Aww, I loved hearing about you service dog and how he helps you! I wouldn't have thought of training him the way you did! I also have a heart condition that nearly killed me spontaneously, as well as paralysis, so I have been looking into how a service dog could help me/go get help in an attack
I really appreciate that you cover the experiences of people with an atypical presentation. Ive heard of people in the UK being told you can always speak for example. I can often speak these days but user to have episodes sometimes where i couldn't. I haven't been able to access a specialist yet because I'm restricted to home and can't travel but everything fits (including triggers and high potassium levels recorded on a horiba meter during episodes, family members with milder presentations) so hopefully I'll be able to eventually.
Hi Monica. So I take it you're also a Floridian? I live outside of Tampa. I'm still in the early stages of diagnosis and treatment, but pretty much everything in your story is like mine. No family history of PP. Increasing episodes of weakness over the years. Didn't have first paralysis episode until age 57...took 13 hours to fully come out of it. Have had episodes of extreme weakness and sometimes paralysis ever since. Had a HS FB friend ask me if I had heard of PP. Looked it up online, saw Jake's video, knew I'd found what I had. Happened to see that PPA convention was in 2 weeks in Orlando, so we went for the Friday session. Met Jake in person and had a bit of a fangirl moment, lol! I've had issues with low potassium all my adult life so when I saw Dr Jerath (who we met at the convention), hypoPP was the diagnosis. But I don't have any of the known genes. Just went to see Dr Youell, also in Orlando, and told him I had occasional episodes of rigid paralysis. He told me that's myotonia/paramyotonia. The videos of you in hospital and being taken out of the car are me exactly. I'd love to ask you some questions. Please e-mail me if you're willing. RJ@kolbegger.com. I'm on the message board (the main one, I think... Linda's one of the moderators). I wish I could have a service dog. At the moment I'm homebound basically as my attacks are so frequent. Like you, emotional stress, good or bad, is a big trigger. And walking too much. Hugs, and it's so good to see someone living well with this disorder. Thank you for the video!!!
Zenderlee, I am glad to hear that you are with doctors that are able to help. Not sure if you watched my last video, part 3. The genetic results actually showed I am Hyper PP. Dr. Cannon explains more about his findings in that video and the SCN4A variant video, you may find them very helpful. Unfortunately, we cannot really answer questions on this platform or through personal emails, please submit your questions through Ask an Expert on our website and direct them to me, I would love to answer them. Looking forward to hearing from you, Monica
This makes me tear up. Her symptoms are very similar to mine. Where does she live. I’m in Georgia and the medical care here is so bad when it comes to more complicated cases. Also, I feel it’s time for me to look into getting a service dog. 😔
Alisha, it's Monica. I live in Florida so not far from you. Will you be coming to the PPA conference this year here in Orlando? My sister lives in Atlanta, she actually comes to Orlando to see doctors because she too has had problems getting quality care in Georgia.
Thank you for sharing your story! It gives me much to consider... How did you start the journey of getting a service dog? Did it take a long time to get one? Again, thanks!
Ramona, this is Monica. I did not go through a service dog organization because I wanted a dog that did not shed. Plus my symptoms can be very different from one episode to the next, and I needed a dog trained specifically to me. Organizations like Canine Companions for Independence have about a two year waiting list. You can reach out to them to see if it would be that long for you. Those dogs are free. I purchased my dog from a breeder that breeds specifically for service, alert and worked with a trainer. I was able to do a lot of the training myself (homework is what my trainer called it) and that saved me thousands of dollars. My initial investment was around $7500.00 and well worth it. I hope this information helps.
Im also doing research on getting a service dog. I recently found servicedogacademy.com and I cant say if it works or not but they do have a recorded success for medical alert training for hypokpp. Plus the huge benefit of zoom classes. Like I said I have no actual experiance with the program, but it seems interesting
Monica-Would you mind sharing your diet somewhere?! I can relate to alot of this and I am SUPER sensitive TO SO many things too! Just wondering what few things you have found that you eat haha! I'm only 3 years in and still learning ALOT.
Baby Got Waxx, Monica's story is not over. She will be returning to share more of her journey. In her next episode she will be sharing the update on her diagnosis and that will include diet information.
