I would like to say a big big thank you to everyone who donated towards my GoFundMe. Not only did I manage to get this wheelchair with the money, but because I have been blacking out so much recently and having more Dystonic episodes, I have required head support and today my mom found a pharmacy who could provide me with a headrest that could easily attach to my wheelchair. Now I have more comfort and support and I couldn't be happier. So please know just how appreciative I am for all your help. Without your help none of this would have been possible❤💕 #dystonia#dystoniamovesme#dystonic#dystonisepisodes#wheelchair#hotwheels#wheelies#headrest#mywheels#hemiplegic#hemiplegicmigraines#dystoniawarrior#warrior#positive#positivethoughts#seizures#blackouts#neurological#neurologicaldisorder#movementdisorder#episodes#newwheelchair#gofundme#thankful#raisingmoney#happy
3 0
There are many times when I have to fight with my body to get it to do what I want and not just what it feels like doing. Yesterday I had to use two hands to pick up one blueberry and today I had to fight with left arm that kept trying to elbow the man next to me on the train. It did manage to get one sly elbow in... oops 🙈😂 Any others out there who have badly behaved muscle ?@kreationsbykittles I know you will have a story to share!! #livingwithajerk . . . . . . . #inspire #muscles #dailychallenges #neurological #dystonia #myoclonus #dystoniamovesme #enablenotdisable #yoocandoanything #disabilityawareness #movementdisorder #cp #invisibleillness #fighter #strength #fatigue #work #simplethings #pose #coffeeaddict #cerebralpalsy #nervoussystem #australia #blog #nevergiveup #melbourne #connect #diversity #parkinsons
81 1
Finally got some things rolling in the dystonia nightmare. Saw new dr at Uci, and although took over 5 months I was approved for Genetic testing to see wtf I have. I'm a medical mystery and she's using a team of neuros to help. After over 20 years of this crap I cant wait to see what's going on in this brain and body. I hope my fellow dystoniacs can get genetic testing approved. I honestly don't know how it got done, but I'm lucky it did 👌🏼👍🏼
15 9
✩ 5 0 0 ✩ J A H R E ✩ S C H Ä F F L E R T A N Z ✩ Die Schäffler tanzten aus der Reihe ... ◕‿-。 #Dys#DystoniaenessfliesaroundtheWorld #Dys#DystoniefonlineeV #Dystonia #Dystonie #Neurologie #Neurology #Bewegungsstörung #Movementdisorder #DBS #THS #TiefeHirnstimulation #DeepBrainStimulation #Muenchen #Munich #Wittelsbacherplatz #500JahreSchäfflertanz #Schäffler
23 0
36 years old and now Im stuck with one of these...#painprincess #movementdisorder #fibromyalgia #iwantmylifeback
9 1
Only one week left until Dr. Kempinski’s Parkinson’s lecture 🌟 if you have never heard Dr. Kempinski speak you are in for a treat 👨‍⚕️ his specialty and passion is working with the brain 🧠 and he is one of the most knowledgeable sources for this kind of approach 💫 #elitehealthga #drkempinski #atlanta #smyrna #vinings #functionalneurology #functionalmedicine #brainhealth #par#parkinsonsase #parkinsons #pd #dementia #tremors #movementdisorder #alzheimers #alzheimersawarness #parkinsonsawareness #neurodegenerative #neurodegenerativedisease #neurodegeneration #neurology #neuroplasticity #healing
39 1
I remember taking this video in August 2016. I posted it all over the internet, asking for someone to diagnose me. Months later I would learn all about cervical dystonia. Still later, I would finally find my cure in physical therapy. I post videos on YouTube about my physical therapy. I hope to help others manage their dystonia. . . . . . . . . . . . . . #dystonia #cervicaldystonia #dystoniamovesme #dystoniaawareness #movementdisorder #disability #headshakes #shaking #spasm #musclespasm #pt #physicaltherapy #nonoshake #neurological #vestibular #nystagmus #diagnose #Portland #YouTube #vlog #vlogger #mysterydiagnosis #botox #nobotox #cure #invisibleillness
