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Thread: Man of Mystery

  1. #11
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    Great to hear the bed is working out. What a plus to be able to get Jon up more often. Praying that his temp.stays down.
    Mary Grace

  2. #12
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa & Mary Grace))))))

    Thank you for your positive thoughts and prayers. So far today, Jon's temp has hovered around 99, and I've noticed that his urine output has slowed down. It did the other day when he was at 101. Hmmm ... is the fever making him dehydrated, or is something going on with his bladder causing the slow down, thereby creating a fever? His nightly output has been great, just day time, he slows down. He's retaining fluid in his gut.

    Jon is staying up in his bed, requiring less pulling up. We hope this lasts!

    I made it through the root canal and deconstruction/reconstruction of two teeth, which will be the "bridge holders." The worst part was the scaffolding the dentist used to keep my mouth open for 2 1/2 hours. At least it looked and felt like scaffolding! Plus a green "dental dam." I happened to catch a glimpse of myself in the mirror, when I got up to go to the other room for an x-ray. That was a mistake. Pretty doggone scary!

    Next week, I get to do it all again, as I have another root canal!!! This is what I get for not being able to see the dentist for 6 years.

    When I got home from the dentist, I made Tzatzki dip (Greek yogurt with shredded cucumber, garlic, dill weed, lemon juice, and olive oil). I have to eat yogurt to stave off yeast from the antibiotics. I'm not a big yogurt fan, but I enjoy it this way or Indian Raiti.

    Jon's nurse cancelled for tomorrow, because she was given a 4 hour infusion patient in south county. One of the infusion nurses on our team was in a car accident and will be off work for at least 3 months. So, Jon's catheter change will occur next Monday. We get a break!!

    Moving forward ... at a snail's pace, but a snail's pace is still moving.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  3. #13
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    funnylegs4 ~ Your guess is a good one, as Jon is hypothyroid and going through his middle aged manhood changes possibly. Who knows for sure when that starts, but it's typically in the 40's and it seems to last for eternity!

    For women, it's peri-menopause followed by menopause, followed by post menopause. For me, peri-menopause was far worse than menopause, which was worse than post menopause, but all of it was better than the alternative, if you get my drift. And none of it was really that bad. I eat soy and use wild yam, and that has been sufficient to keep me somewhat stable. And Jon does have an enlarged prostate, so that plays into the mix.

    Good point about the genes. Of course, we don't have an etiology, but my boys' condition is presumed genetic, for obvious reasons. And they have been seen by some famous geneticists from around the globe, when they were toddlers and enrolled at a university multi-disciplinary program. Of course that was nearly 40 years ago, and a lot has changed in genetics. We just haven't chosen to pursue it.
    I know what a pain hormones can be. My family has done the whole menopause thing. Good thinking with the soy and yams!! My monthly circle is no picnic either. It drives my CP into a kind of spastic over drive and my pelvis hurts like hell from all the muscle tension/cramping. I don't know why it makes my CP symptoms worse. I wish I knew. They can map the whole human genome now. If you want answers I would suggest taking a sample of Jon's spit and sending it to a place that does genome mapping. I'm almost sure they could find something with the advances these days.

    So glad the bed finally came!!! It sounds like a good one. Certainly try to get Jon out of bed whenever possible. A change of scenery is good for anyone.

    Sorry about the extra root canal hon. Ouch! Try Chobani Greek yogurt. http://chobani.com/products/ I'm not big on yogurt but that stuff is GOOD!!
    Last edited by funnylegs4; 06-21-2013 at 04:40 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  4. #14
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    ((((((funnylegs4))))))

    I can't imagine coping with the monthly visitor, while also coping with CP. I spent most of those years curled up in a fetal position, with a heating pad, and a lot of moaning. So, my dear friend, I send you a ton of sympathy and empathy. To me it makes perfect sense that cramping worsens your CP. Oh, my heart goes out to you.

    Soy and wild yam really saved me through menopause. I ate soy nuts when I started feeling funky, and within minutes, I began to feel better. HRT's scare me. At that time, the TV newscasts were trading stories: HRT Causes Uterine Cancer; Breast Cancer then Biomedical Alternatives Are Ineffective, Cause Bone Loss.

    I remember standing in front of the TV one night, in full menopausal mode, with my hands on my head, practically screaming, "MAKE THEM STOP!"

    "Which is it? HRT is bad for you? HRT is good for you? I'm menopausal, and that means I'm confused to begin with!"

    Jim just stared at me, then took my hand and said, "Eat some nuts, honey."

    Genome mapping? Wow! I will investigate that!

    Jon's bed is still Numero Uno for us at this point. It is so easy to pull him up in the bed now. And we do that far less with this new bed.

    Thank you for the yogurt recommendation. We'll have to look for it in our grocery (which has limited stuff, it seems).

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  5. #15
    Administrator/SYSOP Mike Weins's Avatar
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    Mike ~ Jon drinks bottled water, to which we add Real Salt to keep his sodium levels in a decent range. We live near a former Superfund toxic waste dumpsite, and I never will trust our groundwater, even though we're told some of it is imported (and I worked in environmental engineering, so I know what's in that) and some of it is well water.
    I thought I had replied to this already I'm not a huge fan of bottled water either. Usually it's just tap water run through a cheap 2 stage filter. If I could afford it I would have a whole home filter installed. Custom made with charcoal, activated alumina, crushed coral, and a UV (ultra violet) filter to sterilize the water (should be placed after the other filters). The charcoal and alumina will filter out chlorine, flourides, and most other "bad" chemicals leached into the water supply. The crushed coral acts as a pH balancer while the UV light kills off bacteria and microbes.
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  6. #16
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Mike))))))

    Would the system you describe filter out toxic waste from 1940's aircraft fuel? Purportedly, the EPA claims that this waste is now "contained," and no longer a threat to us. It was a threat to us for 25 years, but now it's just fine. So good, in fact, that the golf course expanded over the containment area. I do not and will not ever believe their claims.

