photo caption: Actress Selma Blair, who has battled multiple sclerosis (MS), poses with an Alinker “walking bike,” a mobility device for people with disabilities, in an unknown location in this undated handout photo. Courtesy of BARBARA ALINK/ALINKER/Handout via REUTERS
WEYMOUTH, Mass. (Reuters) – Lindsey Main from Massachusetts was an active woman who enjoyed yoga, running and walking her dog, until she suffered a stroke in January 2018 and lost mobility.
While starting the long, slow process of exercise and rehabilitation she spotted actress Selma Blair announcing on Instagram she had the nervous system-damaging disease multiple sclerosis.
The 47-year-old star of films including “Cruel Intentions” and “The Sweetest Thing” posted images of herself using an Alinker mobility bike. The two began private messaging and Blair bought Main one of the bikes. Main says it has changed her life.
Now she can walk her dog again, go to the shops and dance on it.
“I think movement actually is the best medicine. It’s like that saying: ‘If you don’t use it, you lose it’,” Main said.
The bike was created by Dutch designer and humanitarian Barbara Alink, who made it initially as a mobility device for her ageing mother to use without the stigma attached to mobility walkers and scooters.
A successful crowdfunding campaign in 2014 brought about a launch in the Dutch market and a North America launch followed in 2016. Now the bike, which costs $1,977.00 ships worldwide.
“The Alinker is for everybody who identifies as an active person and happens to have a diagnosis,” said Alink.
“The feedback that I’m getting from people is that their life has changed, they can go out again, they have agency back,” she added.
The Alinker has three wheels and riders support themselves on a saddle and move their legs to push it forward. It has brakes and the high saddle means users can sit almost at standing height and speak to others at their eye level.
It is used by people with Parkinson’s, arthritis, cerebral palsy, spinal cord injuries, muscular dystrophy and peripheral neuropathy along with those recovering from strokes and surgery.
“Isolation is a bigger disease or a bigger burden on people than the actual symptoms of the disease itself,” said Alink.
“So with the Alinker, being engaged in life again because you can go out… your radius expands again,” she added.
Alinker is not classed as a medical device, so many insurance companies do not fund its purchase, leaving people to rely on crowdfunding or using the company’s rent-to-own scheme.
At its factory in Taipei in Taiwan, the company is working on prototypes for smaller Alinkers for children.
The central nervous system (CNS) includes the brain and the spinal cord. The CNS is protected by bones and the meninges (the dura mater, arachnoid and pia mater). Cerebrospinal fluid cushions the CNS from damage. There are 86 main nerves branching off from the CNS – 12 pairs of cranial nerves that branch off from the brain and 31 pairs of spinal nerves that branch off from the spinal cord.
The brain, which is housed in and protected by the bones of the skull, makes up all parts of the central nervous system above the spinal cord. A human brain can weigh up to 3 pounds and is one of the largest organs of the body. Like the spinal cord, the brain is made of mainly gray matter and white matter arranged in distinct layers. The top of the brain appears as a soggy, pinkish-gray mass that looks like a walnut.
The brain can be divided into two major parts: the lower brain stem and the higher forebrain.
The brain stem sits above the spinal cord and has many connections between them. The brain stem, the most primitive part of the brain, is made up of the medulla, pons, cerebellum, midbrain, hypothalamus and thalamus. The cerebral cortex, limbic system and basal ganglia make up the forebrain. The forebrain deals with homeostasis, emotions and conscious actions.
The brain’s outer layer is only 1/4 inch thick but if flattened out would cover the size of an office desk. It has about 50 billion nerve cells. The cerebrum is the largest part of the brain and is part of the forebrain. It houses the nerve center that controls sensory, motor activities and intelligence. The outer layer, the cerebral cortex, is made of nerve fibers called gray matter. The inner layer is made of a different type of nerve fibers called white matter.
The basal ganglia is found in the white matter. The cerebrum is divided in to left and right hemispheres. The left half controls the right side of the body and the right half controls the left side of the body. A mass of nerve fibers known as the corpus callosum connects the two hemispheres and allows communication between the two. The surface of the cerebrum is made up of gyri and sulci.
A cortex is the outer layer of any organ. The cerebral cortex is the outer layer of the brain, called gray matter. It is where our conscious thoughts and actions take place. Many of the signals our brain receives from our senses are registered in the cerebral cortex. The visual cortex is in the lower back part of the brain and is where our brain registers what we see. The somatosensory cortex is a band that runs over the top of the brain is where our brain registers a touch on any part of our body.
