The Short Story
So Many Concussions
(Please keep clicking Read More (bottom left) until the whole story opens up!)
Five years ago, Emily Ottinger’s life took a terrible turn when she got her first concussion. Since that first injury, Emily has averaged two concussions per year (once you have one, there will be more...), and has spent most of her life struggling with the crippling acute symptoms of concussions (or Traumatic Brain Injuries [TBIs]), as well as the ever-present and exhausting symptoms of Post-Concussion Syndrome (PCS).
This year, just as Emily transitioned into adulthood and her PCS symptoms began to increase, she learned of a concussion treatment center that has a tremendous track record for helping folks like her get their lives back, and she is beyond excited to get started. Cognitive FX is based in Utah and is a 1-week intense program that will tailor their many hours of therapies to best work with the specific areas of damage in Emily’s brain, as well as the inefficient workarounds that she has developed over the course of her injuries. Their patients average a 60% reduction in symptoms, often much more.
For Emily, 60% better would be a dream come true.
Cognitive FX treatment is expensive. This is where we, the generous and loving tribe, come in. If we are able to raise $16,000, Emily will be able to have a chance at getting her life back without incurring crippling medical debt at only 18.
The Long Story
The Long and the Short of it...
How the money raised will be spent
More about Cognitive FX
Other ways to donate
Emily’s Story (The Long Story):
In the winter of 2002, wee little Emily Grace came into the Wisconsin world, bright-eyed and delighted by everything around her.
Let's take a quick 2-minute photo peek into the first 12 years of Emily...
(Don't see the video? Click here: Wee Em Video )
When Emily was 12, she and her sisters joined the local YMCA Winter Swim Team at the Elk Mound High School Pool, near their hometown of Colfax. Emily immediately fell in love, and found out just how much of a physical kid that she truly was. She thrived in the pool, thrived pushing herself hard and beating her own records again and again.
When winter turned to spring and the Winter Swim Season came to an end, Emily grieved the 10-12 hours per week that she wasn't in the pool; she couldn't wait for Summer Swim to begin. In June, Emily dove in at Fairfax Outdoor Pool in Eau Claire, thrilled to be in the water again, swimming hard.
During the first week of practice, Emily missed her backstroke count (new pool, no flags for count cue) and slammed into the wall.
What followed was roughly six weeks of absolute quiet and misery. She couldn't swim, or run, or even walk beyond the necessary. She wasn't able to watch a show, do her schoolwork, work on her art, play cards, or even read a book. Concentration was impossible and pain was relentless. Even listening to audiobooks was a chore.
For a few days, Em tried to watch practice from the deck. Soon, she just stayed home.
It took six weeks before life began to improve, but Emily was still extremely sensitive to light and unable to look at screens for more than a few seconds. She was still plagued with headaches and lightheadedness. Words sometimes still swam on the page, as well as in her head. Concentration only worked in short doses. Sunglasses and baseball caps became a regular part of her wardrobe.
Outside, inside, everywhere the shades and brims...
Yep, even on stage. Especially on stage. Stage lights are the worst!
Late that winter, just when symptoms were starting to fade a little, Em found herself on the receiving end of a speeding piece of lumber, as a friend fell off of wooden stilts and sent them careening backward into her. Life rewound 6 months, and she was back in a dark room waiting for the pain to stop.
From that point on, Emily's head was like a magnet for collisions. Over the course of the next few years, her brain never had time to heal, and even the smallest bumps would send her back down into full-blown symptoms. She was conked with everything from elbows to pillows, from giant hula hoops to a rogue foosball that inexplicably exited the table and found her in a crowd like an Emily-seeking missile.
Sometimes she'd have a small regression. Many times the regressions were far from small. Sometimes she'd suffer for a week. Often months. But even as the big symptoms slowly lessened each time, Em's head injury was never far in the background.
