This in a partial transcript from the talk I gave at the March 5, 2016 Brain Injury Association of Virginia Conference.
I didn’t get married – the first time – until I was 28. So I spent a few years as a young and single career woman who could really identify with the cartoon character Cathy. There were many times when the punch lines about dieting and dating could have been taken from my life. Oh and Mom. Yes, Mom was so nosy, suddenly appearing in my life at all the wrong times! Poor Mom. Now that I’m a mom and a grandmother myself, I can look back on things with the wisdom of the years. I know better. She loved me and she was very concerned.
You see, just before my young career woman stage, when I was 22, on the last day of classes when I was a senior at the College of William and Mary, I was in an automobile accident in my cute little baby blue Volkswagen. My brakes failed and I ran through a stoplight at 50 mph into the side of a 1967 Oldsmobile sedan. I broke the windshield and bent the steering wheel out of shape. I must have been slamming on the brakes for all I was worth because I broke my legs in three places. For the next week I didn’t know where I was or who I was. When I came out of it, there was Mom, sitting by my hospital bed. “Sara, do you remember that you wrecked your little Volkswagen?” I can remember her saying. She stayed by my side in the hospital for 5 weeks and one day.
It was 1977, and my legs had been the really big deal back then, 39 years ago. No one, not even the doctors, talked about traumatic brain injury (TBI). Because my head was bleeding, they took an x-ray, didn’t see a skull fracture, and sewed the skin back together. There was no such thing as a real MRI yet. The doctor did tell my parents that they probably shouldn’t let me go to graduate school, as I had planned to do, because of my “neurological condition” . . . but no one really knew what that meant.
I went to graduate school, although I had to drop out after the first semester. I was anxious and confused. After a bit more healing, I kept on trying to do the things I expected to do in life even though there were lots of stops and starts . . . and career and social failures.
Finally, 27 years after my brain injury I had a good old-fashioned nervous breakdown, and – at last – someone told me I should go to see a neuropsychologist. I did, and she told me that what was wrong with me had a name: traumatic brain injury. So for the last twelve years, I’ve been trying to understand the ongoing symptoms of the traumatic brain injury I never knew I had.
Part of my healing process involved going back to school again, in my fifties, to get a master’s of science degree in Communication Sciences and Disorders. In graduate school, I learned about the brain-based conditions I had, including hemiparesthesia and hemiparesis, the condition of left side numbness, tingling, weakness and muscle spasticity, caused by a wounds deep in the brain, that no doctor had ever explained to me before. I learned about diffuse axonal injury, common to people who have a back and forth, coup contrecoup injury. I learned more about the nature of my ear ringing, or tinnitus, and because of a school project, I went to an audiologist who diagnosed my central auditory processing delay for the first time.
In graduate school, I teased apart my various brain injury symptoms, both the physical issues caused by my long-ago car crash and the thinking process problems that made me say and do things, that in the end stood out to others as my personality, my quickness, my attitude. I had wounds to the thinking process neurons of the brain. Like the neurons and neurochemicals that played a part in my numbness and tingling, some of my listening, processing, remembering, learning, planning and communicating neurons had not recovered. These thinking process wounds revealed themselves as problems with decision-making as well as emotional control and behavioral regulation problems.
So now, here I am, all these years later and while I feel a lot better because I understand the traumatic brain injury disease process and I have a good handle on my particular symptoms, I also know that I’m still living with that brain injury. And I am aging with brain injury. When I was injured, I was 22 years old and my mother was just 54. Now I’m 61 and my mother is 92.
Sometimes these days I feel like I have more in common physically and cognitively with my 92-year-old mother than with my peers. I don’t want to go out because I’m frequently too tired and I have mobility problems. And I have trouble remembering names and information I need to have at hand to participate in lively conversation. Besides, I don’t have many friends anymore. I’m scared to drive because of my slow thinking and reactions. My income isn’t what it once was. I can’t hear a thing in those noisy restaurants. And my arthritis is killing me!
