Tuesday, March 31, 2009
Another hit just after 4
Another hit just after 4 today. Though it was not as bad as others, I have been down since and medicated. :-(
Monday's & Sunday's review
Monday, March 30, 2009
Being unsure how to begin some of this re-cap, I will start with today and work my way backwards, I suppose.
I woke up this morning in less pain than I thought I would be in otherwise; a good sign and refreshing as well. Today came and went without an attack or crash, and that's good news. I have added "Crash" to my HKPP vocabulary. When I have an attack of a paralytic nature or of muscular spasmatic/cramp nature, I refer to them as a "hit" or an "attack", but when I am referring to a crash, it is generally related to, more often than not, either ingesting a higher level of sugar (a diabetic reaction) sodium, but not enough to trigger the next level or "hit". For me, I would describe crashing as having a matter of one to two minutes time to get myself into a chair or on a couch or a bed and prepared to go to sleep because my body is shutting down or crashing. Crashes also include mild isolated muscle spasms, profuse body sweats, occasional leg, foot or finger cramping and an inability to communicate with my eyes or mouth/speech. Sometimes I can make some vocal sounds (groans or brief "Mmmm.." sounds, but each crash, attack/hit is different from the next. I typically end up, more often than not, going right to sleep and I will sleep for five to seven hours during an average crash.
Today's breakfast was 2 scrambled eggs with two pieces of toast that had salted butter and some blackberry jelly on them. Also, included in the scrambled eggs was less than a quarter cup of Lucerne mild cheddar cheese, and a third of a small chicken breast (diced) that had been grilled (plain) the night before. I didn't have any snacks, but for lunch I had a turkey leg and a large glass of a Cherry/Berry/yogurt smoothie. At dinner time, I had a baked potato with some butter, some ground beef, some mild cheddar cheese and sour cream. My desert was a small portion of a pumpkin pie-type of desert, which also included some whip cream on top (I married an incredible cook!). Why all the menu diatribe? Well, if there is one thing in particular that I have learned, and we have learned, in this battle, it's that my diet is a critical factor in both triggering an attack/crash and rendering my system vulnerable to a trigger that would otherwise not set me off. The things we have to watch are my sodium intake, carbohydrate intake, direct levels of sugar and it byproducts (sweeteners), and meal sizes or portions.
Sunday, CC and the kids and I all got up in time to be able to make it very near the beginning of the church service, which is very good for us, in that it is more common that we show up 10 to 20 minutes late for the service. Anyway, we came in and we went right to the location where I have been normally sitting; in the back of the sanctuary, right beside the rear center camera booth, where the head usher had offered a place for my chair to be. And when it's not packed, CC and the kids can sit directly in front of me, or we can have even a folding chair pulled beside me so that somebody can sit with me but still be out of the aisle. This is where I have been positioned since we restarted our relationship with Capital Christian a matter of months ago. There have been times in the past where an older lady usher, who is one of the two ushers for that particular set of doors, had expressed frustration that I was taking up their space, where they would normally sit in two folding chairs, directly behind me. She would remark that they were given those seats, allocated seats, to sit during the service. Even though the back pew on the other side of that door way is generally open (5' difference), she felt that they were to sit in those chairs and my being there was not appropriate, end of story. Well, this particular morning (ok, not this morning, but this past Sunday morning), that situation escalated and it was very maddening for me. When we came in to church, I went straight in and went over to the doorway I usually go in through and the doors were open so I rolled in and got into position as Josh was with me. CC and Missy were looking for another pew to sit in because the one in front of us had people in it. While Josh and I were figuring out how to get situated, the female usher leaned over and said, in a out of patience tone and voice, that it was just not appropriate for us to sit there and it's not right. We should not sit there, that that space is for ushers only and we do not belong there; it blocks their view. After telling Joshy to pick up our stuff and go right back out, I turned my chair around (even though some folks were walking in to take their seats) and worked my way past them and went out and located the head usher who had helped us in the past and originally located THAT spot for me to sit in! I briefly explained what it taken place and what had been said. She walked over to the doorway, as we went back as well and she talked to the woman usher and then she told me to go ahead, and park my chair and I would be fine. So, Joshy and I began to get re-settled again, and once again the gal came back down in front of Joshy and me and leaned over so that I could see her very clearly and said it's absolutely not right for me to sit there and that she's going to talk to the senior pastor about this because what I'm doing is absolutely wrong. At that apologized for the bottom of her heart and her voice was cracked ahead point I had reached the end of my patience and composure and was very angry; not in the mood to even stay in church at that point. I was flying through angry thoughts and thinking "...there aren't very many places that I can sit in church, let alone in most churches or even restaurants or theaters...!" and the frustration of that reality welled up inside of me at the same time of the frustration that I have to be sitting in this chair in the first place, that I don't have the ability anymore to sit in a pew or folding chair for any real length of time. So all those things came up, and I was angry. As we were going back around to leave again, the head usher was walking back in to make sure everything was all right and I told her it was NOT alright and that I was done with it at that point, and that we were going to go sit someplace else. And so she pulled the usher out to talk with her, AGAIN, but I don't know exactly how that finished out. Joshy and I rode over to the very back rear corner in the Sanctuary, where they do have allocated space specifically for handicap folks, and it unfortunately, as you might guess, is the worst seat in the house and not the best sound either. Also, the whole area where we now were is also where many of the moms with kids come in and sit; Unfortunately for me, one of the younger-aged family cultures that attend that hour of service, rears their children very differently than we reared ours. Being in that area was much more frustrating because it's very loud and very distracting and there is little monitoring of the children as they bounce from pew to pew and up and down the aisles. So, for us to attend the church, I need to be able to be located in a place where I can focus on the pastor and focus on the worship and not be distracted.