Throughout her high school years, Em has had to limit her access to screens incredibly, often eliminating them altogether for weeks or months, as her brain was rarely able to process the blue flickering light without negative effect. She relied on her mom to be her secretary, reading and writing emails and messages to her friends, typing her essays, researching anything she wanted to know about. She has been tied to analog learning, even as her family and peers were wading deeper and deeper into digital opportunities and ways of life. Every few months, she (aka her mom) would send a message to her friends again, notifying them that, once again, she would only be reachable by phone. Because, once again, she'd suffered another concussion.
Throughout this time, Emily has also been limited in the physical activities that she so enjoys, and that fuel her mind and body, thanks to the pain and regression that they often bring. Running could trigger headaches, karate practice was almost always tackled in slow motion, swimming couldn't be pushed. Even hikes and paddling might be too much. And every single activity has had to be weighed on the scale of how likely she might be to get conked on the head, whether due to decreased reflexes or hyper-sensitive and as-yet unhealed brain tissue, or their frustrating combination.
In recent years, Emily's mind and body have struggled to regulate, and she has developed new and more widespread symptoms. She's struggled mightily with anxiety and depression, as well as strange physical anomalies. Doctors have tried to diagnose her with Reynaud's and other auto-immune disorders as her extremities discolor and swell, but no diagnosis fits. They are left befuddled and she is left in the gray and cloudy area of Post-Concussion Syndrome.
Since Em has grown up and moved away from home, just this year, her range of Post-Concussion Syndrome symptoms has grown with her. While it has been some time since her last bump to the head, she's recently developed TBI-related visual trails that show up randomly and can stay with her for hours. Artificial lights (such as screens) now give her not only headaches, but mood-swings as well. She continues to fight inexplicable auto-immune issues such as her hands and feet swelling to the point of having to remove rings and sandals to maintain circulation. Emily's memory and cognitive functioning have suffered, as she struggles more and more to remember the words that she was about to speak, and keep clear her plans for the day.
Emily is now 18, and doing amazing, despite everything she is up against. She is adulting like a pro, and navigating like a champ, but it is increasingly frustrating to be always hindered by her collection of TBIs and their myriad symptoms. She is still overly cautious, to the point of fear and anxiety, about every activity in her life. She is still riddled with mysterious and worrisome pains and disturbances and only watching them increase with time. And she still needs help from home when researching everything from tent purchases and concussion clinics to job opportunities and her own housing needs.
In the face of adversity Em has blossomed into an incredible young woman, out there in the world, finding her place. In May she spread her wings, and headed up to the Gunflint Trail, on the edge of the Boundary Waters Canoe Area Wilderness (her favorite place), to work for Clearwater Historic Lodge and Outfitters . Since she's been up north, she's grown tremendously, she's had some excellent solo canoe adventures, and she's made the time to hike every trail on the Gunflint, and then some. She plans to stay on the Gunflint through the winter, and see what winter in the Boundary Waters looks and feels like under thick blankets of snow.
Nothing will stop this one, but regaining her health could sure go a long way to helping her realize her potential!
The Long and the Short of it...
Life is rough, and we are all dealt different hands. Sometimes we need to yank ourselves up by the bootstraps and make the most of what we've got. Emily has been doing just that for over 5 years, since she was 13 years old.
But sometimes there are ways to make things better. Sometimes there is a chance at a different future, a much brighter and more promising future. Cognitive FX is offering Emily a treatment that very well may give her a new lease on life. She could, in a few weeks' time, remember what it is like to live without pain, without dizziness, without being limited at every turn. Let's help her at that chance.
It's time. Let's help Emily get her life back!
How the money raised will be spent:
The cost of Cognitive FX treatment itself will be $10,000, as she's been accepted for the 1-week program.
According to Cognitive FX's estimates and our own research, it will cost around $5,000 for the incidentals surrounding treatment, including flights, car rentals, hotels, and meals for Emily and her support person. Her therapies will be rigorous and demanding, and it is recommended that she have someone with her for her appointments and scans, and to take care of her food and transportation after their very long therapy days.
