A woman who had brain surgery to relearn how to walk and talk again after a rare condition caused her constant cramping says strangers now constantly think she is drunk.
Samantha Staab, 24, was diagnosed with a neurological movement disorder when she was just seven years old.
Generalised DYT1 dystonia causes the muscles to contract and twist, causing repeated movements that aren’t under the person’s control.
Samantha compares it to Parkinson’s and has suffered for 17 years.
“It is almost as if you have a cramp that lasts 24/7,” Samantha, an ER nurse from Jacksonville, Florida, told Need To Know.
“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.”
When she was just nine years old, she underwent DBS, known as deep brain stimulation, which involves making small holes in the skull to implant the electrodes into brain tissue.
While she was “very nervous”, the treatment helped hugely and she was able to get out of the wheelchair, and relearn to walk.
She said: “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.”
In childhood at nine years old, she had surgery to place wires – called leads – that connect her brain to her abdomen, where a battery is.
Electricity is sent from the battery to her brain to help stimulate it to walk, talk and move better.
She was initially left in a wheelchair, and it took five years to re-learn how to walk, or even talk properly for a period, with her muscles struggling to allow her to annunciate words.
In April this year, Samantha had the surgery repeated, as doctors felt a newer battery would better target the right area in the brain.
She said: “I knew that by placing new leads in my brain, I would be back in a wheelchair.
“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.
“I was awake for this brain surgery and was able to watch it on a little TV in front of you.
“I thought it was cool to be able to watch them operate on your brain.”
But after the surgery she was unable to walk and her talking was affected “tremendously”.
She said: “I was back in the wheelchair and frustrated because I could not go to the gym or even stand up to take a shower or brush my teeth.
“My left foot and leg would not stop shaking so sleep was also affected.
“I am so used to my normal routine of going to the gym every day and working as an ER nurse.
“However, I had to keep a positive mindset.”
And now, after a lot of hard work and support from experts, she is out of her wheelchair and on the road to recovery.
Samantha said: “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 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.
“I do not walk perfectly and probably never will until we find the cure, but my core is collapsing much less and I know what it feels like to stand up straight.
“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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