And as it turns out, that particular usher was/is simply not willing to let it go. So, as Josh and I entered over to the other area to sit, the anger really locked on, and tears began to well in my eyes, which is a definite indication that it has moved past me being able to think through my anger and apply a reflecting management to just think it through. Just as that happened, Joshua, who was holding my hand and rubbing my shoulder, said that I'm now sweating and immediately I realized that I had to get a handle on the anger somehow, otherwise I'm going to have an attack here in moments, because that process had just begun. CC and Missy came over after having watched a little of it but didn't know really what happened. When they came over, we all sat together in that one area; C's sat next to me through the whole service and the kids sat directly in front of us. She really helped to calm me down, and helped me to get my perspective back and coached me through the process. The head usher came and found us and apologized from the bottom of her heart and her voice was cracking while she was speaking to me so I knew that she was very upset as well and was feeling ashamed of how this whole thing had gone and how we/I were/was treated, specifically. I really appreciated her words and her candor, and her heart. She expressed that the following Sunday, those ushers will not be at that door, so my understanding is that she is moving them to a different door and there’ll be somebody else at that door and she will explain to those people that will be ushering that location at the 11:15 service, that I will be there and that's where I'll be seated, per her instructions. Now, here's the God "thing" for blatant for that morning...Pastor Cole's message was entitled "Anger" and that's what he spoke on for the morning...I actually chuckled in the midst of my anger when he spoke that. Okay, so when all that was said and done, we got through service, and then left from there and decided that we would try to do just a special family time together over lunch at Fresh Choice, though I wasn't very hungry. I didn't eat very much, plus I did not bring my salad dressing from home like I would normally do, so I knew that I shouldn't have very much salad dressing, anyway. As it stood, the meal came and went without any real problems, with the exception that as we were leaving, I was aware that my muscles were aching, much more than just the joints and the muscles were much more tender, also an indication that things are on the verge of going the wrong way. Once we got home, I hadn't been in the house more than 10 minutes before I knew that I had to lie down and get into a chair someplace quick. Moments later I was asleep and slept from 1:30 until 6:30. That kind of sleep is not restful. I am asleep, but was sweating a lot and I was aware of my surroundings even though I couldn't open my eyes. I had my oxygen on but I didn't have my CPAP on because I wasn't upstairs in the bedroom. So, several hours passed by without me having anything to show for it. Not even rest from sleeping. CC and I were trying to figure out why I crashed like I did, it was Joshua who spoke up and said, "You know what I think? I think that you had to crash because your body was weakened while we were at church when you were dealing with the usher and your body stayed in a weakened state so that when we went to Fresh Choice, that it didn't take much of the raw ingredients to push you over the edge." CC and I looked at each other and just shook her heads and gave him due credit for being a very smart and perceptive young man, who is very much in tune to his daddy.
I think this one is done for tonight, because I am very tired and can hopefully go to sleep soon.
I will share what happened on Friday and Saturday, in my next post.
Peace
Being unsure how to begin some of this re-cap, I will start with today and work my way backwards, I suppose.
I woke up this morning in less pain than I thought I would be in otherwise; a good sign and refreshing as well. Today came and went without an attack or crash, and that's good news. I have added "Crash" to my HKPP vocabulary. When I have an attack of a paralytic nature or of muscular spasmatic/cramp nature, I refer to them as a "hit" or an "attack", but when I am referring to a crash, it is generally related to, more often than not, either ingesting a higher level of sugar (a diabetic reaction) sodium, but not enough to trigger the next level or "hit". For me, I would describe crashing as having a matter of one to two minutes time to get myself into a chair or on a couch or a bed and prepared to go to sleep because my body is shutting down or crashing. Crashes also include mild isolated muscle spasms, profuse body sweats, occasional leg, foot or finger cramping and an inability to communicate with my eyes or mouth/speech. Sometimes I can make some vocal sounds (groans or brief "Mmmm.." sounds, but each crash, attack/hit is different from the next. I typically end up, more often than not, going right to sleep and I will sleep for five to seven hours during an average crash.