The motor cortex is just in front of the somatosensory cortex and it sends out signals to muscles to make them move. The more nerve endings a part of the body has, the more of the sensory cortex it occupies. A big portion of the sensory cortex is taken up by our lips and face. Our hands take up almost as much as our face and our feet almost as much as our hands. This is because we move our hands and lips all the time and both are very sensitive.
The cerebellum, “little brain”, is the second largest region of the brain. It is located behind and below the cerebrum and at the back of the brain stem and attached to the midbrain. It has two hemispheres and an outer cortex of gray matter and an inner core of white matter. The cerebellum is involved in movement and coordination, walking, posture, reflexes, eye and head movement. It coordinates subconscious movements such as balance and coordinated movement. The cerebellum is constantly receiving updates about the body’s position and movement. It also sends instructions to our muscles that adjust our posture and keep our body moving smoothly.
The diencephalon is located between the cerebrum and midbrain. It consists of the thalamus and hypothalamus which lie deep in the cerebral hemispheres. Centers in the hypothalamus regulate our body temperature, blood sugar, hunger and hormones. The thalamus is involved with sensory signals sent to the higher forebrain, in particular the cerebral cortex. The thalamus also participates in motor control and regulating cortex excitement. Several pathways connect the brainstem to the lower motor centers in the spinal cord and the higher ones in the forebrain.
The brain is the control center of the body and contains billions of nerve cells. The brain stem lies just below the cerebrum and in front of the cerebellum. It continues from the cerebrum above and connects to the spinal cord below. The brain stem is made up of the midbrain, pons and medulla oblongata. It carries out many vital functions of the body for maintenance and survival such as breathing, heartbeat, and blood pressure. It also controls vomiting, coughing, sneezing and swallowing. It is the body’s “autopilot.” It also provides pathways for nerve fibers between the higher and lower neural centers. It is also the origin for 10 of the 12 cranial nerves. The 12 cranial nerves enter the brain directly and are not connected to the spinal cord.
The midbrain is the reflex center for cranial nerves III and IV and is involved in eye reflexes and movements. The pons helps regular breathing. It connects the cerebellum with the cerebrum and links the midbrain to the medulla oblongata. The pons is the reflex center for cranial nerves V through VIII. The pons is involved in chewing, taste, saliva, hearing and equilibrium. The medulla oblongata joins the spinal cord at the foramen magnum. It influences heart, breathing and circulation. It’s the center for vomiting, coughing and hiccuping.
The medulla—the most primitive brain structure—controls our digestive, respiratory and circulatory systems. The ponsinteracts with the cerebellum, motor control and respiration. Other structures in the pons control sleep and excitement. The pons also relays information between the brain and the spinal cord.
The basal ganglia is found in the forebrain and consist of structures involved in motor processes. The basal ganglia works along with the motor areas of the cortex and cerebellum for planning and coordinating certain voluntary movements. The basal ganglia is made of gray matter.
The limbic system, or limbic lobe, is involved in the expression of intimate behaviors and emotions, hunger, aggression. The limbic system also screens all sensory messages to the cerebral cortex. It is located deep in the temporal lobe. The limbic system includes these structures: cingulate gyrus, corpus callosum, mammillary body, olfactory tract, amygdala, and hippocampus. The hypothalamus affects body temperature, appetite, water balance, pituitary secretions, emotions, and autonomic functions including cycles of waking and sleeping.
Even though many functions of the brain are very localized to certain areas and parts of the brain, these parts work together as a whole—particularly in learning, memory, and consciousness.
Ventricles are fluid filled cavities in the brain; there are four of them. The ventricles connect with each other and produce cerebrospinal fluid which is a clear, shock-absorbing liquid that is constantly moving. The cerebrospinal fluid cushions the brain, distributes nutrients and collects wastes.
Blood Vessels in the Brain
The oxygen supply for the brain comes from 4 major arteries, two vertebral arteries and two carotid arteries. The two vertebral arteries supply blood to the back of the brain. The two carotid arteries branch and supply oxygen to the front and middle of the brain. The front and back arteries interconnect at the circle of Willis at the base of the brain. The circle of Willis ensures a continuous blood supply to the brain.
Sectioning the Brain
Left and Right Hemispheres
The forebrain consists of two almost symmetrical cerebral hemispheres made up of the cerebral cortex, the basal ganglia and the limbic system. The two hemispheres are divided by the longitudinal cerebral fissure and connected by a massive bundle of fibers called the corpus callosum. The surface of the two hemispheres is covered by a large, but thin layer of nerve cells called gray matter. Because of the area size of the gray matter, fitting it into the skull causes folds. The grooves in these folds are called sulci (singular sulcus), the ridges are called gyri (singular gyrus). The deeper grooves are called fissures. The cortex is a large mass of nerve fibers called white matter. These nerve fibers are highly developed and able to analyze both motor and sensory information.
