Locked-in Syndrome

I'm on a mission to raise awareness about a rare condition called locked-in syndrome. My neighbor, Dan, a 34 year old world class drummer, has been locked in now for two years, due to a brain stem stroke. He has been completely paralyzed except for his eyelids, and cannot speak, yet he hears and understands everything going on around him. I had never heard of the condition before this happened to him, and I recently learned that many people do not survive this kind of stroke, and that 90% of people who are locked-in die within four months. Dan is an amazing guy; he's talented, fun, and full of life. That's why I pledged to donate 5% of the first years profits from my book, Learning by Accident, to Dan's Trust.

In my opinion, Dan is alive today because of his parents, Chris and Tom, the two most incredible caregivers I have ever met. They have given up just about everything to take care of Dan around the clock with very minimal help. When Dan arrived home after a few months from stays in two different hospitals, he had bedsores and no muscle tone. His dad, Tom, an architect, built a standing frame to "get Dan upright" a few hours every couple of days, and his family has worked tirelessly to stretch and strengthen Dan's muscles. They also devised a way to speak to Dan. Dan looks up for "yes" and blinks for "no" and they have an alphabet system to spell words with Dan, but this provides only minimal communication. Chris, Tom, and especially Dan work hard every day with the hope that Dan will speak and live independently again. And he IS making progress, but it's slow, as is the case with all brain injuries. Incredibly, they are not bitter or negative; in fact, their home is full of hope, love, and some of the most amazing food you ever tasted! Dan is a self professed foodie, who watches the food channel and has his mother whip up all kinds of wonderful concoctions. He can only eat pureed food because he cannot chew, and a lot of it comes from their flourishing backyard garden.

If you have any encouraging stories or news about locked-in syndrome, please contact me. To learn more about Dan and to help his family, check out Dan Duggins Trust on Facebook and watch Dan's progress at: Watch Magic Happen on Facebook too.

Serenity

Many people have asked me if my faith has helped me as a caregiver.  I'm often reluctant to answer with more than a short, "Yes."  I have always been private about my faith and yet I consider myself a deeply spiritual person. I pray constantly, for family and friends throughout the day, and every time I hear an ambulance go by. I've tried meditating to quiet the noise in my head, but have not been able to master the practice. The prayer that has helped me most, and that I repeat to myself daily, is this section of the Serenity Prayer.

It's simple, yet profound. I find it comforting as well as informing. This simple prayer helps calm me when I want answers and I'm not sure there are any. What words or meditations help you when you try to destress or need an emotional boost?

Carefree

When I was a full-time caregiver, I wondered:
What must it be like to have an uninterrupted life?
What must it be like to have everyday worries that don't involve life and death?
What must it be like to feel carefree?
Of course I knew the answers, because most of my life had been that way--full of fun, relatively stress-free. I had a charmed life. Until my husband was run over by a car, and my father started acting strange (dementia) and my mother was told she was dying.

I now know what I didn't know before--that we all have freeze-framed times in our lives. Some last just a moment. Others freeze for years while life on the "outside" plays itself out. I remained in my frozen bubble for sometime, but in 2010, it melted, and I came back outside to join the parade. And yet, as I join in the daily run around of every day, I am now acutely aware of those that are locked in their freeze framed airless time zones...my neighbor, who had a stroke at age 34 and still cannot walk or talk on his own.  The people I have met who have endured injuries and illnesses far worse than I could ever imagine.

Can you ever truly forget once you have been touched by deep sorrow and loss?
Is there ever such a thing as feeling carefree again?
Maybe not, but there is peace. And there is great joy in helping those you know who have entered the dark place where you had once been.

Helping heals.

Behavior and Brain Injury, (it's not always about the brain injury)

As a kid, we often don't want to go to school, but we have to. As an adult, we often want to attend classes and seminars, but we don't have the funds or the time.

As a participant on a panel at the Virginia Department of Rehabilitative Services, where we discussed "How we Coped" with other caregivers, I was invited to stay at this full day conference bursting with information and speaking talent.