Today's breakfast was 2 scrambled eggs with two pieces of toast that had salted butter and some blackberry jelly on them. Also, included in the scrambled eggs was less than a quarter cup of Lucerne mild cheddar cheese, and a third of a small chicken breast (diced) that had been grilled (plain) the night before. I didn't have any snacks, but for lunch I had a turkey leg and a large glass of a Cherry/Berry/yogurt smoothie. At dinner time, I had a baked potato with some butter, some ground beef, some mild cheddar cheese and sour cream. My desert was a small portion of a pumpkin pie-type of desert, which also included some whip cream on top (I married an incredible cook!). Why all the menu diatribe? Well, if there is one thing in particular that I have learned, and we have learned, in this battle, it's that my diet is a critical factor in both triggering an attack/crash and rendering my system vulnerable to a trigger that would otherwise not set me off. The things we have to watch are my sodium intake, carbohydrate intake, direct levels of sugar and it byproducts (sweeteners), and meal sizes or portions.
Sunday, CC and the kids and I all got up in time to be able to make it very near the beginning of the church service, which is very good for us, in that it is more common that we show up 10 to 20 minutes late for the service. Anyway, we came in and we went right to the location where I have been normally sitting; in the back of the sanctuary, right beside the rear center camera booth, where the head usher had offered a place for my chair to be. And when it's not packed, CC and the kids can sit directly in front of me, or we can have even a folding chair pulled beside me so that somebody can sit with me but still be out of the aisle. This is where I have been positioned since we restarted our relationship with Capital Christian a matter of months ago. There have been times in the past where an older lady usher, who is one of the two ushers for that particular set of doors, had expressed frustration that I was taking up their space, where they would normally sit in two folding chairs, directly behind me. She would remark that they were given those seats, allocated seats, to sit during the service. Even though the back pew on the other side of that door way is generally open (5' difference), she felt that they were to sit in those chairs and my being there was not appropriate, end of story. Well, this particular morning (ok, not this morning, but this past Sunday morning), that situation escalated and it was very maddening for me. When we came in to church, I went straight in and went over to the doorway I usually go in through and the doors were open so I rolled in and got into position as Josh was with me. CC and Missy were looking for another pew to sit in because the one in front of us had people in it. While Josh and I were figuring out how to get situated, the female usher leaned over and said, in a out of patience tone and voice, that it was just not appropriate for us to sit there and it's not right. We should not sit there, that that space is for ushers only and we do not belong there; it blocks their view. After telling Joshy to pick up our stuff and go right back out, I turned my chair around (even though some folks were walking in to take their seats) and worked my way past them and went out and located the head usher who had helped us in the past and originally located THAT spot for me to sit in! I briefly explained what it taken place and what had been said. She walked over to the doorway, as we went back as well and she talked to the woman usher and then she told me to go ahead, and park my chair and I would be fine. So, Joshy and I began to get re-settled again, and once again the gal came back down in front of Joshy and me and leaned over so that I could see her very clearly and said it's absolutely not right for me to sit there and that she's going to talk to the senior pastor about this because what I'm doing is absolutely wrong. At that apologized for the bottom of her heart and her voice was cracked ahead point I had reached the end of my patience and composure and was very angry; not in the mood to even stay in church at that point. I was flying through angry thoughts and thinking "...there aren't very many places that I can sit in church, let alone in most churches or even restaurants or theaters...!" and the frustration of that reality welled up inside of me at the same time of the frustration that I have to be sitting in this chair in the first place, that I don't have the ability anymore to sit in a pew or folding chair for any real length of time. So all those things came up, and I was angry. As we were going back around to leave again, the head usher was walking back in to make sure everything was all right and I told her it was NOT alright and that I was done with it at that point, and that we were going to go sit someplace else. And so she pulled the usher out to talk with her, AGAIN, but I don't know exactly how that finished out. Joshy and I rode over to the very back rear corner in the Sanctuary, where they do have allocated space specifically for handicap folks, and it unfortunately, as you might guess, is the worst seat in the house and not the best sound either. Also, the whole area where we now were is also where many of the moms with kids come in and sit; Unfortunately for me, one of the younger-aged family cultures that attend that hour of service, rears their children very differently than we reared ours. Being in that area was much more frustrating because it's very loud and very distracting and there is little monitoring of the children as they bounce from pew to pew and up and down the aisles. So, for us to attend the church, I need to be able to be located in a place where I can focus on the pastor and focus on the worship and not be distracted.