The left and right hemispheres may look the same, but each side functions differently. Speech and language, reasoning and analysis, and certain communications are on the left side for most people. The left side of the brain sends and receives information to the right side of the body including the right hand. The right hemisphere is concerned with sensory input, auditory and visual awareness, creative abilities, and spatial-temporal awareness—that is what is happening around us moment by moment. The right brain controls the left side of the body.
Each of the cerebral hemispheres is divided into four lobes and are name for the cranial (skull) bones that lie over them:
The frontal lobe extends from the tip of the front of the hemisphere to the central sulcus. The back areas of the frontal lobe specialize in motor functions, including language and voluntary movement; the front areas are involved in learning, planning and other higher psychological processes like our personality and behavior.
The occipital lobe is at the back of the hemisphere and is involved in interpreting visual stimuli, that is, what we see.
The parietal lobes are at the top and outside areas between the occipital lobe and the frontal lobe and is involved in sensory functions of the skin including pain, temperature, and touch. It also interprets size, shape, distance, vibrations and texture. Other areas are also important in cognitive and intellectual processes.
The temporal lobe controls the hearing centers, language comprehension, storing and recalling memories and related areas including some speech centers. Other areas of the brain also affect memory. The front and bottom areas of the temporal lobe are involved in smell and functions of the limbic system.
By Kellie Pokrifka, Member, Brain Injury Association of America Advisory Council
There is so much misinformation regarding brain injury floating around on the internet. Research in this field is progressing every day, and we frequently disprove old theories. It can be difficult to keep up with the latest research, so let’s take a few minutes to dispel some of the most common myths regarding brain injury.
Myth: You can always see brain injury on CT and MRI scans.
CT and MRI scans are looking for brain bleeds, skull fractures, and other acute trauma. Not all brain injuries, and especially not concussions, will appear on these scans. A clear CT or MRI does not eliminate the possibility that you have a brain injury.
Myth: Two years after brain injury, no further recovery can be made.
Many people assert that recovery from brain injury is only possible within the first year or two. We now know that is incorrect. Following the first nine months of recovery, time is no longer an indicator of recovery. What matters after this point is finding the proper therapies for your symptoms. Doing the right activities 50 years post-injury has the same chance of recovery as receiving proper treatment nine months out. Improvements in your recovery are always possible.
Myth: Concussions are not serious.
Concussion is a form of mild traumatic brain injury (TBI). “Getting your bell rung” or “seeing stars” are never things to ignore – they are signs of brain injury. Concussions are described as “mild” brain injury because they not usually life-threatening, but this does not mean they are not serious. While many people will fully recover after two weeks, a percentage of patients will have lifelong symptoms following a concussion.
Myth: Individuals with brain injury don’t think about suicide.
Unfortunately, suicide is not an uncommon occurrence after brain injury. Nearly one in five brain injury survivors admit to suicidal ideation, plans, or attempts in the five-year period following injury. In the general population, that statistic goes down to one in twenty-five. Extreme life changes and organic changes in the brain after TBI can increase the chances of suicide. Because of this increased risk, it is important for medical teams and loved ones to address this subject. Being open and honest about this tough conversation can save a life and help connect your loved one with proper resources. If you need help, you can call the suicide hotline at 1-800-273-8255.
Myth: Only athletes get concussions.
Concussions are not only a problem for athletes; concussions, like other TBIs, can happen anywhere, at any time, and to anyone. TBI is a common result of motor vehicle accidents, falls (particularly in elderly and child populations), military action or blast exposure, intimate partner violence, abuse, gunshot wounds, and other physical trauma.
Myth: If someone has sustained a concussion, you should wake them up every hour for the next day.
There is no need to keep someone awake for 24 hours after a concussion. Sleep is critical for brain injury recovery. If the person has been cleared by a professional for brain bleeds and acute trauma, restful sleep is safe and is crucial for recovery.
Myth: You should not be exposed to any stimulation that may trigger symptoms until you are completely recovered.
It used to be common practice to protect patients with brain injury by placing them in silent, dark rooms for weeks or months until symptoms subsided. However, the “rest and wait” approach is no longer an appropriate recovery plan and can actually worsen symptoms. Many experts even suggest light, controlled exercise within 72 hours of sustaining a concussion. As always, consult your doctor before making any changes to your recovery plan.
It’s a seemingly simple goal, but for Jodi and Cheryl Graham, it’s been nearly 14 years in the making.
