"Tiefenhirnstimualtion" THS (DBS) Selbsthilfeorganisation Dystonie-und-Du e. V.
Dystonie-und-Du e. V. Selbsthilfeorganisation
[{'start': '31.225', 'end': '31.736', 'text': '[Music]'}, {'start': '31.736', 'end': '36.240', 'text': '[Music] Today is the\nannual conference of Dystonia and'}, {'start': '36.240', 'end': '43.840', 'text': 'you. Dystonia and you is a very important\nself-help group for patients with dystonia.'}, {'start': '43.840', 'end': '50.560', 'text': 'We have a full program today with\nexcellent scientific presentations with a'}, {'start': '50.560', 'end': '57.800', 'text': 'high level of educational content for everyone involved, questions\nand answers for those affected, and we are pleased that'}, {'start': '57.800', 'end': '63.320', 'text': 'the event has\nstarted very well. We will continue this until this'}, {'start': '63.320', 'end': '70.160', 'text': 'afternoon and will also have a\nnice social part in the evening.'}, {'start': '70.160', 'end': '74.680', 'text': 'We have a wide spectrum here that we\nmay also see with the'}, {'start': '74.680', 'end': '82.040', 'text': 'videos from those affected, which essentially depicts the entire spectrum\nof dystonia. These are patients who'}, {'start': '82.040', 'end': '89.280', 'text': 'have dystonia in their eyelids,\nblepharospasm patients who have dystonia in the'}, {'start': '89.280', 'end': '94.760', 'text': 'neck muscles and have developed torticollis, as it is\ncalled. We also have severely affected patients who are'}, {'start': '94.760', 'end': '102.200', 'text': 'disabled and require a wheelchair\nbecause they have generalized dystonia.'}, {'start': '102.200', 'end': '107.920', 'text': 'So the entire spectrum of what is affected can be\nseen here with the patients today.'}, {'start': '107.920', 'end': '114.640', 'text': 'We hope and wish that we\nhave a good event. Yes, good day. I am'}, {'start': '114.640', 'end': '122.080', 'text': 'Heide Rutten, obviously also affected\nby cervical dystonia. I have probably had the illness'}, {'start': '122.080', 'end': '127.880', 'text': 'for a very long time, although\nit became more apparent about five years ago when my'}, {'start': '127.880', 'end': '134.560', 'text': 'head started to wobble violently. I used to\njust have an internal vibration that'}, {'start': '134.560', 'end': '139.680', 'text': 'my physiotherapist always felt. And\nI have a skid ridge that goes in this direction.'}, {'start': '139.680', 'end': '145.240', 'text': "I've had it since I was maybe 10 or 12\nyears old. It always came out at the hairdresser"}, {'start': '145.240', 'end': '149.560', 'text': "when he says please hold your head straight\nand you notice it just doesn't work or it's"}, {'start': '149.560', 'end': '156.680', 'text': "very difficult. I have problems in everyday life\nbecause I'm in customer service and do"}, {'start': '156.680', 'end': '162.800', 'text': 'a lot of computer work and have been on sick leave since May\nbecause I always tried to'}, {'start': '162.800', 'end': '169.080', 'text': "carry on working but it wasn't possible anymore because I'm\nvery exhausted. The wobbling uses up a"}, {'start': '169.080', 'end': '173.920', 'text': 'lot of energy. That means sometimes you have to\nlie down after two hours and then I fall asleep'}, {'start': '173.920', 'end': '182.480', 'text': 'straight away. My support measures are a\nGreat physiotherapist and everything to do with exercise.'}, {'start': '182.480', 'end': '187.840', 'text': 'I try to go for walks as much as possible, and even'}, {'start': '187.840', 'end': '194.560', 'text': "run downhill, even more so. For me, that's the key to\ndealing well with this illness in the long term."}, {'start': '194.560', 'end': '202.240', 'text': "My name is Jürgen. I come from Berlin. I'll be\n61 this year. I have dystonia."