And as it turns out, that particular usher was/is simply not willing to let it go. So, as Josh and I entered over to the other area to sit, the anger really locked on, and tears began to well in my eyes, which is a definite indication that it has moved past me being able to think through my anger and apply a reflecting management to just think it through. Just as that happened, Joshua, who was holding my hand and rubbing my shoulder, said that I'm now sweating and immediately I realized that I had to get a handle on the anger somehow, otherwise I'm going to have an attack here in moments, because that process had just begun. CC and Missy came over after having watched a little of it but didn't know really what happened. When they came over, we all sat together in that one area; C's sat next to me through the whole service and the kids sat directly in front of us. She really helped to calm me down, and helped me to get my perspective back and coached me through the process. The head usher came and found us and apologized from the bottom of her heart and her voice was cracking while she was speaking to me so I knew that she was very upset as well and was feeling ashamed of how this whole thing had gone and how we/I were/was treated, specifically. I really appreciated her words and her candor, and her heart. She expressed that the following Sunday, those ushers will not be at that door, so my understanding is that she is moving them to a different door and there’ll be somebody else at that door and she will explain to those people that will be ushering that location at the 11:15 service, that I will be there and that's where I'll be seated, per her instructions. Now, here's the God "thing" for blatant for that morning...Pastor Cole's message was entitled "Anger" and that's what he spoke on for the morning...I actually chuckled in the midst of my anger when he spoke that. Okay, so when all that was said and done, we got through service, and then left from there and decided that we would try to do just a special family time together over lunch at Fresh Choice, though I wasn't very hungry. I didn't eat very much, plus I did not bring my salad dressing from home like I would normally do, so I knew that I shouldn't have very much salad dressing, anyway. As it stood, the meal came and went without any real problems, with the exception that as we were leaving, I was aware that my muscles were aching, much more than just the joints and the muscles were much more tender, also an indication that things are on the verge of going the wrong way. Once we got home, I hadn't been in the house more than 10 minutes before I knew that I had to lie down and get into a chair someplace quick. Moments later I was asleep and slept from 1:30 until 6:30. That kind of sleep is not restful. I am asleep, but was sweating a lot and I was aware of my surroundings even though I couldn't open my eyes. I had my oxygen on but I didn't have my CPAP on because I wasn't upstairs in the bedroom. So, several hours passed by without me having anything to show for it. Not even rest from sleeping. CC and I were trying to figure out why I crashed like I did, it was Joshua who spoke up and said, "You know what I think? I think that you had to crash because your body was weakened while we were at church when you were dealing with the usher and your body stayed in a weakened state so that when we went to Fresh Choice, that it didn't take much of the raw ingredients to push you over the edge." CC and I looked at each other and just shook her heads and gave him due credit for being a very smart and perceptive young man, who is very much in tune to his daddy.
I think this one is done for tonight, because I am very tired and can hopefully go to sleep soon.
I will share what happened on Friday and Saturday, in my next post.
Peace
Sunday, March 29, 2009
Sunday night...
Sunday, March 29, 2009
Another brief entry, sorry. It's been a rough number of days now, noting that I took hits last Tuesday, Thursday, Friday and then harsh exhaustion Saturday afternoon and then a "near-miss" today while at church but followed by a "crash" after eating at Fresh Choice that left me wiped/sleeping for over 5 hours in my black chair.
My body feels so beaten and strained that *sore* isn't an effectively descriptive verb, I think...anyway, hopefully you know what I'm saying/writing.
My hope for tomorrow is to post my thoughts on the past week and bring this up to date again. This morning was extremely difficult at church (praise God for CC and Missy and Joshy who were there for me), but I'll explain more of that tomorrow. Much to share then.
Prayers for healing from these consecutive hits and that this is not an indication of a much larger hit forthcoming, which it unfortunately looks like it is...
peace tonight-
Another brief entry, sorry. It's been a rough number of days now, noting that I took hits last Tuesday, Thursday, Friday and then harsh exhaustion Saturday afternoon and then a "near-miss" today while at church but followed by a "crash" after eating at Fresh Choice that left me wiped/sleeping for over 5 hours in my black chair.
My body feels so beaten and strained that *sore* isn't an effectively descriptive verb, I think...anyway, hopefully you know what I'm saying/writing.
My hope for tomorrow is to post my thoughts on the past week and bring this up to date again. This morning was extremely difficult at church (praise God for CC and Missy and Joshy who were there for me), but I'll explain more of that tomorrow. Much to share then.
Prayers for healing from these consecutive hits and that this is not an indication of a much larger hit forthcoming, which it unfortunately looks like it is...
peace tonight-
Wednesday, March 25, 2009
A New Blog Among Us
A mentor and very dear friend of mine has created a blog and is just now beginning to post, so I want to share his blog address with you: http://dotdotdotblog.com/ is Vern Sander's blog and I expect it will become a very informative place, welcoming dialogue and even discussion, possibly, but mostly it will be a place to gather from one of the "brilliants", in my biased opinion.
I have more to share on life here in Orangevale, but it is now about dinner time and I need to get ready for dinner.
More later-
peace
I have more to share on life here in Orangevale, but it is now about dinner time and I need to get ready for dinner.