    We also live on top of defunct oil fields, where once the wells bobbed day and night, sucking the precious fossil fuel out of our Earth. Is your system up to filtering that? The tar pits?

    I'm sure that you are absolutely right about bottled water, but I choose it over whatever might be coming out of our tap.

    My dad installed a reverse osmosis in his last home, and they lived in the desert. My dad, an engineer, knew they lived near an AF base and testing grounds. He designed a rather complex system, such perhaps as you're describing, to filter their water, and he had his water tested in 3 separate labs. He was quite proud of the results.

    Unfortunately, as pure as his water was, it wasn't sufficient to cure his lung cancer, probably mesothelioma, although that hadn't been discovered then, from his many years of exposure to asbestos during the war, and overseeing engineering projects for the defense industry.

    In the 1950's, my dad designed a rocket seal, which saved the government millions of dollars, and solved a significant flaw in rocket design. In the 1980's, my dad redesigned Michael's stationary wheelchair to make it recline, using a simple pin in place.

    I wish I had his reverse osmosis system! Then I could stop worrying about our water!

    How many brands of water does the Nestle Corporation have? I don't know. The list seems endless.

    http://www.nestle-waters.com/brands/all-brands

    Water. We can't live without it. And so many corporations are making a fortune off of us for that precise reason.

    I'm thirsty.

    Thanks, Mike!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  7. #17
    Administrator/SYSOP Mike Weins's Avatar
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    {{{Rose}}}

    No it wouldn't filter out the tar pits, it might be able to filter out the jet fuel though. I don't blame you for not using tap water, even if you didn't have those 2 huge risks lurking underground. I also wouldn't believe the city or feds if they said it was safe to drink Your dad sounds like an awesome person :)

    So we know that you are happy with the new bed, is Jon happy with it as well? (didn't want to completely derail the thread )
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  8. #18
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Mike))))))

    How can you derail this thread? We've talked about a variety of topics here, which I love! It's like a real conversation!!!

    My dad was probably brilliant in some ways. He excelled in his career without a college education, not uncommon for most WWII veterans. He started attending night classes at the junior college, at the same time that I was attending there. That changed him and opened his eyes, so he could start seeing the world a little more clearly through my eyes. The 60's was an unhinging era. That staid establishment of my parents' generation was discarded completely. So, it took them a long time to accept that change.

    Jon is very happy with his new bed! He appreciates being upright and not slumped over and sliding down to the footboard. And, anything, which is better for us, as his careproviders, is good for him. It can't be fun for him to hear us grunt and groan when we move him. With the ease of moving him in this bed, no more grunting and groaning.

    His nurse will visit tomorrow for his catheter change, and we'll be addressing Jon's mysterious fevers. His temp is fine today, but his SATS have been on the low side. Baffling ...

    Be sure to check out the Super Moon tonight! Closest to Earth until August 2014 (I think?!). Hope it brings good things to us all.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  9. #19
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((funnylegs4))))))

    I can't imagine coping with the monthly visitor, while also coping with CP. I spent most of those years curled up in a fetal position, with a heating pad, and a lot of moaning. So, my dear friend, I send you a ton of sympathy and empathy. To me it makes perfect sense that cramping worsens your CP. Oh, my heart goes out to you.

    Soy and wild yam really saved me through menopause. I ate soy nuts when I started feeling funky, and within minutes, I began to feel better. HRT's scare me. At that time, the TV newscasts were trading stories: HRT Causes Uterine Cancer; Breast Cancer then Biomedical Alternatives Are Ineffective, Cause Bone Loss.

    I remember standing in front of the TV one night, in full menopausal mode, with my hands on my head, practically screaming, "MAKE THEM STOP!"

    "Which is it? HRT is bad for you? HRT is good for you? I'm menopausal, and that means I'm confused to begin with!"

    Jim just stared at me, then took my hand and said, "Eat some nuts, honey."

    Genome mapping? Wow! I will investigate that!

    Jon's bed is still Numero Uno for us at this point. It is so easy to pull him up in the bed now. And we do that far less with this new bed.

    Thank you for the yogurt recommendation. We'll have to look for it in our grocery (which has limited stuff, it seems).

    Love & Light,

    Rose
    Thanks. It makes doing all therapy exercises nearly impossible during my monthly gift and because it's hard to do therapy the tension all over gets worse. Thank goodness it only lasts for a short time. Those hormone replacements are awful. You did the right thing. If you know a doctor who works in genetics they could probably direct you to the right place. You're welcome! Most grocery stores(even if they are limited) carry Chobani. It's pretty popular.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  10. #20
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    Hi Rose,

    I am wondering if this is hormone related just like when women go through their change this could be the same thing happening to John. Has John had a wada test this will tell what
    is triggering the sz. you might want to look into that. I know that high fevers can trigger sz. causing more electrical activity in the brain. Try "cold water therapy" and see what happens
    I was in a medical study a couple of yrs. ago and I had to take my temperature 3 times a day at the same time and each time I had a sz. then write down what my temp. was along with
    the time. Then I was told to put a cold washcloth on my face 3 times a day at the same time along with anytime I started to feel a sz. begin the cold water in turn calmed the neurons down
    and stopped the sz. The Drs. looked at my chart and found each day that I had any sz. my temperature was higher than normal before I had any sz. and this could be what's going on with John.
    Give him vitamin B12 1000 mcg. once a day and have him start eating almonds or lightly salted peanuts this helped reduce my sz. also. I wish John and you the best of luck and May God Bless
    You Both!

    Sue

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