Not certain about the name but when I had an incomplete spinal cord injury at 18 years of age it caused a Central Cord injury that involved temporary periods of paralysis of arm and/or leg on my left side.
I had a neck injury at 16 (wrestling) and ended up in the hospital in traction for 2 weeks followed by 6 months in a brace. Fast forward and I reinjured it just prior to going on a 3 week safari. PCP thought I just strained it and gave me muscle relaxants and pain killers and sent me on my way. Bouncing around in a range rover for a few weeks led to my arm being partially paralyzed. Got home and went right to spinal fusion surgery. It was so bad that the anesthesiologist made me stay awake during intubation to make sure she didn't do further damage.
This situation is not injury related but may have a genetic cause so I have to do genetic testing. It may respond to some drug therapy if that turns out to be it.
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.
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.
@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.
Sorry you're having to wait so long for a diagnosis. Identifying your triggers is important while you wait (and for long term management). Keep a journal where you note several times a day:
- Everything you ate/drank, and what time
- Weather (since cold seems to be a factor)
- Any trips taken (weirdly, low altitudes set mine off!)
- Any medications taken
- Any events such as a major fright
- Stress levels
- Strength levels, ideally taken 3 times a day at roughly the same time. I use a very simple test: lie down and raise one leg a few inches. Measure in seconds how long you can comfortably keep it there. (May sometimes be 0 seconds!)
- Attacks
From this you should be able to establish a pattern. You actually need to go back as far as 48 hours from an attack as some triggers take a while to activate.
Carbs, especially anything with sugar, set off hypo KPP; potassium-rich foods set off hyper KPP. Some rarer variations can be set off by either!
Keep this journal for next time you see the neurologist.
Read as much as you can from the websites I mentioned.
If I'm not in a good place with strength levels, I carry a very light camping stool with me in a carrier bag everywhere I go. This means I can just sit down as needed, including in the middle of a supermarket. I probably look like a right charley but who cares.
Another tip is: don't exercise if your strength levels are low. With a bad attack, I do only what absolutely has to be done, and plan things eg using a high stool to wash dishes. Once it eases off I start doing exercise at ridiculously low levels eg bicep curls without weights, building up to bicep curls with a 300ml water bottle as the weight - whoopee! And, with luck, eventually building up to proper weights.
Accept your strength levels as they are, and build up slowly.
Sorry you're having to wait so long for a diagnosis. Identifying your triggers is important while you wait (and for long term management). Keep a journal where you note several times a day:
- Everything you ate/drank, and what time
- Weather (since cold seems to be a factor)
- Any trips taken (weirdly, low altitudes set mine off!)
- Any medications taken
- Any events such as a major fright
- Stress levels
- Strength levels, ideally taken 3 times a day at roughly the same time. I use a very simple test: lie down and raise one leg a few inches. Measure in seconds how long you can comfortably keep it there. (May sometimes be 0 seconds!)
- Attacks
From this you should be able to establish a pattern. You actually need to go back as far as 48 hours from an attack as some triggers take a while to activate.
Carbs, especially anything with sugar, set off hypo KPP; potassium-rich foods set off hyper KPP. Some rarer variations can be set off by either!
Keep this journal for next time you see the neurologist.
Read as much as you can from the websites I mentioned.
If I'm not in a good place with strength levels, I carry a very light camping stool with me in a carrier bag everywhere I go. This means I can just sit down as needed, including in the middle of a supermarket. I probably look like a right charley but who cares.
Another tip is: don't exercise if your strength levels are low. With a bad attack, I do only what absolutely has to be done, and plan things eg using a high stool to wash dishes. Once it eases off I start doing exercise at ridiculously low levels eg bicep curls without weights, building up to bicep curls with a 300ml water bottle as the weight - whoopee! And, with luck, eventually building up to proper weights.
Accept your strength levels as they are, and build up slowly.
@zimbo
good tips! I recently started using a stool (prompted by my wife) when cooking. Sometimes when I cook I can spend a couple of hours standing between prep and cooking and would get quite wobbly. Now I sit at the counter to do as much as possible rather than standing at the island, it helps.
Great! I'd be interested to know how it goes with the diary. The time waiting for a diagnosis is the pits, but once you know what you have and how to manage it, life gets a LOT easier. And if you can identify your triggers, you can probably make things a lot better even before the diagnosis.