48 9
https://www.mdscongress.org/Congress-2018.htm #neurology #parkinsonsdisease #movementdisorder #hong_kong
17 0
Y I I P P I I E E . . . Unsere Kampagne ★ ✰ Dystonia Awareness flies around the World ★ ✰ ist nun auch in Amsterdam angekommen! ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ Our campaign ★ ✰ Dystonia Awareness flies around the World ★ ✰ is now arrived in Amsterdam as well! #Dys#DystoniaenessfliesaroundtheWorld #Dys#DystoniefonlineeV #Dystonia #Dystonie #Neurologie #Neurology #Bewegungsstörung #Movementdisorder #DBS #THS #TiefeHirnstimulation #DeepBrainStimulation #Amsterdam #Niederland
24 0
Y I I P P I I E E . . . Unsere Kampagne ★ ✰ Dystonia Awareness flies around the World ★ ✰ ist nun auch in Amsterdam angekommen! ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ Our campaign ★ ✰ Dystonia Awareness flies around the World ★ ✰ is now arrived in Amsterdam as well! #Dys#DystoniaenessfliesaroundtheWorld #Dys#DystoniefonlineeV #Dystonia #Dystonie #Neurologie #Neurology #Bewegungsstörung #Movementdisorder #DBS #THS #TiefeHirnstimulation #DeepBrainStimulation #Amsterdam #Niederland
17 0
Y I I P P I I E E . . . Unsere Kampagne ★ ✰ Dystonia Awareness flies around the World ★ ✰ ist nun auch in Amsterdam angekommen! ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ Our campaign ★ ✰ Dystonia Awareness flies around the World ★ ✰ is now arrived in Amsterdam as well! #Dys#DystoniaenessfliesaroundtheWorld #Dys#DystoniefonlineeV #Dystonia #Dystonie #Neurologie #Neurology #Bewegungsstörung #Movementdisorder #DBS #THS #TiefeHirnstimulation #DeepBrainStimulation #Amsterdam #Niederland
20 0
Y I I P P I I E E . . . Unsere Kampagne ★ ✰ Dystonia Awareness flies around the World ★ ✰ ist nun auch in Amsterdam angekommen! ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ Our campaign ★ ✰ Dystonia Awareness flies around the World ★ ✰ is now arrived in Amsterdam as well! #Dys#DystoniaenessfliesaroundtheWorld #Dys#DystoniefonlineeV #Dystonia #Dystonie #Neurologie #Neurology #Bewegungsstörung #Movementdisorder #DBS #THS #TiefeHirnstimulation #DeepBrainStimulation #Amsterdam #Niederland
17 0
On route to the National Hospital for Neurology and Neurosurgery in London to see a specialist on movement disorders/FND. Hoping this is the first step to setting up a treatment plan that will help me. Feeling nervous. Feeling horrendous from the after affects of the seizure Saturday night, the concussion and the flare I always get at a certain time of each month! #lifeofafndwarrior #lifeofaFNDwarrior #functionalneurologicaldisorder #movementdisorder #dystonia #nhnn #nationalhospitalforneurologyandneurosurgery #uchl #universitycollegehospitallondon #london #chronicillnessfighter #chronicfatigue #nervous #wishmeluck
15 1
Y I I P P I I E E . . . Unsere Kampagne ★ ✰ Dystonia Awareness flies around the World ★ ✰ ist nun auch in Amsterdam angekommen! ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ Our campaign ★ ✰ Dystonia Awareness flies around the World ★ ✰ is now arrived in Amsterdam as well! #Dys#DystoniaenessfliesaroundtheWorld #Dys#DystoniefonlineeV #Dystonia #Dystonie #Neurologie #Neurology #Bewegungsstörung #Movementdisorder #DBS #THS #TiefeHirnstimulation #DeepBrainStimulation #Amsterdam  #Niederland
25 0
