I'm 33 years old and started getting symptoms at around 14. I can go months without getting any symptoms or go a whole month with varying degrees of strength. I work as a mechanic/installation of police equipment so you can imagine the strain I put on my muscles during my weak periods working on cars. I've decided to change careers though and get into the IT field where it's less hard labor. Picking up 50 pound wheels while weak is almost reckless on my part but I have to do what I can to survive and support my family. I'll have to look into these medications though.

@rohitpawar7282

2 жыл бұрын

Had you found any permanent solution or treatment of hypoklemic pp.

I know this has nothing to do with the ad but the lady at 2:26 was my 8th grade US history teacher at Jim c Bailey middle school. Probably my favorite teacher I've ever had. Best of luck to you all.

I just watch this every once in a while because I miss Jodie. He was a light in this world.

@wailaliouate828

2 жыл бұрын

He died ?

@tammylain7754

Жыл бұрын

@@wailaliouate828 yes

Hey I have this too I'm a 13 year old boy from Pittsburgh Pennsylvania. I have been to children's hospital multiple times and I was diagnosed with this disease around 10. I know it's hard because my legs stiffin up and I fall a lot. I'm so happy to know that someone else has it! God bless

@05Tom1

4 жыл бұрын

I know how you feel man. I'm 26, and I first got symptoms for this disorder when I was 13. I'm the 3rd generation in my family to have it, so I'm quite familiar with the struggle. It's not fun. Sending good vibes your way

@sebruinsma3425

3 жыл бұрын

My son was also diagnosed at 13. He's now 23.

@rohitpawar7282

2 жыл бұрын

@@sebruinsma3425 had you found any permanent treatment of hypo pp

@rohitpawar7282

2 жыл бұрын

@@05Tom1 had you found any permanent treatment of hypo pp

@05Tom1

2 жыл бұрын

@@rohitpawar7282 sorry so say, there's no short answer for this. So I'll say, yes, and no. I use the medication Slow-K and Sando-K whenever I know I'm going to go paralysed (for me, that would be heavy exercise or eating grains mostly) The best way I've found to be rid of the symptoms (I haven't had full body paralysis in years now) is to stay fit, try avoiding your trigger foods, and when you know something is going to trigger an attack, take your medication well before you actually feel any effects. Also, Slow-K works best before going to bed, but Sando-K is best for quick results (Sando-K just tastes disgusting) That's all I can really think of right now

So grateful for Jodie and others sharing their PP story. I couldn’t be where I am today, managing what seems to be the Andersen-Tawil Syndrome subtype of periodic paralysis (typically more mild attacks of weakness compared to those with the hypokalemic form), connected to support groups, and preparing to attend the annual PPA Conference. It makes such a big difference when you know you’re not alone.

Jodie, such a wonderful presentation. I am hoping that the medication continues to be helpfull for you.

Honoring Carissa Haston gastroparesis and mitochondrial dysfunction..

I just got diagnosed last Friday.

I been diagnose 4 years ago i have Periodic Paralysis. Attacks almost everyday without warning specially when i woke in the morning then i cannot move anymore. My legs and arms is so weak. There is a time i don't want to sleep because i'm scared when i wake up i can't move again. Lack of sleep for almost 2 years now.

@Myworldmymind908

3 жыл бұрын

What tests confirmed you had this ?

@sscgktrick7215

3 жыл бұрын

Are u hypokalemia periodic paralysis patients

Im From Philippines And Im 29yrs Old now!..I have this Symtoms 21 yrs old when I started working here in Japan!..It is very hard to have this kind of Desease!..😥😔

@rohitpawar7282

2 жыл бұрын

Had you found any permanent treatment of hypo pp

@BoyMisteryo

2 жыл бұрын

@@rohitpawar7282 Mine is not Severe My Japanese Doctor just give me a medicine To take 5x a day!!..

@rohitpawar7282

2 жыл бұрын

@@BoyMisteryo which medicine (Acedazolemide or dichlorophenmide)

Hi I also have hypokalemic periodic paralysis I have had it from birth and I am now 50 years old. I live in England and at the time 1965 no one had a clue what it was. my mum tuck me to seacroft hospital and the Dr "sed it can`t happen one minute he running about and the next he can`t walk can`t happen" got me a good hiding when I got home. She dragged me to the bathroom and rubbed my underpants all over my face to try and stop it.

@rohitpawar7282

2 жыл бұрын

Had you found any permanent solution or treatment of hypoklemic pp.

"who is going to believe that" "Shit Happens"

RIP Jodie.

@kirgise88

5 жыл бұрын

Dear Sir, has Jodie actually died?