This summer, Jodi, 38, hopes to walk one of her friends down the aisle at his wedding. In some ways, it will be the culmination of countless hours spent with physiotherapists, speech pathologists and eye specialists after a 2006 car crash left her in a deep coma with a traumatic brain injury.
In another way, it’s no culmination at all: once the big day’s over, Jodi will still need around-the-clock care, mostly provided by her mother, Cheryl, and their close-knit network of health-care professionals, friends and family.
It’s a reality that hundreds of caregivers face in Ontario each day — and for Jodi’s parents, it’s complicated by the knowledge that their daughter will likely outlive them.
“There’s no end in sight [to the help Jodi needs], which is hard. It’s a nightmare,” said Cheryl, 61.
“It’s hard to sit here and say, ‘This is going to be the rest of my life, trying to help Jodi get her life back. And there are no other options.”
The night of the crash
It was a Thursday night in 2006 when their lives were irrevocably altered.
An avid athlete, Jodi was on her way to soccer practice in south Ottawa when the vehicle she was riding in was T-boned by an SUV. The SUV slammed into the passenger door, right where Jodi was sitting, with enough force to push it in by more than half a metre.
It took 25 minutes for firefighters to free Jodi, then 24 years old. She had glass shards in her face and back, a broken collarbone and, most distressing, severe brain bleeding.
The crash was so violent, Cheryl said, that her daughter essentially suffered the adult version of “shaken baby syndrome.” It left her in a vegetative state, and for a time no one knew if she’d ever emerge.
Eight weeks after the crash, Jodi came home. Her recovery was slow: a foot twitch here, a hand movement there. For five years, she needed a feeding tube to eat.
“I can remember the first few years — I don’t think Cheryl ever slept the full night because she was always on the alert for a noise from Jodi’s room,” said Wendy Byrne, a longtime family friend.
The brain injury damaged Jodi’s eyesight and left her mostly unable to speak, so the family communicated with her by writing large messages on a white board. Insurance money helped pay for modifications to the family home, including a custom-designed bathroom, lower kitchen counters and a more accessible backyard deck.
It also made it easier for Cheryl to quit her job with the federal government and provide Jodi with full-time care.
“She’s made herself do it for Jodi,” Byrne said. “There’s so many pressures. I don’t know how she does it. I really don’t.”
Emotional toll ‘heavier and heavier’
Now, nearly 14 years after the crash, Jodi has progressed to the point where she can communicate with her family using sign language, as well as touch-screen technology that lets her send text messages and emails, and play music.
Her family says she’s slowly relearning how to walk, getting up from her wheelchair a few times each day, while also gradually figuring out how to form words again.
But there’s an increasingly pressing concern: what Jodi’s future will hold when her family’s no longer physically able to provide her current level of support.
Six years ago, Cheryl’s husband, Raymond, also 61, had triple bypass surgery after suffering a heart attack. While he and the couple’s other two adult children pitch in, Cheryl has become Jodi’s primary caregiver.
Cheryl said she’s been getting sick more than she used to, and as the months go on, it’s been getting more difficult to get Jodi in and out of her chair.
Then there’s the emotional toll, which comes with its own weight.
Caregiver burnout is a real issue. And we hear that time and again.– Amy Coupal, Ontario Caregiver Organization
“It gets heavier and heavier as the years go on. And you see everyone else — their lives are moving forward,” Cheryl said.
“There’s so many little triggers, too. Now she’s skiing, I take her skiing. And when I go into that chalet, I think of her before [the crash]. You lose a lot. It just gets more emotional, it does, as the years go on.”
According to a 2019 study published by the Ontario Caregiver Organization (OCO) and health policy think-tank The Change Foundation, more than half of caregivers admit feeling overwhelmed by their responsibilities.
Slightly more than half of the 800-plus caregivers who took part in the study also said they felt anxious or worried, while more than 40 per cent struggled with feelings of frustration.
“Caregiver burnout is a real issue. And we hear that time and again,” said Amy Coupal, OCO’s chief executive officer.
To address that, OCO is preparing to launch a support network that connects stressed-out caregivers with others who are “walking their walk,” Coupal said.
Since last November, they’ve also operated a toll-free support line.
“Often caregivers are not getting a lot of sleep. They’re not looking after their own diets. They’re definitely not exercising. They’re really not doing the things that we all need to do to stay healthy,” said Jacquie Levy, the co-owner of Action Potential Rehabilitation in Ottawa, and part of Jodi’s care team for more than a decade.
“Caregivers themselves get ill, because caregiving is such a difficult job. And so [while] we’re busy worrying about our patients, we have to make sure as therapists we look up and see the caregivers and their needs, too.”
