TBI One Love Survivor Molly Parker

June 19, 2018

 

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

-It's psychological

-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.

 

 

~Molly

 

 

 

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