Well, it's been quite a while since I've posted once again and there's much that's gone on over the past 3 to 4 months that could use some explaining, however, the majority of all of that does not belong on here because it involves other people. So, suffice it to say that Easter has come and gone and the Odum family in Orangevale is returning to some semblance of normal following a week long spring break for both kids.
Okay, new rant, yet brief: is there any logic, WHAT SO EVER, to youths and young adult males still wearing their pants at or below their butt line, so that when they walk one hand must always be holding onto their pants so that they don't fall completely off?? I truly, truly, truly did not get it! All right, I'll do my best to stop there and try and let it go for the day. GAHHH!!!!!!
I was noting today, while looking around on YouTube.com that there are hardly any elaborative or definitive videos of people suffering from HKPP attacks. I found only one and it appears to be far more of a joke with the attacks seeming like some kind of punch line, rather than it being a beneficial video to somebody wondering if they are contending with neuromuscular attacks such as HKPP. Actually when I watched the video, I ended up more frustrated by what I saw them I did encouraged that there were was a video on YouTube entitled HKPP or Periodic Paralysis. So, what this brings me to, is feeling strongly that I should be videotaping my attacks as often as we are able to catch them on video, but not attacks where I'm not moving because that shows nothing to the viewer, in my opinion. What I'm finally at the point of wanting people to see, and recognize is that this disease manifests itself in a variety of different physical ways and unfortunately for me, but possibly fortunately for those who would view any of the videos, I suffer from a variety of attack manifestations, most of which are very apparent to the eye and I think would be helpful to have on tape. Some of the videos that I had seen on YouTube shows a person simply not moving for 30 or so seconds, and for me, that shows me only that a person can stay still for that amount of time rather than describing what's going on to the person in the video, so that's kind of where my head is right now. We have a Sony digital camcorder that we do all of our video recording on, but I am no longer able to locate the software install disk which will allow my computer to recognize the camera, so if anyone reading this has some constructive suggestions as to how I can remedy that problem without having to spend the money on buying another software package from Sony, please, please share it with me.
Now, as far as attacks go over the past 3 to 4 months, they have been nearly daily; ranging from full body “rag doll” paralysis to localized appendage paralysis, full body muscle spasms in a cyclical manner to full body “lockup” paralysis. Only in the past of weeks have I felt that I'm gaining ground back again, with much of that, in part, due to Mark McCoy and his Physical Therapy Clinic. The last attack was two days ago, Tuesday, shortly after helping CC cut off one of the branches on one of our backyard trees. I didn't feel it was very much effort at all, but CC told me later that she could see in my eyes and in my posture, that the attack was imminent. Very shortly after cutting the branch, I went back inside and sat down in my black chair and within a matter of minutes, I was down for the next four hours; unable to get up, speak and move.
I think it's also worth sharing that on Easter Sunday, I ended up having two attacks, hours apart from each other, but that following each of these attacks, my body rebounded in a matter of minutes after I was able to drink two or three doses of potassium each time. It will never get old to me and it will never be unimportant, to share that the biggest difference, in terms of having a better quality of life, was when we attended the 2009 Periodic Paralysis Conference in Orlando, Florida and we learned that the method of potassium treatment that we had been using since my diagnosis, was at best 7% to 10% effective in raising my potassium levels every time. We had no idea that the method of combining Apple juice with 25 mEq of liquid potassium was counter-effective, but it made all kinds of sense once it was explained to us and we were then able to understand why it would take me so very long to recover from my attacks. I'm not sure how many people read this or how many people remember how long my attacks were back in 2006 and 2007, but I would have attacks that would leave me bedridden for sometimes weeks at a time and I had to have home healthcare come to our house 2 to 3 times a week to run my labs and determine whether or not I needed to be admitted to the hospital to jumpstart the recovery. All of that has changed. All of it. At the conference, we were given the opportunity to try another form of potassium during one of my attacks, and the speed at which I recovered was astounding. If there is anyone out there who is battling a similar or same battle to mine, and your primary method of addressing your low potassium is with liquid potassium, then I would greatly encourage you to ask your doctor if you could try the Effer-K 25 mEq effervescent tablets. The reality that my attacks sometimes last hours is still a welcomed change to what, in my past, have been days, not hours. I think that there is another critical factor in terms of my faster recovery rate, and that is the weekly muscle stretching and massage attention that comes from my attending physical therapy twice a week. It's not a matter of only muscle stretching and weight conditioning nor is it only massage in the muscles but it is the combination that is helping to mitigate the muscle damage that I experience from each and every hit. That's something that a lot of people don't talk about when they get into discussions of HKPP as well as other forms of periodic paralysis, and that is that the muscles that are being affected by the leakage in the Channelopathy at the cellular level, are being permanently damaged with each attack, so, the better condition the muscle can be in prior to the attack, the less the damage and, to an extent, the quicker the recovery.
Well, it would appear that I have more on my mind than I thought... I hope all this make sense, but if it doesn't, that's okay.
Today has been a very, very full day and I am wiped out tired, so I'm going to post this and go and lay down for the remainder of the day/evening. As always, your prayers are coveted and your encouraging thoughts are warmly received.
Peace.