More later-
peace
Saturday, March 21, 2009
Sunday, March 15, 2009
Sunday Early Morning
It's 2:02 AM and I got up a little bit ago to get some food and then see if I can go to sleep. I took another hit yesterday (Saturday) after working in the back yard with Cs (pronounced seece). I was able to do more yesterday than I have been able to do in a year, I think, but I expected some fall out so I wasn't entirely surprised by it. What did surprise me was it being a paralysis attack and mouth control and swallowing was hard and scary. I was somewhat able to see but my eyes wouldn't focus and look where I wanted them too. I was afraid my tongue was going to fall backward and cut off my breathing/choke me, but after Cs had become aware that I was under attack, she opened my mouth and re-positioned my head into a safer position, I think.
I hate those particular attacks, especially. They cause me to feel completely vulnerable and helpless to an exaggerated extent. We will see how tomorrow is.
Friday morning and night I was inspired to create some music and I spent a number of hours creating using loops and keys and a little guitar. I feel pretty good about my efforts and plan to listen back to the ideas, sometime tomorrow; now that I write alone, I need some distance between views of the work so that I can hope for some kind of objectivity before investing anymore time on the idea...many ideas currently exist left incomplete due to lack of collaboration, more than anything else, I think.
Time for sleep, it's almost 3:00 AM.
The rain comes in this morning, kinda makes sense to me...
peace
I hate those particular attacks, especially. They cause me to feel completely vulnerable and helpless to an exaggerated extent. We will see how tomorrow is.
Friday morning and night I was inspired to create some music and I spent a number of hours creating using loops and keys and a little guitar. I feel pretty good about my efforts and plan to listen back to the ideas, sometime tomorrow; now that I write alone, I need some distance between views of the work so that I can hope for some kind of objectivity before investing anymore time on the idea...many ideas currently exist left incomplete due to lack of collaboration, more than anything else, I think.
Time for sleep, it's almost 3:00 AM.
The rain comes in this morning, kinda makes sense to me...
peace
Thursday, March 12, 2009
It is Now Time to Write (a little, anyway)
Thursday, March 12, 2009
Another attack today; actually, it was this afternoon after playing some repetitive, competitive intense Xbox. I know that sounds silly and such, but I've come to realize that the intensity with which I play Xbox (and other video games) equates directly to physical stress, which, in a typical body, would simply leave the person a bit tired or perhaps somewhat exhausted. Unfortunately, in my system, that same stress now manifests itself in the form of adrenalin that won't shut off (due to the malfunctioning adrenal glands) and potassium is no longer transferred properly or timely within my cells and thus an attack of some magnitude ensues. This attack today cost me, roughly, 4 hours on the couch with full spasms and all, but not as intense as it could have been. I'm thankful for that.
It's 11:39 PM and I went to bed over 2 hours ago, but could not fall asleep and was feeling nauseous due to skipping dinner (I was still crashed on the couch), so I got up and had some cereal and am now waiting for "sleep" to let me know that I can go to bed again and actually fall asleep this time.
Last night, I spent a few hours transferring some old demo tapes (from '87) on cassette into the computer. In fact, there were 3 sets of demos for one band I was lead vocalist for for a number of months; I was their second singer of three during the longevity of the band. In hindsight, it was a very cool experience to have undertaken and done, though I regret that we were never able to perform while I was involved. I still communicate with three of the four original members, which is very cool. It is huge to me now, to be able to connect with friends from all time periods of my life and, without a doubt, my musical landscape was cultivated and shaped by my friendships; something I did not understand or realize at the time, but I am very thankful for it now. May God richly bless you Mikey, Scott, Phil and even John (who never liked me and did not want me in the band). They were RSF (the band).
I guess I'm getting tired now.
Current favorite song is Coldplay's "Viva La Vida"
Current favorite Xbox game is "Lost Planet"
...there's more, but I'm too tired now to keep going.
Until later-
Another attack today; actually, it was this afternoon after playing some repetitive, competitive intense Xbox. I know that sounds silly and such, but I've come to realize that the intensity with which I play Xbox (and other video games) equates directly to physical stress, which, in a typical body, would simply leave the person a bit tired or perhaps somewhat exhausted. Unfortunately, in my system, that same stress now manifests itself in the form of adrenalin that won't shut off (due to the malfunctioning adrenal glands) and potassium is no longer transferred properly or timely within my cells and thus an attack of some magnitude ensues. This attack today cost me, roughly, 4 hours on the couch with full spasms and all, but not as intense as it could have been. I'm thankful for that.
It's 11:39 PM and I went to bed over 2 hours ago, but could not fall asleep and was feeling nauseous due to skipping dinner (I was still crashed on the couch), so I got up and had some cereal and am now waiting for "sleep" to let me know that I can go to bed again and actually fall asleep this time.