}, {'start': '202.240', 'end': '210.400', 'text': "Dystonias are broken down into numbers, among\nothers, for me it's number 6. It's an"}, {'start': '210.400', 'end': '222.920', 'text': "inherited form of dystonia, it appeared during puberty,\nand I've already tried a lot of things,"}, {'start': '222.920', 'end': '233.800', 'text': "with tablets and botulinum toxin,\nand now it's the brain step."}, {'start': '233.800', 'end': '243.560', 'text': "But I'm very scared that\nsomething could go wrong. Hello, my name is"}, {'start': '243.560', 'end': '251.520', 'text': "Kim Bötscher. I'm 50 years old and have had\ndystonia since I was 14. It"}, {'start': '251.520', 'end': '258.600', 'text': "all started with writer's cramp.\nThen I got torticollis and a tremor in my right arm."}, {'start': '258.600', 'end': '265.000', 'text': 'And because of dystonia and you,\ntwo and a half years ago I dared to do a deep  To'}, {'start': '265.000', 'end': '271.360', 'text': 'have a brain stimulator installed\nMy limitations are not immediately apparent'}, {'start': '271.360', 'end': '277.920', 'text': 'and the illness is still within\nme and the deep brain stimulator also has to be'}, {'start': '277.920', 'end': '285.240', 'text': 'continually adjusted to new circumstances\nSo at the moment I am having a bit of'}, {'start': '285.240', 'end': '292.880', 'text': 'trouble speaking My legs are sore but you have to\nhave a lot of guts and'}, {'start': '292.880', 'end': '300.080', 'text': 'go into the reflexes and then\nfocus again in order to be able to carry on with life well'}, {'start': '300.080', 'end': '307.000', 'text': 'So it is not just the clinical picture of\ndystonia that is unknown I also often hear'}, {'start': '307.000', 'end': '314.120', 'text': 'about deep brain stimulation Oh no, what\nall there is And my biggest problem is'}, {'start': '314.120', 'end': '319.880', 'text': 'that people do not see my limitations and my\npain and I always have to'}, {'start': '319.880', 'end': '325.840', 'text': 'fight to be recognized when I cannot do what\nI would like to do.'}, {'start': '325.840', 'end': '332.600', 'text': 'Yes, I have a DBS because I have dystonia.\nI also have bleverospasm and'}, {'start': '332.600', 'end': '340.280', 'text': 'I have had it since 2009 and I am regularly\ntreated with botulinum toxin every 10 weeks. Yes,'}, {'start': '340.280', 'end': '344.440', 'text': 'the  Dysonia is really limiting me,\npainfully, because I have the feeling that'}, {'start': '344.440', 'end': '350.520', 'text': 'my head is sitting on my shoulders and my neck is\nmissing in between. And this pain is often'}, {'start': '350.520', 'end': '357.400', 'text': 'very severe. My name is, as\nI have just shown, I am 44 years old.'}, {'start': '357.920', 'end': '367.840', 'text': 'I have been in this DJD for four\nyears. They support me well by'}, {'start': '367.840', 'end': '376.120', 'text': 'advising me and giving me many opportunities to\nexchange ideas. For me, it is a very, very'}, {'start': '376.120', 'end': '381.840', 'text': 'difficult situation where I cannot speak, hear,\neat or drink normally.'}, {'start': '381.840', 'end': '390.600', 'text': 'It is really always a barrier to\ngetting along. Yes, my name is Adib Saberit.'}, {'start': '390.600', 'end': '399.000', 'text': 'I am a neurologist and I initiated IAB, which is the\ninterdisciplinary working group for movement disorders.'}, {'start': '399.000', 'end': '409.800', 'text': 'Yes, to improve knowledge about\nneurological movement disorders.'