This honestly sucks I have the same problem but I fortunately have medication

good day mr. Jodie i have also the same as you can i ask if can i use ur video as my inspiration to keep fight in this rare disease

@ruthchacon8519

3 жыл бұрын

I believe he is dead now but there is link in one of the comments before you, check it out.

i have this too im 30

I'm also experiencing this kind of disease. Base on my observation I acquired when jellyfish stung me during my skin diving. Is there any scientist knows that the stinging cells of jellyfish cause mutation to our genes?

@nameforcomments4092

3 жыл бұрын

No. Sounds like nerve damage.

Day to day how Hypokalemic Periodic Paralysis affects me. Every day I am a different strength Some days I wake up completely paralyzed. These episodes last all day and can last up to Three days. These attacks do happen. 2-3 time a month and the next month I may not have any All month. But like I sed I am a different strength every day. General strength is about 30% the strength as a normal man. So I can navigate around the house But find it hard to climb the stairs. Hypokalemic Periodic Paralysis can affect single limbs i.e. just one leg or just one arm I often get it in my hands the effects are I can`t open my hand fully but I can close my hand But not to grip and hold something i.e pick up a cup hold a knife and fork hold a pen grip a computer mouse and depress the buttons. I often get general weakness in my lower back resulting being very uncomfortable all day as lactic Acid builds up due to the wait of my upper torso. If I stay in one position for more the five minute. I have to wriggle about constantly all day witch is very stress full. When I have a attack in my sleep thay are the worst of all I will be paralysed completly. and it will lastaround three day and some times longer. the longest attack lasted around four weeks. genraly most attacks just happen willst Im watching tv. Ill get a tinggling in my lips the around 5-10 mins later the strenth will just drain out of my body nerly allways my lower lims but like I sed it can affect any part of my body whitch is very dibilatating. It varys all the time. In the last part of 2013 I started to find it hard to breeth cough sneeze. The reason is my more severe attacks are now effecting my internal organs. I woke up one day in a very severe attack And my wife called 999 for a ambulance and I when to hospital with chest pains in 2013. All though I felt uncomfortable and had chest pains my weakest was in proving. I manage to get my self onto my feat and started to navigate around the ICU ward I was walking down the word holding on to the ends of the beds and then back up To try to walk off and strengthen my self up. I got my self back to wear my wife was sitting And started to talk to her. I can't remember what we were talking about. But all off a sudden I felt like I was fainting I could not stop it. It was like I had being switched off. Its like being asleep But with no dreams just black. I woke up or not I died. And came back after being resuscitated by the Dr. I was thrashing about and all around me seamed mayhem. I sed to the man looking at me "I`m scared". After I was told they are putting a pace maker in. After that I loss the ability to get aroused sexually and my hair as gone gray.

@theRPGmaster

8 жыл бұрын

You must take medication if you are still suffering these symptoms! I take the medicine called Diamox or Glaupax and it helps a great deal! I have HypoKPP, I'm currently 16 years old.

@shizzle1903

5 жыл бұрын

Andy Mann how are you?

@rohitpawar5481

2 жыл бұрын

@@theRPGmaster had you found any permanent treatment of hypo pp

@rohitpawar5481

2 жыл бұрын

@@theRPGmaster u getting attack after starting medicine

i am also suffring from this.my age is 22 now but i am worried that if i got 40 so then i'll also be paralysed totally....how will i spent my life.can i never be enjoy my life like a normal person.is there any treatment that i do used now from preventing attacks in future.

@theRPGmaster

8 жыл бұрын

Yes there is! You must take the right medications! I am 16 years old, i have the same illness as you, when i feel weak i take Kalium/Potassium, often in the form of pills named Diamox or Glaupax. Also watch out for HypoKPP triggers, like carbohydrates and heavy physical work. Ask me anything I'm happy to help

@oliviapendergast1

5 жыл бұрын

Not everyone can take diamox... I tried and it made me have more weakness and more paralysis... Trying other ones soon... still recovering front eh Diamox... So glad it helps others, though! I am 47 years old and I was so weak and paralyzed so much in my 30's...Now I am so much stronger.. I still have attacks all the time but I do yoga and go to the gym daily.... Just becuase you get older doesn't mean you will be like Jodie... Life can be great!

@rohitpawar7282

2 жыл бұрын

@@oliviapendergast1 had you found any permanent treatment of hypo pp

@rohitpawar7282

2 жыл бұрын

@@theRPGmaster still you get attack

T

hypokalemia is just a cause, the problem is your thyroid, hyperthyrodsm, when attack comes just drink 1 tablet of 250mg magnesium chloride,and your body will be normal, then go to hospital for complete medicine for thyroid,

@stellaancimer8505

8 ай бұрын

@dontknowy it is not always thyroid, mine is fine, like everything Else comes normal from blood, but i still have huge paralyses