I was lucky enough to hear a talk by the inspiring Dr. Harvey E. Jacobs. The title of his talk was: "Brain Injury and Challenging Behaviors," but the content extended out to the family, community, world, ecosystem, and galaxy! His use of an animal slideshow at the end with a series of poignant questions places every human on earth flatly on a level playing field as he peels away the layers of what makes us all essentially human.
"Where do you live?" he asks. "Who are your people?"
"Do you live alone?"
"What do you eat?"

By the end of this slideshow, everyone in the room is moved to tears because he's demonstrated, through a simple series of questions and pictures, that no matter what behaviors anyone exhibits, no matter how different or dysfunctional someone may seem, we are all far more alike than different. We all require the same needs: a home, someone to love and love in return, and something to do. And when we act out, we are often reacting to our environment, our insecurity, or the fact that others have decided to take control of us "for our own good."

Thank you Dr. Jacobs for a lesson I hope to remember always.

April

April is an ambiguous month for me, filled with many emotional highs and lows. April 10^th is Anna and Mary’s birthday—one of the best days of my life, the day my two beautiful daughters were born! But on April, 11, 2007, my father passed away, and I miss him every day. A few days later, it all culminates with the anniversary of April 13^th 2002, the day that changed my life forever, the day I answered the phone in my kitchen and heard that Hugh was rushed to the hospital.

At the time, I had no idea our lives would be so incredibly altered, but looking back, 3:00 p.m. on April 13, 2002 began a whole new trajectory for me and my family. What seemed to be a regular day suddenly became a turning point.

The older I grow, the more events will be tucked into April’s calendar—new babies will be born, (Betty’s daughter, Katie, just had a baby boy named Jack yesterday!) and there will be weddings, funerals, engagements, and events we can’t begin to imagine. Both of my girls will be home tomorrow, and they will plant me a vegetable garden for my birthday (It was in March, but we waited to be together to celebrate) I can't think of a better gift than a spring garden full of promise. What do I wish for? Just this: the family in the yard, the sun shining, simple food, the sound of the voices I love to hear and their laughter--just an ordinary day.

Life is unpredictable, and full of wonder.  If I’ve learned one thing, it is to try to simply bend with the twists and turns life takes me on, to lean into the wind, and let it carry me along, because I know that even though there will be dark days, there will be an equal measure of light, if I only keep my eyes open.

Balance and Brain Function

I'm recommending a link as backup evidence of what I saw with my own husband's recovery after his TBI. As Hugh worked on his balance and strength training, his cognitive abilities soared. In my opinion, and apart from any science, I saw the greatest improvements in him when he began cycling and surfing again, two sports that require high levels of balance. The particular study I am posting was performed on elderly people in their upper 80's, which gives me great hope that ALL of us can improve our physical and cognitive abilities throughout our lives by improving our strength and balance. And, so what if it doesn't work...we will become stronger anyway, and it can't hurt to try this!

Deciding what particular routine should be done to achieve these results should be determined by each individual with their doctor. Best of luck. Keep striving! Here's the link:
http://www.ncbi.nlm.nih.gov/pubmed/18007119

Spring

Spring reminds us that no matter how long and hard the winter, new growth emerges.

In Virginia, our winter has been unseasonably mild and sunny, but it's still a thrill to see the Bradford Pears and Crabapple trees budding, and to be surprised by bright yellow patches of daffodils. Our attraction to and appreciation of flowers is a universal gift. Flowers make us breathe deep, they make us smile.

March is Brain Injury Awareness Month. The new campaign, "Anytime, Anywhere, Anyone" is in full swing.

Caregivers of loved ones with newly acquired brain injuries will be far too busy and preoccupied to stop and smell the flowers. Life stops for them for a long period of time, as they adjust to a new rhythm and reality.

Let's be caregivers of caregivers! Give a flower to a caregiver you love this month, and watch the smiles bloom.