}, {'start': '409.800', 'end': '415.680', 'text': 'And our vision is that it will become hip to\ntalk to each other as equals,'}, {'start': '415.680', 'end': '423.920', 'text': 'to talk to each other, to learn from each other and, ultimately, to work\non the therapy of neurological movement disorders'}, {'start': '423.920', 'end': '431.880', 'text': 'and to improve it. So my name\nis  Ufer Aten Uh, I was born on April 13, 1967'}, {'start': '432.440', 'end': '444.000', 'text': "Uh, and I live in Bremen and work in IT\nand uh, yes, I've had"}, {'start': '444.000', 'end': '453.240', 'text': 'deep brain stimulation since the end of 2021 from one of the three\nmanufacturers available in Germany and'}, {'start': '453.240', 'end': '459.000', 'text': 'unfortunately I only\nfound out about deep brain stimulation very late. I'}, {'start': '459.000', 'end': '463.760', 'text': 'probably would have done it much earlier otherwise.\nWell, I saw back then that it'}, {'start': '463.760', 'end': '470.960', 'text': 'was a technology that was actually already 10 years\nold. Uh, it is indeed associated with a certain'}, {'start': '470.960', 'end': '477.080', 'text': 'risk, but I\nactually talked to the doctors back then and I'}, {'start': '477.080', 'end': '483.400', 'text': 'also looked into it myself\nand I think the risk is really acceptable and'}, {'start': '483.400', 'end': '489.480', 'text': 'relatively low. So not like with a\ntonsillectomy or an appendix,'}, {'start': '489.480', 'end': '495.240', 'text': "uh, I'm also glad that I've\nmet more people through the support group"}, {'start': '495.240', 'end': '500.800', 'text': "and I'm trying to pass on what I've learned\nbecause I think that's"}, {'start': '500.800', 'end': '505.880', 'text': "important because there's simply information that\nno doctor can give you. No doctor can give you either."}, {'start': '505.880', 'end': '512.080', 'text': 'Because these are experiences that you\ngain yourself. The older you get, the more difficult'}, {'start': '512.080', 'end': '518.920', 'text': "it becomes to find a setting that gets the maximum out\nof the device. It's not"}, {'start': '518.920', 'end': '524.320', 'text': "like you just set something and it\nworks straight away. It's just that. It"}, {'start': '524.320', 'end': '533.760', 'text': 'usually takes days to several weeks\nuntil a setting takes effect so that you'}, {'start': '533.760', 'end': '540.680', 'text': "have a noticeable effect. I definitely do\nn't regret it and personally,"}, {'start': '540.680', 'end': '546.520', 'text': 'if a doctor agrees, I\nwould really always recommend doing it.'}, {'start': '546.520', 'end': '552.000', 'text': 'And the earlier the better because the earlier you have it done, the\nsooner you can train your brain or'}, {'start': '552.000', 'end': '556.160', 'text': 'the brain for it and the\neasier it is with the setting.'}, {'start': '556.160', 'end': '562.600', 'text': 'So in adolescence and young adulthood,\nit happens very quickly.'}, {'start': '562.600', 'end': '567.560', 'text': 'The older you get, as I said, it gets more\ndifficult. Then it can sometimes'}, {'start': '567.560', 'end': '575.040', 'text': 'take a few years until you have a setting\nthat works relatively well. After the'}, {'start': '575.040', 'end': '580.440', 'text': 'operation with the deep brain stimulation,\nlife has become considerably better.'}, {'start': '580.440', 'end': '586.480', 'text': "Compared to before,  There\nwere crises or cramps, today it's completely different."}, {'start': '586.480', 'end': '592.240', 'text': 'As Juda already said, we can go\nskiing, swimming, cycling together on holiday'}, {'start': '592.240', 'end': '599.120', 'text': "or even when we're in Austria, hiking,\nnot long distances, spending"}, {'start': '599.120', 'end': '605.560', 'text': "hours in the mountains but covering longer distances\ntogether. So it's"}, {'start': '605.560', 'end': '613.040', 'text': 'gotten considerably better thanks to the deep stimulation. Yes, and\nI would like to thank my family and my boyfriend from the bottom of my'}, {'start': '613.040', 'end': '638.880', 'text': "heart for supporting me so well,\nbecause relatives shouldn't be forgotten."}]