Another AFO casting today for this growing little man. Dax is getting used to this process, he even tried to lend a hand. 👣Dax 3 years young 👣 #afos #willwalk #korthotics #congenitalcmv #congenitalcytomegalovirus #dystonia #movementdisorder
74 6
Had a blast traversing with these slopers on Huge Jack, Man. Only 1 hold away from the send, but considering a year ago I couldn't keep my grip on slopers, I'll take it 🙌
61 3
New blog about frustration in chronic illness https://theunhealthyhealthfreak.com/2018/02/18/frustration-in-chronic-illness/ At the end of the day regardless of how Ill I am I know that plant based eating is the best I can do for my body. Having the occasional slip is normal but I paid the price for it. I try to focus on the positives . Long term prevention of other illnesses, ethical and environmental benefits. I wish it was a CURE all . I wish I felt better .I have to assume my initial small benefits were just a better week than normal. Still keeping on. #chronicillness #plantbased #functionalneurologicaldisorder #seizuredisorder #movementdisorder #tics #dystonia #myclonus #chronicpain #fatigue #sensorydisorder #diabetes #gastritis #theunhealthyhealthfreak
9 0
Für unsere weltweite Kampagne ★ ✰ Dystonia Awareness flies around the World ★ ✰ hat der Künstler Roland Grundheber uns ein Bild zur freien Verfügung gestellt! Trifft es unsere Kampagnen ~ Message,  nicht voll und ganz? #Dys#DystoniaenessfliesaroundtheWorld #Dys#DystoniefonlineeV #Dystonia #Dystonie #Neurologie #Neurology #Bewegungsstörung #Movementdisorder #DBS #THS #TiefeHirnstimulation #DeepBrainStimulation ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ ✰ •~• ★ For our global campaign ★ ✰ Dystonia Awareness flies around the World ★ ✰ the artist Roland Grundheber has provided us a picture free of charge! It embodies our campaign idea to 100%
11 0
I made it out of the house to see Black Panther! It started to snow as the movie let out. In a few days it will be in the 70’s. Get your act together, Mother Nature.
52 3
I just wanna watch the whole world burn Lost a million times and I won’t learn Show me someone innocent, I'll show you there’s no proof I may be gone but I'm no fool.. 🎶🖤 . . . . . . #coreytaylor #stonesour #concert #hydrogradtour #quote #lyrics #tired #houseofgoldandbones #lastweek #tb #myvalentine #metal #alternative #music #musiclover #rebel #toronto #canada #videooftheday #votd #noedits #sorryforshaking #dystonia #livingwithdystonia #movementdisorder #dystoniaawareness
42 1
NeuroparkNişantaşı Nöroloji Merkezi Parkinson hastalarının yaklaşık yarısında titreme başlangıç bulgusudur. Bunun dışında; Çabuk yorulma, halsizlik Depresyon, anksiyete, panik atak gibi ruhsal bozukluklar Unutkanlık Uyku bozuklukları Kabızlık, ortostatik hipotansiyon, artmış terleme Cinsel isteksizlik, empotans İdrar kaçırma, gece idrara çıkma Kaslarda katılık, kramlar, ağrılar Koku duyusunun kaybı Hareketlerde yavaşlık, yürüme sırasında otomatik kol hareketlerinin azalması Yüzün ifadesiz bir görünüm alması, göz kırpmada azalma Yazı yazma güçlüğü, yazının küçülmesi gibi belirtilerle de başlayabilir. #neuropark #neuroparknisantasi #nöroloji #beyin #saglik #parkinson #parkinsonhastalığı #parkinsonizm #titreme #hareketlerdeyavaşlık #depresyon #hareketbozuklukları #movementdisorder #parkinsondisease
25 0
Surprised my sweet Valentine with a singing Valentine and boy was she shocked. They drove 35 miles to us! Thank you#Happyvalentines#Iloveyou#cute# #Brunomars#Youcancountonme# #Like123#Iwillbethere#surprise# #singingvalentines#sing#beautiful# #dystonia#movementdisorder# #Neahsjourneywithdystonia# #mylove#sweetheart#oklahoma#
38 0
