Staying Active with Periodic Paralysis | Maya's story | A Rare Adventure Ep 01

[@gregatit]

Great video, heartwarming story. Follow your dreams above all else. Excellent production values in this piece..please keep these stories coming.

[@lindafeld9424]

Thank you from the PPA crew!

[@PeriodicParalysisAssociation]

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.

[@gregatit]

Subbed since the first vid, keep up the great work and raising awareness

[@Kimmerz23]

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!

[@lindafeld9424]

Thanks for watching!!

[@PeriodicParalysisAssociation]

Thank you for sharing your success story with us. Make sure to subscribe to our channel so you can stay tuned for more episodes.

[@nateandcharity]

Thank you for putting a face and story behind this diagnosis.

[@PeriodicParalysisAssociation]

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.

[@KMx108]

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.

[@PeriodicParalysisAssociation]

Glad to hear you have found something that helps with your migraines.

[@chevaliedelareverie]

Nurtec has helped me SO much! I am so grateful to have less severe migraines thanks to it!

[@flavioguamanaymar]

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.

[@PeriodicParalysisAssociation]

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.

[@angelbarrett4477]

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!

[@PeriodicParalysisAssociation]

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]

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]

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!

[@beetlejuice4693]

I have this it's terrifying but now I know what's happening to me

[@moonlightsea8]

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]

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.

[@guitarlearningtoplay]

you should include a link to the dance group

[@PeriodicParalysisAssociation]

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

[@kennewman3716]

Maya, A Rare Adventure Ep 01 indeed. PP Ain't for Sissies > Smiles, kenxqed

[@lindafeld9424]

It definitely is not!

[@PeriodicParalysisAssociation]

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.

[@Roosmari2]

You are delightful and lovely.

[@PeriodicParalysisAssociation]

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.

[@sscgktrick7215]

Are u hypokalemia periodic paralysis patients

[@PeriodicParalysisAssociation]

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.

[@sscgktrick7215]

Where are u from friend