Great video, heartwarming story. Follow your dreams above all else. Excellent production values in this piece..please keep these stories coming.
@lindafeld94243 жыл бұрын
Thank you from the PPA crew!
@PeriodicParalysisAssociation3 жыл бұрын
Thank you for the kind words and encouragement to continue with these episodes. Stay tuned and subscribe because there is a lot more to come.
@gregatit3 жыл бұрын
Subbed since the first vid, keep up the great work and raising awareness
@Kimmerz233 жыл бұрын
I also have PP and have taught myself a couple of kpop dances. I danced when I was younger and am an endurance athlete also! This is awesome!
@lindafeld94243 жыл бұрын
Thanks for watching!!
@PeriodicParalysisAssociation3 жыл бұрын
Thank you for sharing your success story with us. Make sure to subscribe to our channel so you can stay tuned for more episodes.
@nateandcharity3 жыл бұрын
Thank you for putting a face and story behind this diagnosis.
@PeriodicParalysisAssociation3 жыл бұрын
You are very welcome. It is our pleasure and mission to give PP patients a voice. Thank you for watching. Make sure to subscribe to our channel so you can stay tuned for more episodes.
@KMx1082 жыл бұрын
I started having ocular migraines (with aura) as a pre-teen. My migraines are exactly like she describes. I'm 46 and started taking Nurtec ODT about a year ago. It is the absolute BEST thing I have ever taken for my migraines. I take the pill as soon as I'm aware of that "almost a blind spot" and all I end up with is the aura for 30 or 45 minutes and no migraine. It's incredible.
@PeriodicParalysisAssociation2 жыл бұрын
Glad to hear you have found something that helps with your migraines.
@chevaliedelareverie2 жыл бұрын
Nurtec has helped me SO much! I am so grateful to have less severe migraines thanks to it!
@flavioguamanaymar3 жыл бұрын
Thanks for sharing your experience. It´s inspiring. I also have PP but the trigger for me is different. This sickness is so weird. But I´m fine. I lernt to deal with it. Nowadays I don´t take medicine and I´m fine.
@PeriodicParalysisAssociation3 жыл бұрын
Knowing your triggers is extremely important in managing PP. It is wonderful that you are managing so well. Thank you for watching and make sure to subscribe so you can stay tuned for up coming episodes.
@angelbarrett44773 жыл бұрын
My first major episode at age 28, my vision went dark for a few seconds! Until hearing your story I never knew anyone with PP experienced that! I've watched several of these videos and it's like everyone is telling pieces of my story! This is incredible!
@PeriodicParalysisAssociation3 жыл бұрын
Angel, Have you had genetic testing for PP yet? If not, I would highly recommend that you do. You are still young and with the correct diagnosis and treatment you can hopefully reduce your chances of permanent muscle weakness.
@tammylain7754 Жыл бұрын
As soon as I get a migraine- I take K-lyte immediately... the fluid potassium. Also- when I exercise I do not stop- but I wind down over an hr or more.. I do not sit down- I move and move and move- and I get out of it within an hour. If I cannot move, my carers do passive exercises and I get out of it. May not be the solution for you.. Pills are not quick enough- but I use them together with Inspra - a potassium saving potassium. To take the fluid- just slip it slowly - then you win not throw up as much.. Try different flavours of fizzy... until you find on that you like- I blend it quite strong and take a water chaser on the side...
@PeriodicParalysisAssociation Жыл бұрын
Tammylain7754, Thank you for sharing how you have learned to manage your symptoms. Every patient is unique and knowing your own body and what it needs is key to being successful in managing symptoms. Maya's story and diagnoses has an update that is shocking. Here is the link to her family's research results. You can find that video on our channel, PP Patient Receives New Genetic Test Results - Shocking!
@beetlejuice46938 ай бұрын
I have this it's terrifying but now I know what's happening to me
@moonlightsea8 Жыл бұрын
You have HypoKPP w/Myotonia Congenita. I have HyperKPP w/Myotonia Congenita. Migraines too. I am older now, but I was a working musician in a rock group for a long time and it was not always fun. My family would rather it be a secret. I really suffered in school. You’re doing great. Do all you can, but no more than that 🙂
@PeriodicParalysisAssociation Жыл бұрын
Moonlightsea8, Thank you for sharing. Recently Maya's clinical diagnosis changed to a genetic diagnosis of HyperKPP. You can see the results her mother shares in Monica's Story part 3. The interesting part is that Maya shares that the potassium still works to alleviate her migraines. The reason of why it works is unknown. She only takes the potassium when she feels one coming on. Thank you for your kind words, she loves hearing from other patients.
@guitarlearningtoplay3 жыл бұрын
you should include a link to the dance group
@PeriodicParalysisAssociation3 жыл бұрын
Here is their KZbin channel link. Be sure to subscribe to our channel so you can stay tuned to more episodes. Thank you for watching. m.kzbin.info/door/thjAk2RKLvt6TqEs27sJew
@kennewman37163 жыл бұрын
Maya, A Rare Adventure Ep 01 indeed. PP Ain't for Sissies > Smiles, kenxqed
@lindafeld94243 жыл бұрын
It definitely is not!
@PeriodicParalysisAssociation3 жыл бұрын
Your statement is correct Ken, it takes strength to live with PP. The PPA does what we can to help make that journey easier. By spreading awareness we hope it will change what it means to live with PP. Make sure to subscribe to our channel so you can stay tuned to more episodes.
@Roosmari22 жыл бұрын
You are delightful and lovely.
@PeriodicParalysisAssociation2 жыл бұрын
Roosmari, thank you for that sweet comment. We hope you are enjoying the series. Be sure to subscribe so that you don't miss any episode.
@sscgktrick72153 жыл бұрын
Are u hypokalemia periodic paralysis patients
@PeriodicParalysisAssociation3 жыл бұрын
Education Hi jivan, thank you for your question. At the time of this video Maya was diagnosed with Hypokalemic periodic paralysis. She is currently waiting on her genetic results to confirm that diagnosis.