Die #Präsidentin des Current Affairs Committee des #KGRE (Kongress der Gemeinden & Regionen im Europarat), sowie Münchner #Stadträtin Gabriele Neff war sofort bereit unsere Kampagne ★ ✰ Dystonia Awareness flies around the World ★ ✰ mit zu unterstützen! Als wir Gabriele, von unserer Arbeit erzählten, hatte sie Gänsehaut und weil sie es so toll fand, wurde sie sofort bei uns Mitglied! Wir, Jacqui und Udo vom Dystonie Treff online e.V. freuen uns riesig über Deine Verstärkung! Herzlich Willkommen!!! #Dys#DystoniaAwarenessfliesaroundtheWorld #Dys#DystoniefonlineeV #Dystonia #Dystonie #Neurologie #Neurology #Bewegungsstörung #Movementdisorder #DBS #THS #TiefeHirnstimulation #DeepBrainStimulation
20 2
Die #Präsidentin des Current Affairs Committee des #KGRE (Kongress der Gemeinden & Regionen im Europarat), sowie Münchner #Stadträtin Gabriele Neff war sofort bereit unsere Kampagne ★ ✰ Dystonia Awareness flies around the World ★ ✰ mit zu unterstützen! Als wir Gabriele, von unserer Arbeit erzählten, hatte sie Gänsehaut und weil sie es so toll fand, wurde sie sofort bei uns Mitglied! Wir, Jacqui und Udo vom Dystonie Treff online e.V. freuen uns riesig über Deine Verstärkung! Herzlich Willkommen!!! #Dys#DystoniaAwarenessfliesaroundtheWorld #Dys#DystoniefonlineeV #Dystonia #Dystonie #Neurologie #Neurology #Bewegungsstörung #Movementdisorder #DBS #THS #TiefeHirnstimulation #DeepBrainStimulation
17 0
Die #Präsidentin des Current Affairs Committee des #KGRE (Kongress der Gemeinden & Regionen im Europarat), sowie Münchner #Stadträtin Gabriele Neff war sofort bereit unsere Kampagne ★ ✰ Dystonia Awareness flies around the World ★ ✰ mit zu unterstützen! Als wir Gabriele, von unserer Arbeit erzählten, hatte sie Gänsehaut und weil sie es so toll fand, wurde sie sofort bei uns Mitglied! Wir, Jacqui und Udo vom Dystonie Treff online e.V. freuen uns riesig über Deine Verstärkung! Herzlich Willkommen!!! #Dys#DystoniaAwarenessfliesaroundtheWorld #Dys#DystoniefonlineeV #Dystonia #Dystonie #Neurologie #Neurology #Bewegungsstörung #Movementdisorder #DBS #THS #TiefeHirnstimulation #DeepBrainStimulation
17 1
I have been admitted to St Joseph’s hospital in Auburn, Sydney. It is a rehabilitation hospital. I had lunch, which was actually nice. Apart from the zucchini and mash. Roast pork with gravy & carrots 👌🏼 Then I had a physio session. It was very random things that didn’t make sense, but my physio said it must’ve been working, as my L foot became flatter during the session. I was left extremely sore, from my hips to the tips of my toes. Nothing some pain killers couldn’t fix. And then my whole body decided to spasm. I’m glad it happened in front of the Dr and 2 nurses, so they could see what my body does. After some valium, my body had relaxed. My neck is still twitching slightly, but nowhere near as severe. Then it was time for dinner. “Beef and vegetable stew, mash and broccoli”. It was edible. Minus the broccoli. They had boiled the shit out of it! Definitely beats DBH food! Bring on the next 3 weeks to try and bring some normality back to my life 💪🏼 oh, and my dr and physio are hot 👌🏼 #stjosephshospital #reh#rehabation #rehab #hospital #food #phy#physioapy #physio #freewifi #bringiton #determined #determination #determinationiskey #healthylife #happylife #doctor #nurses #valium #dystonia #dystoniaawareness #movementdisorder #neurological #neurologicalcondition #braindisorder #painful #chronicpain #spasms #cervicaldystonia #functionaldystonia
18 3
Core strength still needs some work, but my toe hooks are coming along nicely 🙌
77 1
Synchronized salsa dancing with my twin brother. He’s got some ideas I’m not so sure about though.