It is a bit of a paradoxical situation. I had 4 episodes in a month (a couple of really nasty falls, cuts and bruises but fortunately didn't break anything or hit my head). I had my regularly scheduled neurologist visit shortly after and we discussed possible triggers. Since then, I have been avoiding them and have gone several weeks without a fall. So, it is great that I have better control over the situation, but by eliminating several triggers at once I'm not sure what my actual triggers are. At least with the prospect of warmer weather, I won't be worried about the cold trigger, However, as I sit here the waterfalls in my pool are still running as an automatic freeze protection and I'm in South Carolina!
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.
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Not certain about the name but when I had an incomplete spinal cord injury at 18 years of age it caused a Central Cord injury that involved temporary periods of paralysis of arm and/or leg on my left side.
I had a neck injury at 16 (wrestling) and ended up in the hospital in traction for 2 weeks followed by 6 months in a brace. Fast forward and I reinjured it just prior to going on a 3 week safari. PCP thought I just strained it and gave me muscle relaxants and pain killers and sent me on my way. Bouncing around in a range rover for a few weeks led to my arm being partially paralyzed. Got home and went right to spinal fusion surgery. It was so bad that the anesthesiologist made me stay awake during intubation to make sure she didn't do further damage.
This situation is not injury related but may have a genetic cause so I have to do genetic testing. It may respond to some drug therapy if that turns out to be it.
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.
@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.
Hi
Sorry you're having to wait so long for a diagnosis. Identifying your triggers is important while you wait (and for long term management). Keep a journal where you note several times a day:
- Everything you ate/drank, and what time
- Weather (since cold seems to be a factor)
- Any trips taken (weirdly, low altitudes set mine off!)
- Any medications taken
- Any events such as a major fright
- Stress levels
- Strength levels, ideally taken 3 times a day at roughly the same time. I use a very simple test: lie down and raise one leg a few inches. Measure in seconds how long you can comfortably keep it there. (May sometimes be 0 seconds!)
- Attacks
From this you should be able to establish a pattern. You actually need to go back as far as 48 hours from an attack as some triggers take a while to activate.
Carbs, especially anything with sugar, set off hypo KPP; potassium-rich foods set off hyper KPP. Some rarer variations can be set off by either!
Keep this journal for next time you see the neurologist.
Read as much as you can from the websites I mentioned.
If I'm not in a good place with strength levels, I carry a very light camping stool with me in a carrier bag everywhere I go. This means I can just sit down as needed, including in the middle of a supermarket. I probably look like a right charley but who cares.
Another tip is: don't exercise if your strength levels are low. With a bad attack, I do only what absolutely has to be done, and plan things eg using a high stool to wash dishes. Once it eases off I start doing exercise at ridiculously low levels eg bicep curls without weights, building up to bicep curls with a 300ml water bottle as the weight - whoopee! And, with luck, eventually building up to proper weights.
Accept your strength levels as they are, and build up slowly.
Rooting for you. Keep in touch!
Another thought: salt is a trigger for some people. Not for me, thankfully! So note salt intake in your journal too.
@zimbo
good tips! I recently started using a stool (prompted by my wife) when cooking. Sometimes when I cook I can spend a couple of hours standing between prep and cooking and would get quite wobbly. Now I sit at the counter to do as much as possible rather than standing at the island, it helps.
Great! I'd be interested to know how it goes with the diary. The time waiting for a diagnosis is the pits, but once you know what you have and how to manage it, life gets a LOT easier. And if you can identify your triggers, you can probably make things a lot better even before the diagnosis.
It is a bit of a paradoxical situation. I had 4 episodes in a month (a couple of really nasty falls, cuts and bruises but fortunately didn't break anything or hit my head). I had my regularly scheduled neurologist visit shortly after and we discussed possible triggers. Since then, I have been avoiding them and have gone several weeks without a fall. So, it is great that I have better control over the situation, but by eliminating several triggers at once I'm not sure what my actual triggers are. At least with the prospect of warmer weather, I won't be worried about the cold trigger, However, as I sit here the waterfalls in my pool are still running as an automatic freeze protection and I'm in South Carolina!
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1 Reaction@zimbo , I believe this is the link you wanted to share with @keithl56 and others:
- Periodic Paralysis International https://hkpp.org/