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Thread: CN Central: DECEMBER UPDATES

  1. #21
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    Hi Mary Grace, I'd love to see your videos but my computer shows an error saying "URL expired" ? Sorry!!! I'm sure she is doing great! Thanks for your advice! Glad you got my pm and hope you enjoy the show.

    Rose, Ah so that's what a condom cath is. Interesting. Thanks! I'm sorry for the med screw ups. The labs made similar mistakes when I had my surgeries and it frustrated me to no end. So I know how you feel! Praying for no seizures!

    Thanks to both of you for your advice on my teacher. I know I shouldn't worry so much. The stubborn aspect to his personality is part of why I worry. He's driven which is why he is progressing as fast as he is but there are moments where he doesn't pay attention to his body like he should. His life was spent depending on his intellect but now he must depend on his body for answers. For example he would walk fast but this would wear him out and cause his symptoms to kick in. As I may have mentioned earlier, I fully understand why he is doing this because I thought I had to be like the able bodied so I'd walk fast and then my brain would get upset with me too. I was finally convinced by my therapists that it was okay if I walked slow and to not try to conceal the symptoms. We tell him to slow down and take it easy. Sometimes he does listen and other times if he has a good day he goes to far again. As a result one day he'll look and act normal but the next day he'll look awful. When he feels awful he tries to hide it.

    It's mostly on the bad days when his eyes start rolling. When this happens he becomes pale. Then after it's like all his energy is zapped out of him and he looks drained. It's extremely frightening to watch because I saw him 2 days before the stroke and he looked pale then too. I never allow him to see that I'm afraid. I just let him deal with it while staying close by in case he gets to a point where he needs help. I'm still amazed at how calm he is when he gets dizzy and that helps me not to freak.

    I guess I keep going over these moments in my mind because I'm not even sure if all of this is really happening, you know? Like what the heck is happening to my poor teacher's brain? Am I really seeing his eyes move??? Or is this just some nightmare/dream that never happened? I wish there was a way to undo the brain damage fully, for his sake. I know there isn't. What is, is what is, like with Cerebral Palsy. I know he will regain function with time,patience and neuroplasticity and he will learn to live this way like I have from birth. He will be okay.

    I took your advice and googled what he is describing to me. It's hard to find info on his type of stroke which is why I kept asking questions…it seems very rare. But what I was able to find out was that his eye movements are most likely the dizzy spells mixed with the same kind of involuntary eye movement I have from my brain damage…I hope it doesn't look as creepy as his when I do it. If it does I probably kinda freak people out. Including him LOL. The articles said the part of his brain that was damaged shares signals with the part of my brain that's damaged so I imagine his dizzy spells probably feel like when I feel disorientated on escalators. It's an awful sensation but in my case I can stay away from the thing that causes it so I never have a problem with dizziness. The articles also mentioned that the involuntary eye motions could develop into something called "gaze palsy" where he'd have weird eye movements for the rest of his life from the stroke. Stroke can be genetic too especially if caused by another genetic problem. I hope you don't mind me blabbing my emotions out here again. We are all on holiday now so I hope he rests!

    As if the stroke wasn't enough somebody else I know almost died when they choked the other day! It was serious. They felt dizzy afterwords and trembled violently because the choking caused a small loss of oxygen to their brain. Hopefully no permeant damage was done! Can you pray for them too please? At least I knew how to deal with the dizziness from when my teacher went through it in class. That's another unexpected gift from my teacher. Both these experiences where I have observed the nervous systems of others cope in order to survive helped me understand my own nervous system and how it coped when I got my CP. But I'm still like "WHAT IS GOING ON AROUND HERE?!" My hip flexers are tighter from the stress.

    On a much happier note I am finally making progress on those Christmas gifts. Only a few more to go!
    Last edited by funnylegs4; 12-17-2015 at 08:46 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  2. #22
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((funnylegs4)))))) ~

    I'm glad that you are sharing your experiences with us. That's why we're here! Don't hesitate to share, because you need to express all of this, and maybe we can offer some insight and definitely support to you.

    It seems that you discovered some great information from your Google search. I only suggested it to you, because I don't know very much about strokes, and the kind of information you're seeking is probably best for you to learn through research.

    Your correlation of your teacher's experiences, as well as your friend, who choked, to your own experiences, is an education for you. Perhaps you are having some kind of an awakening through others, who are near and dear to you. Perhaps your life long experiences are intended to help them with their challenges. We already know this is true through your films.