242 8
Der 11. Februar ist der ✩ E U R O P Ä I S C H E ✩ T A G ✩ D E S ✩ N O T R U F S ✩ 1 1 2 ✩ In Deutschland gibt es außerdem eine weitere wichtige Nummer: den ärztlichen Bereitschaftsdienst 116117. N O T R U F 1 1 2 bei lebensbedrohlichen Fällen, starken Brust ~ und Herzschmerzen oder schweren Verletzungen B E R E I T S C H A F T S D I E N S T 1 1 6 1 1 7 wenn Praxis zu ist und Behandlung nicht bis zum nächsten Tag abwarten kann z.B. anhaltender Brechdurchfall, Fieber oder akute Bauchschmerzen #Dys#DystoniaAwarenessfliesaroundtheWorld #Dys#DystonieTreffonlineeV #Dystonia #Dystonie #Neurologie #Neurology #Bewegungsstörung #Movementdisorder #DBS #THS #TiefeHirnstimulation #DeepBrainStimulation #SOS #Notruf #Bereitschaftsdienst #TagdesNotrufs ##Nothilfe #Krankenhaus #Bereitschaftsarzt #Notarzt #Schmerzen
18 1
Der 11. Februar ist der ✩ E U R O P Ä I S C H E ✩ T A G ✩ D E S ✩ N O T R U F S ✩ 1 1 2 ✩ In Deutschland gibt es außerdem eine weitere wichtige Nummer: den ärztlichen Bereitschaftsdienst 116117. N O T R U F 1 1 2 bei lebensbedrohlichen Fällen, starken Brust ~ und Herzschmerzen oder schweren Verletzungen B E R E I T S C H A F T S D I E N S T 1 1 6 1 1 7 wenn Praxis zu ist und Behandlung nicht bis zum nächsten Tag abwarten kann z.B. anhaltender Brechdurchfall, Fieber oder akute Bauchschmerzen #Dys#DystoniaAwarenessfliesaroundtheWorld #Dys#DystonieTreffonlineeV #Dystonia #Dystonie #Neurologie #Neurology #Bewegungsstörung #Movementdisorder #DBS #THS #TiefeHirnstimulation #DeepBrainStimulation #SOS #Notruf #Bereitschaftsdienst #TagdesNotrufs ##Nothilfe #Krankenhaus #Bereitschaftsarzt #Notarzt #Schmerzen
20 1
I think I left the house once in the past two and a half weeks from the lame flu and bronchitis. But today I am determined to leave my cave to go out into the world to record our @cinemavertigogo podcast. Last time I left the house, I was subconsciously channeling Puritan fashion. Also, my hair is getting long.
73 5
Goal for this weekend: REST 😴 🛌 #beckyhasdystonia [Description: B is sitting on her bed, wearing a pink and grey leopard print onesie with a hoodie. B's head is tilted up and she's looking off to the side. Her left arm is hugging her bent legs and her right elbow is resting on her knee. She is resting her head on her hand.]
33 1
Day 123/365 of #move365challenge ————————— Saw this from @dav@davedisanto and yes it did make me hate myself...for not trying it earlier. Going to explore these further while they inspire me to step up my game. Check out @davedisanto page to see how he did it. Also go follow @notfromcolorado if you want to keep yoself moving. ————————— Have you tried this yet?
266 13