Survivor or Caregiver
TBI One Love Survivor Molly Parker
Hello, my name is Molly. When I was 26 years old and had my dream job as a physical therapist. In Feb 2011, I was standing on a crowded street corner when a cab driver fell asleep and drove into the crowd. I remember feeling lucky afterwards that I'd "only" sustained a concussion. I felt like I was hit by a car of course, but assumed my injuries would subside with time.
Over the next few weeks I had increasing headaches. They ended up being severe/constant for many years (mostly gone). I struggled to hold it together amid a cluster of debilitating symptoms while the left side of my body weakened. I was in an extraordinary amount of pain and rarely slept. Despite this, I looked normal and spend the next several years going from doctor to doctor, trying to convince them something was wrong. I mostly heard things like:
-I'm just lazy or depressed
-I don’t actually want to get better
-No its fibromyalgia
-No its MS
-People lose their limbs but they just try and they get better
-You’re lucky, you could have been really hurt
I did everything wrong. I put on more hours at work and tried to push through severe symptoms into crashes almost daily. Having just moved for work, I had very little support or hope. The people around me could not understand something was wrong. This still frustrates me. I understand it is difficult to relate or be able to fully explain a brain injury, but I struggle to understand how people were so unaware that something was wrong at all. I verbalized it constantly, went to countless doctors’ appointments, lost my job, and went from being active to barley being able to walk… clearly something was wrong.
At roughly the 3 year mark, I went from bad to worse. I continued to lose the ability to meet my basic needs. My fatigue was severe. I could barely feed/dress myself. My cognitive crashes lasted 2 weeks. I felt disembodied. I had heavy dizziness, nausea, headaches, pain, memory problems, visual processing problems, what we think were seizures, difficulties in crowds and I struggled to read, write or drive.
Eventually I had to move back home to Spokane where my parents took care of me for the 3.5 more years. We went to 3 appointments per week and I tried every treatment I could think of.
Slowly but surely I started treatment directed at my symptoms. Piece by piece I began to retrain function. This was very slow and frustrating and has finally begun to pick up speed. About 5 years in my vestibular and visual symptoms stopped responding and after a few months we realized I had a sensorimotor disorder in every muscle in my body, including my eyes, that would need to be treated before I could continue to progress with the remaining symptoms. I finally found care for that around 6 years in a serendipitous meeting with a movement disorder physical therapist at a conference, who would help me make HUGE progress.
I got worse for years. I didn’t have the support/treatment to be able to start to dig myself out for almost 4 years. Had I known then what I know now, my recovery would have been weeks to months. I am an example of a poorly managed concussion and the devastating effects it can have on someone’s life.
Over the past 7 years I have seen over 70 healthcare providers. To this day many concussion care basics I learned on my own from taking courses and reading research. Had it not been for my professional background I may have believed doctors when they said concussions are not treatable after 2 years. They are extremely treatable when managed properly from the get go. Post concussive is treatable no matter how many years out someone is. The majority of my progress happened after 5 years.
Looking back I don’t think someone mentioned post concussive until I was 2 years in. I didn’t met, talk to or even hear of anyone else like me for 3 years. I didn’t have basic support or objective testing for 4 years. I didn’t go to my first comprehensive concussion clinic until 5 years. I didn’t find help with my sensorimotor disorder for 6 years and I didn’t know the severity of my autonomic dysfunction for 7 years. This was not for lack of trying. I was consistently seeking care and verbalizing my brain injury the entire time.
Fortunately, I have FINALLY figured out the treatments I need to get my life back. I ended up with full body dystonia and a complicated case of post-concussion syndrome.
I am currently finished with my movement disorder recovery with the exception of my eyes and face. I am seeing a functional neurologist for the remainder of my movement disorder and autonomic dysfunction. After which my vision and vestibular system can finally respond to the rest of treatment. Theoretically I can make a full recovery. I still have a ways to go but I am hopeful for a second chance at life.
Cheers to the homestretch.