Oh! Thanks so much for letting me know about Patricia Mathew's prayer request-- I'd missed it so far, and it looks quite serious! I already added it to the list.
(Pat, I'm replying here on purpose rather than directly to your comment as, if it's okay, I'd like to ask you to edit your comment to remove my daughter's name from public view.)
I did get the letter from Kompira, though perhaps a little later than you as I hadn't gotten around to informing them of my new address yet. I'm so happy that your electrosensitivity has gotten so much better, and I would be delighted to have you over whenever it's convenient!
We're actually considering the possibility that my daughter's condition might be being made worse by electrosensitivity-- energy workers have noted that it seems that the normal energies centered at a person's head seem to be dispersed in a much larger sphere than normal, so we think she may be making contact with everything around her more easily, including electrical offenders like Wi-fi and smartphones. We're actually getting an old fashioned cable internet installed into the house, which will go only into my music room, and the wi-fi in the house, when we choose to turn it on, will only have its source from a small transmitter hooked up to that line. May I ask you, which affects you more strongly, 3G from smartphones or wi-fi? I know that the dread 5G is the devil's work and the next time I get a new phone I'll try to choose one that allows me to set it to 3G, if such a thing is possible. Given our current workflow in the house, my wife orders organic groceries by mail regularly and, since it's in the midst of childcare, she does it with one hand on her phone. I guess if necessary we'll find a way to adjust our system...
My father found a medication that works to keep him mobile that doesn't have incapacitating side effects (like the first one he tried), and he's doing yoga again. He fell in love with yoga in retirement and even trained for a certification and became a part time yoga instructor-- but not really since Covid, since he mainly taught in nursing homes. and certainly not since the arrhythmia started. So he's active again, and is somewhat close to his old self in appearance, but doesn't have quite the same vitality. Divination suggests it's best to keep him on the prayer list, so I do.
My daughter has been having a tough time of it lately. I think part of it is that she's consciously realizing more and more that she can't move when the paralysis times come. And unfortunately, very often when she's feeling so stressed, one of her three-day paralysis periods on one side will suddenly become another three-day period on the other side. Not only that, but she's no longer accepting being carried around on our backs any more during these periods, so when I'm not around (and I work most days) it's a bit difficult for my wife to do anything at all except care for her at these times. One very good development, though, is that we've discovered, close enough for us to go, a wonderful-seeming nursery/kindergarten for special needs kids that bases its methods on Rudolph Steiner's ideas both about education and special needs care. There's only six spots in the school, but we've managed to get a place. Let's put it this way: every day begins with parents doing a bit of biodynamic farming with the children in front of the school. Then parents part ways as the children have their feet submerged in hot water. It sounds heavenly! I think that's going to be very good for my daughter, and will finally give my wife a break-- or just the ability to do a little bit of housework-- as she's been really imprisoned by this situation for the last couple of years, as I suppose is likely often the case at first with many special needs children.
My biggest quandary right now is medical. We've now gotten the official pronouncement of Alternating Hemiplegia of Childhood, and so the doctor wants to give medication, which is taken I forget how many times daily, which is supposed to help to suppress the paralytic symptoms. "Side effects are rare" but they certainly exist, and as we all know, sometimes there are side effects which aren't so obvious, if only in changing one's perceptions in an unnatural way. My wife and I are generally against medical intervention, especially if it involves being hooked to a medication more or less indefinitely. The reason I am considering it is that not only it has the possibility of sparing my daughter a lot of hardship; it might also allow her to finally learn how to walk, at this pivotal time in her physical development, which has been heavily slowed due to her constant paralysis.
Anyway, that's the current situation, and I share it here both with you and anyone else who is reading.
no subject
(Pat, I'm replying here on purpose rather than directly to your comment as, if it's okay, I'd like to ask you to edit your comment to remove my daughter's name from public view.)
I did get the letter from Kompira, though perhaps a little later than you as I hadn't gotten around to informing them of my new address yet. I'm so happy that your electrosensitivity has gotten so much better, and I would be delighted to have you over whenever it's convenient!
We're actually considering the possibility that my daughter's condition might be being made worse by electrosensitivity-- energy workers have noted that it seems that the normal energies centered at a person's head seem to be dispersed in a much larger sphere than normal, so we think she may be making contact with everything around her more easily, including electrical offenders like Wi-fi and smartphones. We're actually getting an old fashioned cable internet installed into the house, which will go only into my music room, and the wi-fi in the house, when we choose to turn it on, will only have its source from a small transmitter hooked up to that line. May I ask you, which affects you more strongly, 3G from smartphones or wi-fi? I know that the dread 5G is the devil's work and the next time I get a new phone I'll try to choose one that allows me to set it to 3G, if such a thing is possible. Given our current workflow in the house, my wife orders organic groceries by mail regularly and, since it's in the midst of childcare, she does it with one hand on her phone. I guess if necessary we'll find a way to adjust our system...
My father found a medication that works to keep him mobile that doesn't have incapacitating side effects (like the first one he tried), and he's doing yoga again. He fell in love with yoga in retirement and even trained for a certification and became a part time yoga instructor-- but not really since Covid, since he mainly taught in nursing homes. and certainly not since the arrhythmia started. So he's active again, and is somewhat close to his old self in appearance, but doesn't have quite the same vitality. Divination suggests it's best to keep him on the prayer list, so I do.
My daughter has been having a tough time of it lately. I think part of it is that she's consciously realizing more and more that she can't move when the paralysis times come. And unfortunately, very often when she's feeling so stressed, one of her three-day paralysis periods on one side will suddenly become another three-day period on the other side. Not only that, but she's no longer accepting being carried around on our backs any more during these periods, so when I'm not around (and I work most days) it's a bit difficult for my wife to do anything at all except care for her at these times. One very good development, though, is that we've discovered, close enough for us to go, a wonderful-seeming nursery/kindergarten for special needs kids that bases its methods on Rudolph Steiner's ideas both about education and special needs care. There's only six spots in the school, but we've managed to get a place. Let's put it this way: every day begins with parents doing a bit of biodynamic farming with the children in front of the school. Then parents part ways as the children have their feet submerged in hot water. It sounds heavenly! I think that's going to be very good for my daughter, and will finally give my wife a break-- or just the ability to do a little bit of housework-- as she's been really imprisoned by this situation for the last couple of years, as I suppose is likely often the case at first with many special needs children.
My biggest quandary right now is medical. We've now gotten the official pronouncement of Alternating Hemiplegia of Childhood, and so the doctor wants to give medication, which is taken I forget how many times daily, which is supposed to help to suppress the paralytic symptoms. "Side effects are rare" but they certainly exist, and as we all know, sometimes there are side effects which aren't so obvious, if only in changing one's perceptions in an unnatural way. My wife and I are generally against medical intervention, especially if it involves being hooked to a medication more or less indefinitely. The reason I am considering it is that not only it has the possibility of sparing my daughter a lot of hardship; it might also allow her to finally learn how to walk, at this pivotal time in her physical development, which has been heavily slowed due to her constant paralysis.
Anyway, that's the current situation, and I share it here both with you and anyone else who is reading.