There are many similarities between Mom and me as we age. When we age, all of us become less mobile, we can’t run as fast or jump as high as we used to. We have more health problems, from heart problems to arthritis. Colds and flu hit us harder. We lose some independence as we give up driving and need help with heavy lifting. It can be pretty depressing, especially as we lose friends for many reasons. People with brain injury seem to have a more generalized loss of sensation in addition to the normal old-age hearing and vision decline. Our memory problems are a little different. Yes, we forget people’s names too, but our memory loss has more to do with thinking and learning, processing new information.
A few years ago when I was feeling especially achy and staring down at my 60th birthday, I happened upon an article about aging with brain injury and that got me thinking . . . and reading more on the subject. The experts tell us that there are specific brain-injury-related health risks, we are more susceptible to the effects of aging, our life expectancy is shorter, we may have hormone issues that hasten aging and there may be increased risk of dementia and Parkinson’s Disease. The news is, all in all, a little upsetting. But, it’s not all bad news, I promise. Stick with me to the end.
Today we know that TBI is being reframed as a chronic disease process. Chronic – long-lasting in nature – because right now there is no cure for brain injury. Yes, you were brain injured and you will live with some brain injury symptoms for the rest of your life. Brain injury meets the World Health Organization’s definition of chronic disease because brain injury is permanent, it kicks off non-reversible pathological alterations, it requires special training of the patient for rehabilitation, and it may require a long period of observation, supervision, and care.
Dr. Brent Masel writes and speaks on this topic extensively. You can read an interview with him on Brainline.org or go to this article in the Journal of Neurotrauma or one of the many others he wrote or contributed to. The big picture is that moderate to severe TBI is the beginning of a lifelong disability. It is not just a brief setback from which you fully recover. TBI requires lifelong disease management.
But, there are lots of variables. According to this chart from the Department of Defense, 82.5% of brain injuries are mild. After 1 to 3 months, folks with a mild TBI can expect they will get pretty much back to normal. If you have a moderate to severe injury, though, you can expect some good recovery in the first two years, but then you might continue to get better . . . or you might decline. The difference in your recovery outcome has to do with age, health issues, and a muddle of psychosocial issues that play an important part in good recovery and good outcomes: things like family support, financial resources, education, and all of the emotions that go along with either having enough or not enough of these things.
This chart shows this information in another way. You’re moving along as some pre-injury level of function when your injury happens. For a period of time after that you have some alteration of consciousness or post traumatic amnesia or you’re in a coma. If the injury is mild, you get over that altered state of consciousness fairly quickly and over the next year or so, get back to normal. For those with moderate to severe TBI, it takes hours, days, weeks, or months to come out of coma and amnesia. Then, you recover some and can always get better and better with time, but you’re probably never going to get back to baseline normal because there are permanent injuries.
One more view of this information shows how it relates to aging as a disease or pathology that can be observed by doctors. Because we have been brain injured, we may show signs of “old age disease” to our doctors earlier than we might have if not for our brain injury.
People with TBI are at increased risk because we are more susceptible to the effects of aging that come naturally. But, we are more or less susceptible, it is believed, because of our neural reserve.
What is neural reserve? It’s the neurons and neural connections that make up your brain that you build up over your lifetime. They are strong if you have more education and enjoy other socio-economic benefits, if you are healthy, get lots of exercise, and eat right. The more neural reserve you have in the bank; well, that means you can afford to lose some if you sustain a brain injury and your brain injury won’t show as much.
But with age, the difference, even for those with more neural reserve, becomes more apparent. People with TBI are frequently disabled earlier due to physical and cognitive decline that comes earlier than expected. As we age, most people become disabled in one way or another. But people with TBI are frequently disabled before 80. If they went to rehabilitation after their injury, chances are that by five years out, they will forget what they learned. 84% of persons with TBI have co-occurring disabilities and are at risk for worsening of those conditions or having another fall or crash that will put them back in the hospital.