As for parents facing the uncertainty of what will happen to their child after they’re gone, Coupal said it’s important to begin talking about those plans sooner rather than later.
That’s partly why a foundation set up in Jodi’s name has pivoted from simply raising awareness to bringing in money for more residential housing.
The shortage of targeted residential care in Ontario has been a pressing concern for families of brain injury victims, with some telling CBC their loved ones face waits of a decade or more before a bed opens up.
“It’s not if we’re going to die — we’re going to die,” Cheryl said. “So when that time comes, [the concern is] there is no place where somebody like Jodi would fit in.”
It’s Cheryl’s firm belief that had she not left her job to care for Jodi, her daughter would have ended up in one of two places: a long-term care home without proper support, or — due to anger issues exacerbated by her injuries — a locked psychiatric ward.
The family’s dream is to open homes where residents have individual units, similar to her daughter’s current setup, with communal living and cooking spaces, exercise and meeting rooms, plus access to 24-hour-a-day care.
The fundraising is still in the early stages, but Cheryl said they won’t give up.
Nor, she added, will Jodi.
“We recognize every little baby step she takes. And as long as she stays motivated, well, we’ll help her as much as we can.”
About this issue
In this edition, Drs. Corrigan and Dam-O’Connor summarize the current state of knowledge with respect to TBI as a chronic health condition and selected topical articles that present evidence-based and clinically-supported answers for those who wonder how they can be in the group that continues to recover, grow, and thrive. The edition authors discussed the power of resilience and how to build it, strategies for vocational success (not just how to get a job, but how to keep it!), and specific strategies for health self management.
Objective: Although the long-term consequences of acquired brain injury are frequent and diverse, care and support over the longer term is an under-addressed issue. This study aims to identify the perceived needs of people with acquired brain injury and their partners.
Methods: Interviews with four focus groups of people with brain injury (n = 17) and three partner groups (n = 19) were audio- and videotaped, transcribed verbatim and analyzed using inductive content analysis.
Results: Needs were perceived on the intrapersonal, social, healthcare and societal levels, focusing on three themes: 1) Adaptation to changes, including awareness of consequences, acceptance, role changes and dealing with these; 2) Understanding from relatives/friends, professionals, institutions and society; 3) Timely, individualized care, involving information, transition to home, searching for support, peer support and support for partner/family.
Discussion: The variety and complexity of needs show that people with brain injury and their partners need to find a new balance in order to live a fulfilling life despite the consequences of brain injury. The overarching need for continuity of care from the transition to home onwards provides important implications for supporting the process of learning how to live well with brain injury.
Survival rates of people with acquired brain injury (PwABI) have increased in the last decades due to the improvement of acute medical care (1,2). Living with brain injury, many experience problems in the longer-term problems, which are often primarily psychosocial in nature (3–8). They include difficulties with interpersonal relationships, work, leisure activities, personality changes, behavioral problems, cognitive deficits and emotional problems (1,6,9,10). New difficulties may even emerge in the long term due to changing circumstances (6,11), for example, when one loses their caregiver and loses support or when one becomes a grandparent but experiences difficulties with caring for their grandchild. Long-term consequences of stroke not only affect the autonomy and well-being of people with brain injury but also impacts family members, specifically partners, who usually fulfill caregiver roles after the brain injury of their loved one (12,13).
In the Netherlands, different forms of care and support for longer-term problems are available and provided by several disciplines, such as psychologists, medical doctors, social workers and physiotherapists. However, there seems to be a mismatch between the available services and the actual day-to-day needs of PwABI and their families in the long term (14). Unmet needs for PwABI as reported in the literature involve understanding the injury, improving emotional difficulties and stress, activities of daily living, communication and finding employment (6,15–18). In addition, PwABI have difficulty finding and accessing services to support them with these issues (16–19). Partners may have needs in direct relation to the problems of the PwABI, such as coping with behavioral and emotional issues, but they also have needs of their own, including respite from caregiving and emotional and social support (13,15,18).
Many studies on needs covered a time span limited to the first few years after the injury (17,20–22), but there is limited research on longer-term needs of PwABI and their partners residing in the community. Studies on longer-term problems are of a less recent date (15,19). Organization of care is subject to continuous change, with an increasing importance being placed on the perspective of the service users. According to the 2018–2030 Action Plan for Stroke (23), more research is necessary to elucidate the needs of patients and carers in order to guide current innovations in the provision and organization of care services. Therefore, the current study aims to complement the existing literature by qualitatively exploring the perceived long-term needs both of PwABI and of their partners. In this study, discussions on care needs were embedded within topics of living with brain injury or with a partner with brain injury to elucidate day-to-day needs and corresponding health-care needs.[…]