We've reset our goal to $16,000, to reflect her acceptance into the 1-week treatment at CFX (we left a small buffer in there for underestimates on the incidentals!). In the event that more money is raised than is needed, the remaining funds will be kept in savings should Emily need further treatment in the future.
The only reason patients return to CFX for another round of therapy is if they suffer another TBI. The hope is, that with Emily's brain actually learning how to heal, and with the decrease in symptoms and increase in cognitive functioning, she would be much less susceptible to another concussion. Regardless, any extra funds would be kept in savings for at least a few years, until Emily is more independent and able to handle the full weight of her medical needs.
At that time, if Em is still in good shape and not in need of further treatment, she promises to put the money to good use, maybe take it on some adventures, and hopefully find a way to help someone else to receive the treatment that changed her life!
What about insurance?
Highly speculative at best. There may be some coverage through our High Deductible Health Plan, but as per usual, insurance will not confirm coverage until they receive a bill. Even best-case scenario, insurance would only cover a small portion of the costs Em will incur.
* For those interested, scroll all the way to the bottom for more nasty insurance details. *
More about Cognitive FX:
There is so much we need to learn about Traumatic Brain Injuries. The brain is mystifying in it's complexity, and research into brain injury and healing is even more dizzying. Thankfully, the folks at Cognitive FX are leading not only the research, but also leading the field in patient recovery. Pretty exciting stuff!
Treatment at CFX will include:
- 2-3 fNCI (functional NeuroCognitive Imaging) scans, as well as structural brain and cervical MRIs if needed
- 1 week of individualized treatment and rehabilitation of the damaged parts of Emily's brain. There will be many different kinds of therapies, including occupational, vision, cognitive, neuromuscular, sensory-motor, and psychotherapy, as well as constant guidance in the development of a post-treatment self-care plan.
- Post-treatment support phone calls and meetings.
Overall, CFX patients see an average 77.5% increase in cognitive function and 60% reduction in PCS symptoms, with many seeing even more impressive results. The potential is awesome and heartening.
If you'd like to learn more about Cognitive FX, their website is packed with more information than you can digest. Take a peek: Cognitive FX
The 'Donate now' button awaits!
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Other ways to donate? Sure!
In fact, more money goes to Emily if you donate OUTSIDE of GoFundMe!
The amount raised so far will be updated manually by me (let me know if you'd like me to include your name or leave you anonymous!
Old school? Feel free to send a good old paper check:
E9550 945th Ave.
Colfax, WI 54730
Please include 'For Emily!' in the memo!
If you prefer PayPal or Venmo, that works, too:
PayPal: paypal.me/KristaOttinger (PayPal is clickable)
Venmo : @Krista-Ottinger (Venmo is clickable)
Please include 'For Emily!' in the notes!
* More Nasty Insurance Details:
Cognitive FX is Out of Network, and with those coverages, the most Emily could be reimbursed for is $2250 for the $10,000 1-week program. This is assuming 100% coverage, while the actual coverage is likely to be much less than that. In talking to a long line of representatives from our insurance company, we’ve found that according to our 2020 plan, Emily’s initial scans should be covered at our deductible and coinsurance limits. Later scans may or may not be deemed necessary. As for the therapies during her week, many may be excluded, depending on how they fit the coverage criteria. For instance, vision therapy is only covered for a singular diagnosis, Convergence Insufficiency. Whether Emily will hit that exact diagnosis is not known until we get there. There are many exclusions, and try as we might, we can’t predict coverage with any accuracy. Because of this, and because our 2021 plan (Emily will not go to Utah until 2021) could change considerably, we’ve built the GoFundMe based on $0 help from insurance. Any reimbursements from them would be surprising (and miraculous) gifts!
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- hannah bacon
- Liam Sullivan