I have the same condition it’s very rare and it sucks but I’m willing to give you guys some tips on how to manage it better if you feel an episode coming on 1 eat a chocolate bar the sugar will stop it 2 don’t panic or worry it speeds up the attack 3 eat before bed it will hold you through the night 4 sleep with fleece sheets you want to be warm but not sweating set the heat right 5 stay away from air conditioning it’s bad for you 6 live in a dryer climate if you can hope this info help’s
curt v, thank you for your suggestions. Sharing what helps you in an episode can be helpful to others. We just need to keep in mind what type of PP we take suggestions from. What can help a Hyper PP can be very bad for those with Hypo PP.
Omg totally! This one time I was at the bank, before I was dx'd, I went to the bank, and was triggered by heat and dehydration (it was the middle of winter) and I got way slurry and droopy, I almost passed out there. The teller was pretty sure I was drunk, the security guy was eyein me, luckily I had someone in the car so they let me leave, buuuut, after I had recovered I was like, oh, I think I got close to trouble there @.@ Thanks Monica and PPA! Lovin the series!
Alisha, vocal cords can be effected by the paralysis due to the muscles not being able to do their job. The inability to speak for those with PP is more than vocal cord issues but brain to body communication. The ion channels are not sending the message. In less sever episodes people with PP can have a hoarse sounding voice due to muscle weakness.
I have HyperKPP with PMC. Thank-you all for making this strange disorder "human". I have always endeavored to consider myself as more than a defective, second-class human. My family story with this is profound and sad.
Moonlightsea8 we are all so much more than our PP. It does not define us. Have you checked out the resources on the Periodic Paralysis Association website? Things have and continue to change in what it means to have PP. I hope it can help change the pattern of the sad history of PP in your family for a brighter future.
Aww, I loved hearing about you service dog and how he helps you! I wouldn't have thought of training him the way you did!
I also have a heart condition that nearly killed me spontaneously, as well as paralysis, so I have been looking into how a service dog could help me/go get help in an attack
I really appreciate that you cover the experiences of people with an atypical presentation. Ive heard of people in the UK being told you can always speak for example. I can often speak these days but user to have episodes sometimes where i couldn't. I haven't been able to access a specialist yet because I'm restricted to home and can't travel but everything fits (including triggers and high potassium levels recorded on a horiba meter during episodes, family members with milder presentations) so hopefully I'll be able to eventually.
Thank you for sharing your story. Are you in the UK?
Hi Monica. So I take it you're also a Floridian? I live outside of Tampa. I'm still in the early stages of diagnosis and treatment, but pretty much everything in your story is like mine. No family history of PP. Increasing episodes of weakness over the years. Didn't have first paralysis episode until age 57...took 13 hours to fully come out of it. Have had episodes of extreme weakness and sometimes paralysis ever since. Had a HS FB friend ask me if I had heard of PP. Looked it up online, saw Jake's video, knew I'd found what I had. Happened to see that PPA convention was in 2 weeks in Orlando, so we went for the Friday session. Met Jake in person and had a bit of a fangirl moment, lol!
I've had issues with low potassium all my adult life so when I saw Dr Jerath (who we met at the convention), hypoPP was the diagnosis. But I don't have any of the known genes. Just went to see Dr Youell, also in Orlando, and told him I had occasional episodes of rigid paralysis. He told me that's myotonia/paramyotonia. The videos of you in hospital and being taken out of the car are me exactly. I'd love to ask you some questions. Please e-mail me if you're willing. RJ@kolbegger.com. I'm on the message board (the main one, I think... Linda's one of the moderators). I wish I could have a service dog. At the moment I'm homebound basically as my attacks are so frequent. Like you, emotional stress, good or bad, is a big trigger. And walking too much.
Hugs, and it's so good to see someone living well with this disorder. Thank you for the video!!!
Zenderlee, I am glad to hear that you are with doctors that are able to help. Not sure if you watched my last video, part 3. The genetic results actually showed I am Hyper PP. Dr. Cannon explains more about his findings in that video and the SCN4A variant video, you may find them very helpful. Unfortunately, we cannot really answer questions on this platform or through personal emails, please submit your questions through Ask an Expert on our website and direct them to me, I would love to answer them.