We are at risk of an early death coming from seizures that are poorly controlled. Personally, I worry a bit about falls because of vestibular problems and weakness in my left side. Frequently, people with TBI don’t get enough exercise, unsurprisingly enough, because of physical disability. Alcohol and other substance abuse is a problem because sometimes we just need something to stop the pain in our bodies and in our minds. It’s again no surprise to me that suicide is frequently considered, though less frequently, carried out. Accidental death for a variety of reasons is a risk.
Because of the many risks, people with TBI are 2.6 to 3 times more likely to experience an early death. There is variability from individual to individual, but we still have an elevated risk level, according to the experts who have made allowances for social, demographic and psychiatric differences.
Many of us have heard that we are at greater risk for dementia and Alzheimer’s disease. Although why and how this disease process happens is still unclear. Parkinson’s disease and Parkinson’s like symptoms are also related to brain injury. These include a head forward posture, droopy face, tremor and a slow, shuffling gait.
TBI has been linked to growth hormone insufficiency. Because it is diminished, the body ages prematurely. The pituitary gland secretes these hormones. Monitoring the endocrine system is not currently a part of what doctors do when treating a patient with TBI, but the symptoms of hormone dysfunction are similar to what we see in persons with brain injury: depression, fatigue, poor concentration, irritability, and slow processing. I am reminded of the fact that a doctor I saw in the 1980s always gave me B12 shots. He was sort of on the right track . . . but not really.
I frequently use the phrase “slow processing” because I like it better than cognitive decline. Cognitive decline is what is happening, but slow processing is a more popular term that paints a better picture of what cognitive decline looks like. Slow processing. Slow on the uptake. Slow to get the joke. Slow to reason and problem solve. A few weeks ago my car wouldn’t start. I was about 20 minutes from home. I caught a ride home with someone and when I got home, I remembered to call AAA. Why didn’t I just stay with my car and call AAA from there? This, unfortunately happens to me too often and is a sign of slow processing, cognitive decline.
Cognition is a set of all the mental abilities and processes related to almost everything we do: knowledge, attention, long-term and working memory, judgement and evaluation, reasoning, problem solving, decision making, comprehension, and verbal and non-verbal communication or actions that are produced by our thinking processes. Thinking or cognition skills decline with old age no matter what, but having compromised connections to start with certainly doesn’t help matters.
These compromised thinking skills usually begin to be noticed by the person with brain injury or those close to him or her a couple of years after the actual injury, by which time everyone thinks the injured person should be “all better.” The person with TBI thinks, “Am I crazy or something?” I used the word “crazy” and “stupid” a lot in an early draft of my book, Not What I Expected: My Life with a Brain Injury (I Didn’t Know I Had). Anne McDonnell, BIAV executive director, read that draft and gave me a lecture about using those word to describe people with brain injury. But hey, that’s how I felt early on – crazy, stupid decision. Does anyone out there agree with me? Having poor thinking or slow processing problems leads you to do crazy things sometimes, right? I know that after a few years of not know what was the matter with me and feeling a lot of frustration over my stupid decisions, I withdrew from people, I had zero confidence in myself, and started drinking too much. I had major depressive disorder and was suicidal. Yes, my quality of life was not good. It’s taken me a long time to climb out of that hole . . . just in time to face the natural increase in cognitive decline due to aging!