    And as a filmmaker, every one of these experiences will inform your art and guide your future direction in your art.

    Life is just one learning experience after another and another and another ... You are gaining new perspectives and insight.

    You were born with a disabling condition. Now you are witnessing the transformation of a person, who is becoming disabled as an adult. You are recognizing the vulnerability of each of us ~ that at any moment, we could experience a trauma or brain injury, which could render us unable to do what we once were able to do.

    All of this is contributing to your well of wisdom as you age. Years from now, you will reflect upon these experiences and realize that they were building blocks to knowledge and understanding.

    Keep doing what you're doing with your teacher. He will learn his pace, with your gentle assistance. And the holidays allow him time to rest, which is important to healing.

    Congratulations on your Christmas shopping. It's always a great accomplishment, but I think we pressure ourselves too much during the holidays. Well, at least I do.

    Merry Christmas!

    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.

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  4. #23
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    Rose so glad you got the report and you were able to adjust the meds as YOU know you should. Kind if scary though...
    Funnylegs, I agree with Rose please keep sharing your experiences it helps you and us. It makes it so much easier to deal with the stress if you can share it. It osunds like your teacher is doing pretty well considering it hasn't been all that long since his stroke. Some people (like Kathleen) have a lifetime of recovery some will have a complete recovery but either way time allows a person to live with either scenario. Even after 13 years we sill don't give up and expect big things but accept anything. I am a firm believer that everything happens for a reason. Sharing your experiences gives reason. I share Kathleen's story every chance I get because strokes so young and moyamoya are pretty rare. I hope your shopping continues to go well. I have lots more to do but it will get done.

    Kathleen saw the endocrinologist. She spent an hour with us going over Kathleen's history and she'll follow her every 6 months. We will get some blood work done over vacation and go from there.
    Mary Grace

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  6. #24
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    Thanks Rose! You are absolutely right! I have had awakenings for sure! I have felt from a young age that my Cerebral Palsy had a special purpose to it. When I started making films I began to understand this purpose a lot more. Looking back, once my teacher had the stroke I felt I had to help him…like we were drawn together at the exact moment he needed me most. I wasn't even supposed to end up in his class at first but got lucky so it must have been destiny. He had seen my films just a few short days before he had the stroke. I knew I had to do something…but I simply did not know how. I felt like I had barely done anything to help him but recently he said "I have learned a lot from you" and expressed that my films made him more comfortable talking about the stroke. I mentioned him expressing this to me at the end of this film blog post here http://cripvideoproductions.tumblr.c...not-seen-drama I was like "But what could I have possibly taught you??! It's YOU who have taught me so much more!" Hearing him say that let me know I had done something right! I felt like my work had fulfilled a much larger more important purpose than I ever could have imagined! This work isn't for me at all! It is for everybody else! I can help people and guide them via my films. As I may have mentioned here or in the other blog post, I feel like I want to write a film, play, or story sometime soon about how my teacher had that stroke because it taught me so much and so many different emotions came up in me and others around him.*It changed my whole outlook on everything I was ever taught about disability. Half the stuff I thought I knew turned out to be a bunch of crap. Excuse my language there! My bad! I'm thinking of making changes to an old existing story and adding new elements to it. This would protect everyone's privacy and change enough of the details so no one could be identified or embarrassed or angry. My teacher wouldn't mind anyway but I like to be careful. *Not sure if this story would be released anytime soon but it is something I want to pursue at some point.

    Thanks Mary Grace, Yes he is doing extremely well! It's only been like a month and a half or 2 since the stroke itself. I told him how well I thought he was doing. I told him I never expected him to do as well as he has, and he smiled when I said this. Then he said "I can't believe I had a stroke!" I completely agree! My Cerebral Palsy is permeant but I gain more and more motor function as the years go by. I hope the same is true for him and Kathleen! I have found the reason and purpose behind having Cerebral Palsy. I hope my teacher may someday find out that his stroke happened for a reason and that he can use his unfortunate circumstance to shine his beautiful light on everyone around him. He already has shone his light on me. I hope Kathleen realizes she has this light in her too! I hope the blood work goes well!

    Christmas Update: Finally got a tree and decorated it!
    Last edited by funnylegs4; 12-18-2015 at 09:02 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  7. #25
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Smile Merry Christmas to All!

    MERRY CHRISTMAS!

