about how video games help to create a bridge between generations. It might feel weird at first, but you might be surprised when you find yourself outclassed by your grandma!

As a major stakeholder in the fight against dementia, it’s always very inspiring for us to see groundbreaking discoveries. The European Inventor Award, is the most prestigious prize for innovation in Europe, was recently awarded to Christine Van Broeckhoven for her dementia research.

Broeckhoven pioneered a method for identifying Alzheimer’s genes, leading the way for modern drugs and treatments to combat dementias such as Alzheimer’s. During her research, she discovered that patients with Down’s syndrome developed similar amyloid plaques – protein fragments that accumulate between the nerve cells (neurons) in the brain – to those with Alzheimer’s disease.

Van Broeckhoven took a chance and focused her research on chromosome 21, and it paid off in the form of several major contributions to understanding and combating Alzheimer’s.

She discovered a mutation in the Flemish and Austrian amyloid precursor protein genes on chromosome 21 in Alzheimer’s patients which causes the proteins to aggregate in the brain tissue.

She and her team also identified progranulin as a second common gene for frontal temporal lobar degeneration in which dominant loss-of-function mutations cause neurodegeneration.

Furthermore, they demonstrated genetic and clinical heterogeneity, with progranulin contributing to frontal temporal lobar degeneration, Alzheimer’s disease, Parkinson’s disease, as well as amyotrophic lateral sclerosis, a form of motor neuron disease.

The social costs of Alzheimer’s disease in 2010 were nearly $650 billion. Thus, anything to help delay onset even by a year would dramatically reduce these costs… a very desirable outcome.

New research is emerging all the time to strengthen the somewhat unusual connection between vascular disease and memory impairment.

Vascular dementia has long been acknowledged as the second-most common form of dementia, after Alzheimer’s. Research dating back to the late 1960s showed notably increased hypertension in those diagnosed with senile dementia.

When impaired blood flow to parts of the brain deprives its cells of necessary food and oxygen, vascular dementia is likely to manifest. The diagnosis may be clearest after a major stroke blocks a large blood vessel, thus obstructing the flow to a major portion of the brain.

A new study explores the relationship in greater depth:

This study shows that silent vascular disease is really common as we get older and it influences our thinking abilities,” said Charles DeCarli, professor of neurology in the School of Medicine at UC Davis and director of the UC Davis Alzheimer’s Disease Center. “We’re beginning to realize that vascular disease plays a major role in Alzheimer’s disease — they go together.”

The study findings are based on data from participants in the Alzheimer’s Disease Neuroimaging Initiative. The initiative tracks individuals who are normal, those who have mild cognitive impairment (MCI) and people with Alzheimer’s disease using magnetic resonance imaging (MRI), positron emission tomography (PET) imaging and laboratory and cognitive testing to track changes in their cognitive status…

…Cardiovascular disease, including hypertension, high cholesterol and atherosclerosis, is also common in the elderly, and causes “white matter hyperintensities,” regions of damaged brain tissue that look like white-hot areas on MRI scans. The purpose of the study was to better understand the relationship between white matter hyperintensities and the extent to which they precede, coincide with or follow short-term changes in cognitive functioning…

…All of the participants’ baseline cognitive functioning was established using clinical diagnostic evaluation, including the Mini Mental State Exam and the Alzheimer’s Disease Assessment Scale-Cognitive Subscale. Criteria for the normal group included no evidence of depression, mild cognitive impairment or dementia. Individuals were included in the MCI category if they had a subjective memory complaint or objective memory loss, among other measures. Participants with Alzheimer’s disease met nationally accepted criteria for probable Alzheimer’s disease.

Participants whose white matter hyperintensities were significantly above average at the beginning of the study lost more points each year in cognitive testing than those whose white matter hyperintensities were average at baseline. Those with mild cognitive impairment or Alzheimer’s disease at baseline had additional declines on their cognitive testing each year, meaning that the presence of white matter hyperintensities and MCI or Alzheimer’s disease together added up to even faster and steeper cognitive decline. In addition, participants who were older at baseline saw faster declines over time in their Mini Mental State Exam scores.

The researchers found that, at the outset of the study, the extent of white matter hyperintensities was associated with greater subsequent declines in global cognition over a one-year period.

LEARN MORE AT DEMENTIA WEEKLY

Programs for elders with disabilities have experienced severe budget reductions over the course of the last two years. However, despite the glaring considerations of the legislature that are coming up, a new ray of hope has just appeared.

At least $182 million in new revenue has become available through the “tax amnesty” program. Join us is asking for funds to be allocated from this source to help restore a small portion of the severe reductions in elderly support.

• $20 million to restore 2% of the 10% reduction in home care hours
• $1.1 million to restore reductions in the Senior Citizens’ Services Act
• $5 million to bridge the Part D pharmacy co-pay until federal relief begins
• $7 million to maintain parity in health care coverage for agency home care workers
• $4.4 million to restore eyeglasses and hearing aids in Medicaid program
• $3.5 million to protect choice for DD people in Adult Day Health

Please phone, email and visit with your legislators and ask them to fund these essential programs. Please call the legislative hotline at 1-800-562-6000 and ask your two representatives, one senator and the Governor to help our elderly in need.

Adult day health (ADH) has been moved under the COPES 1915(c) waiver. For some time, advocates in the field of ADH have voiced their opposition because there are many people in need of day health services who participate under the developmental disabilities (DD) waiver. This recent move would force people to leave DD for COPES, causing excess administrative headaches, delayed care, and unnecessary strain with no benefit.

Some estimates put that number as high as around 50% of our total ADH enrollment. 

What this means is that those vulnerable people are to be forced out of an essential service with no alternative. Some are proposing an alternative program for people under a DD waiver, but this would require millions of dollars from the DD system.

On a larger scale, this also calls into question the viability of maintaining adult day health on a widespread scale if we lose half of our enrollment.

With the state legislature in talks for the final version of the budget, it is crucial now more than ever for us to speak up regarding ADH services.

There are two steps you can take:

1. Send the message below to the people on the list, as well as your legislators if they are not on there
2. THEN, call the Legislative Hotline with the same message, 1-800-562-6000.

Sample Message

Please do not force our DD families out of their adult day health program and left with no alternative. To do so would be unfair and unwise. We saw the harm done July 2009 when over 900 people were forced out of adult day health. The consequences were tragic until the federal court intervened. Please maintain the current status of adult day health unless an appropriate alternative is provided for our participants who live with developmental disabilities. For all families who care for a frail adult, adult day health is a lifeline.

Send to all:

• Frank.Chopp@leg.wa.gov
• Pat.Sullivan@leg.wa.gov
• Ross.Hunter@leg.wa.gov
• Richard.Debolt@leg.wa.gov
• Gary.Alexander@leg.wa.gov
• Eileen.Cody@leg.wa.gov
• MaryLou.Dickerson@leg.wa.gov
• J.Darneille@leg.wa.gov
• Lisa.Brown@leg.wa.gov
• Mike.Hewitt@leg.wa.gov
• Edward.Murray@leg.wa.gov
• Joseph.Zarelli@leg.wa.gov
• Karen.Keiser@leg.wa.gov