But instead of moaning and groaning too much more about the problems of aging with TBI, I have to tell you that I have finally accepted my brain injury symptoms, something that, if you’re lucky, you will get a grip on before you turn 60. So here’s where I put my MBA skills to work: I live according to my risk management plan. There are increased risks, but there is so much we can do to manage them! And the first thing we can do is to reduce our risks is to adopt a life-long recovery attitude. Put into place a plan for avoiding the risks by exercising, doing yoga to work on your balance, using as many strategies as you can to compensate for your weaknesses – journal, use liberal amounts of Post-It notes, use a day planner, assemble a get out the door space need the door as a home port for everything you need shelf, I’ve found that arranging the clothes in my closet by color groupings decreases my decision making load. Do whatever you can to decrease your cognitive load so that you can maximize your use of existing cognitive resources. And speaking of resources, don’t put off making a financial plan and set a course for what you are going to do if or when your caregiver or family should age-out before you.
Part of your long-term risk management plan should include attention to your health, both injury related and preventative care. Sometimes we get so focused on looking for a “cure” for our brain injury symptoms and we get so mad about going to doctors who don’t have the magic pill that we disparage going to doctors at all. I know I went through a decade of not going to any doctor other than my neurologist. When I got sick one time with a garden-variety infection and begged him for help, he was surprised to learn that I wasn’t keeping up with any non-brain injury related care. After a good scolding from him, I found a family doctor, and got caught up on all of the other preventative tests and screenings.
Also, if you haven’t been to your physical, occupational, or speech-language therapist since these therapies were prescribed right after your injury, think about going to see them again for a tune-up. My arthritis condition is a complication from my injury and aging. I should check in with a physical therapist! As we age, it’s important to see a speech-language therapist for a cognitive skills check-up to learn or relearn compensatory skills. Ask an SLP to help you establish routines to make it easier to think through tasks that are important to you but that often trip you up. Practice thinking routines that will make meeting old friends or going to parties less stressful.
A risk management plan should also include diet and exercise. I’ve never been good at making myself exercise and I can blame that on my legs to some extent. I do love to spend time outside, so if I think nature and outside instead of exercise, it’s just more pleasant for me. I have a special little dog, Cici, and I call her my 4-legged exercise machine. We walk at least 2 miles a day. Importantly too, if you’re concerned about weight, remember that a diet plan is most important because weight loss or maintenance is controlled 80% by diet and 20% by exercise. I do yoga too, and that’s my slow and easy exercise of choice. If you have trouble with arthritis or other old-age diseases, I highly recommend gentle yoga for flexibility, balance, core engagement, and peace of mind.
When aging with brain injury, your risk management plan must include lots of mental health exercise too. Keep your mind working. Luminosity and other computer brain games are not the cure, but they can be part of the cure. Any sort of mental activity will keep your brain in the best shape possible. Suduko puzzles are great. Puzzles of any sort are good. Jigsaw puzzles. Read magazines, books, blogs. Listen to books on tape. Reading and listening help you practice short-term memory skills as you remember the plot and characters. Stay involved and be productive. Learn a language or learn to play a musical instrument. Knit or crochet. Volunteer at church, schools, hospitals, community agencies. Caring for others is the best kind of care for yourself. Get a pet to love. Join a club. I became a Virginia Master Naturalist! There has got to be something out there for you. Socialize. Join your local brain injury support group! If there’s no support group in your area, talk to someone at the Brain Injury Association of Virginia today about starting one!
Studies show that as we age with TBI we discover reserves of inner strength that we never knew we had. A new kind of optimism arises that’s born out of self-acceptance and self-discovery that increases. When you’ve been knocked down, you come up again swinging, with a new appreciation for life. Spirituality is a big part of that renewal. Personally, I meditate and don’t know how I’d cope without that skill now. Once I accepted my brain-injured self and with age and experience I find that I can relate to others much more easily and honestly than I could when I didn’t understand my brain injury.
If you had told me that everything was going to be all right when I was 48 years old, I wouldn’t have believed you. Today, my life is good. It’s still not what I wanted or expected when I was 22. But everything is all right and some days I don’t feel so old at all. I look at my 92-year-old mother, consider her love of life, and I imagine that I have many more active and worthwhile years ahead. I’m going to manage my risks and make the best of them. This is what life-long recovery and aging with brain injury looks like too.