Latest news with #SamanthaStaab
Daily Mirror
04-08-2025
- Health
- Daily Mirror
‘Brain condition affecting every part of my body means people think I'm drunk'
Samantha Staab was first diagnosed when she was seven and underwent deep brain stimulation at nine to try treat the condition 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.'
Daily Mirror
04-08-2025
- Health
- Daily Mirror
'Rare health condition means people always think I'm drunk - but I've re-learnt to walk'
Samantha Staab, from Florida, US, is raising awareness about a rare condition which stopped her from walking. After spending years in and out of a wheelchair, she underwent brain surgery A nurse who had brain surgery to re-learn how to walk again says she finally knows what "it feels like to stand up straight" - but people still mistake her "wonky" walk for being drunk. Samantha Staab, 24, from Jacksonville, Florida, was diagnosed with the neurological movement disorder, generalised DYT1 dystonia, when she was just seven-years-old. The condition causes the muscles to contract and twist and also leads to involuntary movements which the person can't control. The ER nurse compared the deliberating condition to Parkinson's and said she suffers from constant cramps. Speaking about the condition, she said: 'It is almost as if you have a cramp that lasts 24/7. 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.' It comes after the NHS warned a mouth symptom could be a life-shortening disease. When she was just nine years old, Samantha 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." She added: "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." 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.'