    ((((((HUGS TO ALL)))))) ~

    The day draws nearer. Christmas is upon us.

    I hope that you're ready, because we aren't. It took Jim and me 2 days to unfurl our new fake Christmas tree. It has no lights or decorations yet. Jon's room is not fully decorated. There is clutter everywhere, unwrapped presents, and it doesn't bode well for us to pull it all together before Christmas, unless we really work at it.

    The Lab mislabeled Jon's sputum sample, so it was never analyzed. There you go ~ incompetency at its peak. They didn't process Jon's Dilantin and Depakote levels or his sputum sample. I have no recourse, so we just move forward with his clinical presentations.

    The second blood draw did result in the revelation that Jon needs his Dilantin dose lowered, so we've been doing that and waiting for Jon to perk up. It's slow going.

    His SATS dropped to 76 while he was sleeping yesterday, so we had to wake him up and suction him to get him back to the 90s. We give MOM and 24 hours later, he produces massive quantities, and then it stops, and we're back to square one.

    Every day (or other day), we have been giving Jon his Christmas presents, which are movies and concert DVD/Blu Ray. Tonight, he's enjoying the Musicares Bruce Springsteen concert. He is happy, and he is home. That is all we want for Christmas.

    Today, our lovely family friend visited to cut Jim's and my hair. Jim has to look good for his new DMV license. And we thought we'd catch her before she has parties and family gatherings, where she could pick up the virus du jour. It's always scary to be around anyone at this time of the year. We just never know. Someone can feel fine during the day, and that night, flu symptoms start. It's too late then for us.

    We are having our second night of rain, which is a major blessing for us, and what a gift!

    We count our blessings, and we give thanks for you and the blessing you are in our lives.

    Wishing for everyone ~ peace, love, health, and happiness ~
    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.

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  9. #26
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    Hi Everybody,
    I wanted to wish you all Merry Christmas and Happy Holidays! I hope your holiday and your new year is filled with good health, happiness and love! Thanks again for your help!

    Rose, sorry about the test. I am familiar with that experience of labs mis labeling. Ugh. The Christmas presents of his sound fun! Lucky him!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  10. #27
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Smile Joyeux Noel!

    MERRY CHRISTMAS

    ((((((Holiday Hugs to All)))))) ~

    Jon's room has lights on the walls around his room. Michael's tree has lights. Only one ornament in Jon's room so far, and two on Michael's tree.

    I managed to do some light housekeeping, and unclutter a little in Michael's room. I wrapped presents for our former neighbors (who are our family, and their son is our "adopted son," who helps us with heavy lifting here) all day and into the evening yesterday. Sitting in Jon's room, watching his videos and wrapping.

    Adopted son dropped by today, with a gift for Jon (his "bud") ~ two music Blu Rays ~ The Beatles #1, which is so cool and sure brought back many memories for me and Jim, and U2 @ the Rose Bowl (some years ago). He played Santa and took our presents for tomorrow's Christmas breakfast with the family.

    I chopped veggies today, and I'm ready to make our dinner, but Jim and I will eat separately. I'm making the second half of the Field Roast grain meatloaf, with Rustic tomato sauce, leeks, onions, celery and mushrooms. Mashed potatoes. Carrots and peas.

    Christmas dinner will be a basic replication of Thanksgiving Dinner, except we'll have Tofurky gravy and green beans almondine. Jim is making his famous Roast Potatoes!

    We're doing our best to create a festive and cheerful, joyful and fun atmosphere.

    UPDATE ON JON ~

    The reduced Dilantin dose is helping awaken Jon, too much so. He doesn't fall asleep until 4 or 4:30 a.m. and then he only sleeps for 6 hours. He is more alert during the day, which is great. But the insomnia is concerning. However, he's pretty ramped up about Christmas, and this flood of gifts he's receiving, and all of the visitors he's had this month. Now, he's surrounded by lights.

    This is a lot of stimulation for a fellow, who spends his life in bed, within his four walls, and his connection to the outside world is his TV. So, maybe once the holidays are over, he will settle down again.

    There is definitely an up side to this socialization for Jon. It is something that he needs and craves. And that he has been given this gift for Christmas, from those, who care for him and love him dearly, is certainly a blessing.

    Wishing everyone a beautiful, peaceful, loving, healthy, happy Christmas ~
    Love & Light,

    Rose, Jim, Jon
    & Angel Michael
    xo xo xo xo
    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.

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