‘Brain condition affecting every part of my body means people think I'm drunk'
Samantha Staab is learning how to walk and talk again at the age of 24 after undergoing a new procedure to hopefully treat the condition that leaves other people assuming she is just drunk. The Florida native was first diagnosed with the neurological movement disorder generalised DYT1 dystonia when she was seven years old.
It is usually an inherited condition that starts with symptoms in one limb before spreading to other body parts. It causes tremors, pain, difficulty with coordination and normally affecting people before the age of 20.
Samantha compares the rare condition to Parkinson's or having cramps 24/7 as it causes her muscles across her entire body to repeatedly twist and contract involuntarily. She told NeedToKnow: 'It can impact any part of your body from your vocal cords to your limbs to your torso.
'For me, everything is affected. It first affected my left leg and then progressively got worse. Within a week I was unable to walk and was wheelchair bound. It also affected my hands specifically my right hand so I had to switch to write left-handed.'
At nine years old, Samantha underwent deep brain stimulation to implant electrodes into her brain tissue in hopes of treating the condition. The surgery connected wires from her brain to a battery in her abdomen where it was triggered by electricity to help stimulate her movement and speech.
She continued: 'I've had to adapt to new ways of doing everyday things – my left hand is stronger so I normally do things with my left now. My (new) walk is wonky – I walk with a limp as well as a pelvic collapse, and most people associate this with me being drunk so I get a lot of comments such as 'That girl is hammered' or 'Take her home and get her water'.
'People just assume things without asking which is very frustrating. Even bartenders will be like 'She's not allowed in to this bar' when I am completely sober and I have to sit there and explain that I have dystonia.'
'Although some days are very tough and people stare at me or think I am drunk based off of how I walk, the perspective on life it gave me is something I would never trade.'
It took Samantha five years to re-learn how to walk and talk properly. Now, more than a decade later, the ER nurse has had the surgery repeated as doctors wanted to replace the battery and move the wires in her brain to better target the right areas.
She said: 'I felt overwhelmed but knew it would turn out better in the long run. I also had high hopes that I would come out of this stronger than I ever was.
'I knew with the new placement that, in the long run, I would be able to walk straighter and do more things. It put me out of work for a few months because of having to retrain the brain to walk.'
After the surgery, Samantha faced some frustration as she was back in her wheelchair, unable to go to gym, walk, talk or stand up to brush her teeth. It even affected her sleep as her left foot and leg 'would not stop shaking'.
Determined to stay positive, and with some input from the experts, Samantha persevered through her recovery and has now made it out of her wheelchair for the second time in her life.
She added: 'I will walk better than I ever have in the past due to the new placement of the leads and have already seen an amazing improvement in the strength of my torso and my legs. It is all about retraining your brain how to do something as simple as take a step.'
The nurse is not under any illusion that this will be a cure for her condition and she fully understands that the chances of her ever walking perfectly are minimal, but for now the 24-year-old knows what its like to 'stand up straight'.
She added: 'I am still in physical therapy three times a week and have programming which is where they alter my settings about once a month. I also go to the gym daily and try new workout classes such as hot pilates or reformer to activate new muscles that most people don't even think about using but help with walking.
'I have a long road ahead of me, but I'll come out stronger than ever.'
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