Last night, I spent a few hours transferring some old demo tapes (from '87) on cassette into the computer. In fact, there were 3 sets of demos for one band I was lead vocalist for for a number of months; I was their second singer of three during the longevity of the band. In hindsight, it was a very cool experience to have undertaken and done, though I regret that we were never able to perform while I was involved. I still communicate with three of the four original members, which is very cool. It is huge to me now, to be able to connect with friends from all time periods of my life and, without a doubt, my musical landscape was cultivated and shaped by my friendships; something I did not understand or realize at the time, but I am very thankful for it now. May God richly bless you Mikey, Scott, Phil and even John (who never liked me and did not want me in the band). They were RSF (the band).
I guess I'm getting tired now.
Current favorite song is Coldplay's "Viva La Vida"
Current favorite Xbox game is "Lost Planet"
...there's more, but I'm too tired now to keep going.
Until later-
Tuesday, March 10, 2009
Joshy at Sutter's Fort
Sunday, March 08, 2009
Tuesday, March 03, 2009
Abortive Attacks and Me
Tuesday, March 3, 2009
Harsh and long, drawn out attack yesterday evening that lasted into the night. I hadn't even fully recovered from the attack from a week ago. After putting some hard thought into it, I've come to the conclusion that what is happening is that I am in the midst of what is called an "abortive attack". The following is from http://www.hkpp.org:
Are Interictal Weakness and Fatigue Part of Periodic Paralysis?
Patients frequently report that their physician denies that interictal weakness and fatigue are a part of periodic paralysis. While it was reported in the past that patients with periodic paralysis had 'normal' muscle strength and were asymptomatic between episodes, it is now recognized that this is not the case for all patients.
While young patients, teenagers and those in their twenties, may well rebound from infrequent episodes, older patients, those with more frequent episodes and those who are inadequately controlled may suffer from what have been dubbed Abortive Attacks.
Daily Fluctuations in Strength
Abortive attacks are those in which there are daily fluctuations in strength, sometimes accompanied by stiffness. They may involve vague feelings of fatigue to any degree of weakness short of paralysis, but their primary feature is the length of the attack, which has been reported to be of such persistence as to be mistaken for permanent muscle weakness. (1)
80% of Patients Report Abortive Attacks
In her large study of Dutch patients Dr. Links reported that eighty percent of them complained of abortive attacks. Their weakness could at times be confirmed by dynamometry although it was not accompanied by a significant change in serum potassium. Dr. Links goes on to conclude that "... abortive attacks occur, that is, long lasting episodes with fluctuating weakness... abortive attacks are probably due to a functional disturbance of the muscle membrane. We have found that the mean strength of affected persons with HypoKPP was lower than the mean average of normals. This implies that the cause of this 'less than average strength' could be the same as the cause of abortive attacks." (2,3)
Abortive Attacks May Be More Disabling Than Paralytic Attacks
This demonstrates the effect many patients describe of weakness following effort which limits to some extent daily activity. This effect seems to increase with age and while the weakness may not resolve in paralysis it tends to linger for a longer period of time. This lack of outright paralysis has led to some researchers concluding that attacks disappear with age. It is probably more accurate to say that attacks change in character. Abortive attacks which linger for days or even weeks on end may be more disabling than brief paralytic ones.
Abortive Attacks are Amenable to Treatment
The distinguishing factor between the Abortive Attack and permanent muscle weakness is that Abortive Attacks are amenable to treatment, where permanent muscle weakness is not. If a patient is complaining of fatigue and weakness between episodes of paralysis consider more aggressive management strategies, i.e. more control of diet and appropriate therapies.
SO, after all of that, I hope I have shown some light on what is going with me at this point. Also, I am happy to share the sources for the all of the above information, should anyone ask for it or request it.
I was down for the whole day and ate sparingly with the snacks being small oranges, a banana and an apple. This afternoon, after i woke up from an extended nap, CC asked Josh and Jayden to play Scrabble, so I decided to join in as well. When Jayden's mom arrived to pick his sister and him up, we began a new game with just the four of us (CC, Missy, Joshy and me). I cannot remember the last time we all played a game together (I think it was Candy Land, but I don't remember when...) and we found this game tonight to be lots of fun for the four of us. Why no Xbox you ask? Because I decided that certain children's *dispositions* were seemingly hinging on when and how long they could play Xbox and I felt that the **privilege** of playing it had become an expectation of highest priority; something I had suggested could possibly become a reality if *said* children's perceptions and goals were to become skewed and polarized incorrectly. Xbox is now playable M,W,F,S,S as long as the re-focus proves positive and productive in both time management and disposition, a.k.a., attitude or 'tude. The rumor mill has been heard to say that IF there is ANY attitude during this time that the Xbox days will shift to Tuesday and Thursday only, with a possible Saturday with dad only. So far, no attitude...go figure.
Monday, before things got bad on my end, HKPP-wise, Joshy taught me how to play chess!...and I liked it, too. That was one of his Christmas gifts to me; to teach me how to play chess so we can play it together.
I'm thinking of other things I want to share, but I am fast running out of steam.
