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Hi Keith. Hope you've found some good info by now. Can't post the URLS as I am a new member, but search for HKPP, also Periodic Paralysis Association. They have loads of info. I believe there is also a Facebook group, but I'm not on Facebook. Search for Periodic Paralysis Network.
Do you know which type of PP you have(eg Hyperkalemic or Hypokalemic)? Makes a big difference to the treatment plan, as what cures the one totally messes up the other!!! I have Hypokalemic PP.
Re your question about avoiding falls.
1) Know your strength levels, and don't try to do more than you are able at a given time. Strength levels vary so much depending on time of day, triggers etc. If strength is low, don't be shy to use mobility aids.
2) ONLY when your strength is good, regularly do simple balancing and leg strengthening exercises - there are plenty on YouTube. The Japanese ones are quite good. Never push yourself beyond your limit with exercise; rather do a little bit several times a day,
3. Know your triggers and avoid them. This is where the HKPP website helps.
Please shout if I can help further! Let me know which variation you have.
Replies to "Hi Keith. Hope you've found some good info by now. Can't post the URLS as I..."
@zimbo , I believe this is the link you wanted to share with @keithl56 and others:
- Periodic Paralysis International https://hkpp.org/
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@zimbo
Thanks,
My neurologist had me scheduled for genomic testing in January, but it is now postponed until 4/16, so I don't know for sure what the diagnosis is. He also told me to try to identify my triggers and said to limit carbs since that appears to be a possible culprit. I think that cold may also contribute to episodes. He signed off on getting a handicap placard since he was worried that I could go down in the remote area of a parking lot.
I'm getting better at realizing when an episode is coming on so that I can try to sit down before I fall when possible. It's scary when I go down and can't move my legs to even try to get up. My neurologist said that if it keeps getting worse that he might recommend a walker with a seat to reduce the risk of falls, but I am fine most of the time and this would be overkill.
My balance is really bad due to chronic microvascular ischemia (which has also caused lacunar infarcts) so I have a double whammy.
Hopefully I'll get more info in April.