Looking forward to hearing from you,
Monica
This makes me tear up. Her symptoms are very similar to mine. Where does she live. I’m in Georgia and the medical care here is so bad when it comes to more complicated cases. Also, I feel it’s time for me to look into getting a service dog. 😔
Alisha, it's Monica. I live in Florida so not far from you. Will you be coming to the PPA conference this year here in Orlando? My sister lives in Atlanta, she actually comes to Orlando to see doctors because she too has had problems getting quality care in Georgia.
Thank you for sharing your story! It gives me much to consider... How did you start the journey of getting a service dog? Did it take a long time to get one? Again, thanks!
Ramona, this is Monica. I did not go through a service dog organization because I wanted a dog that did not shed. Plus my symptoms can be very different from one episode to the next, and I needed a dog trained specifically to me. Organizations like Canine Companions for Independence have about a two year waiting list. You can reach out to them to see if it would be that long for you. Those dogs are free. I purchased my dog from a breeder that breeds specifically for service, alert and worked with a trainer. I was able to do a lot of the training myself (homework is what my trainer called it) and that saved me thousands of dollars. My initial investment was around $7500.00 and well worth it. I hope this information helps.
Im also doing research on getting a service dog. I recently found servicedogacademy.com and I cant say if it works or not but they do have a recorded success for medical alert training for hypokpp. Plus the huge benefit of zoom classes. Like I said I have no actual experiance with the program, but it seems interesting
@@PeriodicParalysisAssociation thank you for this information!
@@melissarichards4716 thank you for your information, too!
Monica-Would you mind sharing your diet somewhere?! I can relate to alot of this and I am SUPER sensitive TO SO many things too! Just wondering what few things you have found that you eat haha! I'm only 3 years in and still learning ALOT.
Baby Got Waxx, Monica's story is not over. She will be returning to share more of her journey. In her next episode she will be sharing the update on her diagnosis and that will include diet information.
I have the same condition it’s very rare and it sucks but I’m willing to give you guys some tips on how to manage it better if you feel an episode coming on 1 eat a chocolate bar the sugar will stop it 2 don’t panic or worry it speeds up the attack 3 eat before bed it will hold you through the night 4 sleep with fleece sheets you want to be warm but not sweating set the heat right 5 stay away from air conditioning it’s bad for you 6 live in a dryer climate if you can hope this info help’s
curt v, thank you for your suggestions. Sharing what helps you in an episode can be helpful to others. We just need to keep in mind what type of PP we take suggestions from. What can help a Hyper PP can be very bad for those with Hypo PP.
Omg totally! This one time I was at the bank, before I was dx'd, I went to the bank, and was triggered by heat and dehydration (it was the middle of winter) and I got way slurry and droopy, I almost passed out there. The teller was pretty sure I was drunk, the security guy was eyein me, luckily I had someone in the car so they let me leave, buuuut, after I had recovered I was like, oh, I think I got close to trouble there @.@
Thanks Monica and PPA! Lovin the series!
Melissa, glad someone was there to drive you. Glad to her you are loving the series. Make sure to subscribe to our channel.
when and where is the next Periodic Paralysis conference?
In Orlando Florida October 30-31st 2021. Here is a link for more information. periodicparalysis.org/2021-periodic-paralysis-conference/
Is there anyone else in the group that has vocal cord paralysis? Physical movement is possible, but speech is impossible from 1-2 hours or so.
Alisha, vocal cords can be effected by the paralysis due to the muscles not being able to do their job. The inability to speak for those with PP is more than vocal cord issues but brain to body communication. The ion channels are not sending the message. In less sever episodes people with PP can have a hoarse sounding voice due to muscle weakness.
I have HyperKPP with PMC. Thank-you all for making this strange disorder "human". I have always endeavored to consider myself as more than a defective, second-class human. My family story with this is profound and sad.
Moonlightsea8 we are all so much more than our PP. It does not define us. Have you checked out the resources on the Periodic Paralysis Association website? Things have and continue to change in what it means to have PP. I hope it can help change the pattern of the sad history of PP in your family for a brighter future.