Here are three of them, in brief:
Long, long ago, when I was a naive Christian, *** "na⋅ive"
Spelled Pronunciation [nah-eev]
–adjective
1...having or showing a lack of experience, judgment, or information; credulous: She's so naive she believes everything she reads. He has a very naive attitude toward politics.***
I graduated from high school and then took a summer job at the famed Christian Camp, Westminster Woods, in Sonoma County. The story of that experience will wait for now, but an aspect of it won't. That is, on my first day there, I met a guy my age named Bob Stewart, and by the time I left the Woods, some 12 weeks later, Bob had become a very close, good and loyal friend who made me laugh nearly every single day and managed to keep my sanity and even help prevent me from loosing my cool and possibly my job. He was my best friend while I was there and my heart warms as I think of the escapades we created and survived, all the while, laughing. Anyway, as we were getting ready to leave the Woods at the end of the summer, I asked Bob what he wanted to do for the next chapter in his life and he said "I want to jump out of perfectly good airplanes." I knew what that meant and I was not thrilled at the thought of him putting his life on the line overseas somewhere, but I knew that it was his calling and I was able to cope with that. I lost touch with him shortly thereafter and have only hoped that he was alright, safe and sound and happy. This past week I got an email from him via Facebook and we are once again communicating. I am so, so very proud of my brother and friend who has been living his dream to jump out of planes and he has unquestionably made a difference and had an impact in the war in Afghanistan. I do have my heroes, and Bob is one of them.
Also last week, two other friends from *back then* contacted me via Facebook; my dear friend Jim "Snowman" Snow, former lead guitarist, vocalist and songwriter for the Orange County band "The Innocent" (as well as my replacement in Forthright when I left in 1991) and Wallace Helms, drummer, vocalist and songwriter for our band Forthright for the 3 or so years I was in the band (he also did a ton of other stuff for the band too...). Wallace and I were the two lead vocalists of the band and the primary arrangers of the songs we did. We were very close and good friends, like brothers, while we were in the band together (Wallace sang "I can't Fight This Feeling Anymore" during my wedding, to Sam Harman's piano accompaniment) but after CC and I moved to the Bay Area in the summer of 1991, Wallace and I eventually lost contact and communications when he moved to Tennessee. My sadness over this disconnect was deep and long lasting and I have always wanted to reconnect and carry on and now I'm encouraged to hopefully do so. So much to talk about over so much time...
Restoration can come in a variety of significant forms.
Time to do a quick scan over this and edit and then post it and go to bed; when the bell rings tomorrow morning, I want to be able to come out of the corner ready to swing...
peace-
Harsh and long, drawn out attack yesterday evening that lasted into the night. I hadn't even fully recovered from the attack from a week ago. After putting some hard thought into it, I've come to the conclusion that what is happening is that I am in the midst of what is called an "abortive attack". The following is from http://www.hkpp.org:
Are Interictal Weakness and Fatigue Part of Periodic Paralysis?
Patients frequently report that their physician denies that interictal weakness and fatigue are a part of periodic paralysis. While it was reported in the past that patients with periodic paralysis had 'normal' muscle strength and were asymptomatic between episodes, it is now recognized that this is not the case for all patients.
While young patients, teenagers and those in their twenties, may well rebound from infrequent episodes, older patients, those with more frequent episodes and those who are inadequately controlled may suffer from what have been dubbed Abortive Attacks.
Daily Fluctuations in Strength
Abortive attacks are those in which there are daily fluctuations in strength, sometimes accompanied by stiffness. They may involve vague feelings of fatigue to any degree of weakness short of paralysis, but their primary feature is the length of the attack, which has been reported to be of such persistence as to be mistaken for permanent muscle weakness. (1)
80% of Patients Report Abortive Attacks
In her large study of Dutch patients Dr. Links reported that eighty percent of them complained of abortive attacks. Their weakness could at times be confirmed by dynamometry although it was not accompanied by a significant change in serum potassium. Dr. Links goes on to conclude that "... abortive attacks occur, that is, long lasting episodes with fluctuating weakness... abortive attacks are probably due to a functional disturbance of the muscle membrane. We have found that the mean strength of affected persons with HypoKPP was lower than the mean average of normals. This implies that the cause of this 'less than average strength' could be the same as the cause of abortive attacks." (2,3)
Abortive Attacks May Be More Disabling Than Paralytic Attacks
This demonstrates the effect many patients describe of weakness following effort which limits to some extent daily activity. This effect seems to increase with age and while the weakness may not resolve in paralysis it tends to linger for a longer period of time. This lack of outright paralysis has led to some researchers concluding that attacks disappear with age. It is probably more accurate to say that attacks change in character. Abortive attacks which linger for days or even weeks on end may be more disabling than brief paralytic ones.
Abortive Attacks are Amenable to Treatment
The distinguishing factor between the Abortive Attack and permanent muscle weakness is that Abortive Attacks are amenable to treatment, where permanent muscle weakness is not. If a patient is complaining of fatigue and weakness between episodes of paralysis consider more aggressive management strategies, i.e. more control of diet and appropriate therapies.
SO, after all of that, I hope I have shown some light on what is going with me at this point. Also, I am happy to share the sources for the all of the above information, should anyone ask for it or request it.
I was down for the whole day and ate sparingly with the snacks being small oranges, a banana and an apple. This afternoon, after i woke up from an extended nap, CC asked Josh and Jayden to play Scrabble, so I decided to join in as well. When Jayden's mom arrived to pick his sister and him up, we began a new game with just the four of us (CC, Missy, Joshy and me). I cannot remember the last time we all played a game together (I think it was Candy Land, but I don't remember when...) and we found this game tonight to be lots of fun for the four of us. Why no Xbox you ask? Because I decided that certain children's *dispositions* were seemingly hinging on when and how long they could play Xbox and I felt that the **privilege** of playing it had become an expectation of highest priority; something I had suggested could possibly become a reality if *said* children's perceptions and goals were to become skewed and polarized incorrectly. Xbox is now playable M,W,F,S,S as long as the re-focus proves positive and productive in both time management and disposition, a.k.a., attitude or 'tude. The rumor mill has been heard to say that IF there is ANY attitude during this time that the Xbox days will shift to Tuesday and Thursday only, with a possible Saturday with dad only. So far, no attitude...go figure.
Monday, before things got bad on my end, HKPP-wise, Joshy taught me how to play chess!...and I liked it, too. That was one of his Christmas gifts to me; to teach me how to play chess so we can play it together.
I'm thinking of other things I want to share, but I am fast running out of steam.
Here are three of them, in brief:
Long, long ago, when I was a naive Christian, *** "na⋅ive"
Spelled Pronunciation [nah-eev]
–adjective
1...having or showing a lack of experience, judgment, or information; credulous: She's so naive she believes everything she reads. He has a very naive attitude toward politics.***
I graduated from high school and then took a summer job at the famed Christian Camp, Westminster Woods, in Sonoma County. The story of that experience will wait for now, but an aspect of it won't. That is, on my first day there, I met a guy my age named Bob Stewart, and by the time I left the Woods, some 12 weeks later, Bob had become a very close, good and loyal friend who made me laugh nearly every single day and managed to keep my sanity and even help prevent me from loosing my cool and possibly my job. He was my best friend while I was there and my heart warms as I think of the escapades we created and survived, all the while, laughing. Anyway, as we were getting ready to leave the Woods at the end of the summer, I asked Bob what he wanted to do for the next chapter in his life and he said "I want to jump out of perfectly good airplanes." I knew what that meant and I was not thrilled at the thought of him putting his life on the line overseas somewhere, but I knew that it was his calling and I was able to cope with that. I lost touch with him shortly thereafter and have only hoped that he was alright, safe and sound and happy. This past week I got an email from him via Facebook and we are once again communicating. I am so, so very proud of my brother and friend who has been living his dream to jump out of planes and he has unquestionably made a difference and had an impact in the war in Afghanistan. I do have my heroes, and Bob is one of them.
Also last week, two other friends from *back then* contacted me via Facebook; my dear friend Jim "Snowman" Snow, former lead guitarist, vocalist and songwriter for the Orange County band "The Innocent" (as well as my replacement in Forthright when I left in 1991) and Wallace Helms, drummer, vocalist and songwriter for our band Forthright for the 3 or so years I was in the band (he also did a ton of other stuff for the band too...). Wallace and I were the two lead vocalists of the band and the primary arrangers of the songs we did. We were very close and good friends, like brothers, while we were in the band together (Wallace sang "I can't Fight This Feeling Anymore" during my wedding, to Sam Harman's piano accompaniment) but after CC and I moved to the Bay Area in the summer of 1991, Wallace and I eventually lost contact and communications when he moved to Tennessee. My sadness over this disconnect was deep and long lasting and I have always wanted to reconnect and carry on and now I'm encouraged to hopefully do so. So much to talk about over so much time...
Restoration can come in a variety of significant forms.
Time to do a quick scan over this and edit and then post it and go to bed; when the bell rings tomorrow morning, I want to be able to come out of the corner ready to swing...
peace-
Subscribe to:
Posts (Atom)
In This Body: Living with HKPP through Faith and Love of family & community with Wade Odum This was recorded on March 19, 2024 On today...
-
Wednesday, August 08, 2007 I’m back at home on my bed. It hurts to walk and stand and I’m more than tired. No sleep while we stayed at Rosev...
-
Thursday, May 03, 2007 Pretty tired. Kind of long day with only one point of light headedness. My productivity was in emailing and research...
-
4-23-2018 Well, hello there. Pushing towards 2 years of absence from my own blog...I'm frustrated that I haven't kept this ...