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Thread: CN Central: March 2017 Updates

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Smile CN Central: March 2017 Updates


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

    After a wet, windy Winter, Spring will soon be upon us. A time of renewal, growth, beginnings.

    I hope that everyone will stop by occasionally to share your world with us. I miss you, when you're gone for awhile (that means ALL of you!).

    Meanwhile, I wish you all a healthy, happy Spring ~

    Love & Light,

    Rose
    Mom to Jon, 47, (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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    Well my update is that casting http://cripvideoproductions.tumblr.c...e-casting-call is a pain in the butt, but getting there. More soon..thanks for the thread! I meant to start one myself.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    My Update: So casting my film is still a big challenge. I thought I had found 2 people who could do one of the lead speaking parts but then both had family and health emergencies come up so I am scrambling to find new people and the process is painfully slow. If anybody has ideas on how to fix this let me know? Then I had a run in with a woman who wanted to help but was disrespectful of my physical needs from my disability so I said "forget it". Then I have to meet with a crew member but we can't find a suitable space to do what we have to do. Why can't any of my films be easy?
    Anyway I met up with my teacher friend with the stroke for lunch. Unfortunately he's not doing very well at all. He's weak and had to cut back on his work more. And now he has another acutely painful health problem for which he requires surgery. Pray that he pulls through the surgery!
    Last edited by funnylegs4; 03-19-2017 at 10:58 AM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Rose thank you for starting a update thread!

    HAPPY SPRING!

    Funnylegs so sorry that there are so many challenges along the way for your film but I'm glad you push through and get it done! It's so important!
    I'm sorry your teacher frieend is having more health issues I will certainly keep him in my prayers. Keep us posted on his surgery and recovery.

    Kathleen had a wonderful 20th birthday! I can't even believe she's 20! Our journey has been full of ups and downs but the one thing I know is her smile gets me up and smiling every morning (even if it's 5:30 LOL). We have met so many wonderful caring people through her and have learned our most important life lessons. I try to find the good and the positive in every day now. Because there is a good and a positive in every day. I can honestly say even in our most difficult days it could always be worse and many people are worse off. Not a day goes by that I don't remind myself of this because we always always have hope and faith!
    On Saturday Kathleen went to WWE wrestling live with a large group fo frieends and family. Through her joy at this event they all had a fabulous time!!! She came home so wound up! I enjoyed an evening out with a dear friend, dinner and shopinng (well mostly talking and walking).
    Kathleen has been very healthy lately. Going to school and getting out and doing fun things. She goes bowling on Sundays.
    We started using a new glove for her left hand to get some functional movment. She really like using it at home and in therapy. We're hoping that it will create carryover movment when not using it.
    This is the saebo glove
    https://www.saebo.com/saeboglove/

    I will put some new picture up in a separate thread.
    I continue prayers for all my dear friends here at BT
    Mary Grace

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    Thumbs up

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

    funnylegs4 ~

    I'm so sorry that you are having problems with casting and crew. I don't think that film making is easy for any film maker. Even Spielberg probably has bad days, or days, when he doesn't get what he was hoping to get with a shot or a scene, or an actor being obnoxious or anxiety ridden or drunk ...???

    It's an occupational hazard. This is art. Remind yourself of that. Art is not easy.

    And your challenge is greater, because of your subject matter, and finding actors, with disabilities, to fill your roles. I wish that I had more advice for you, but I think I exhausted all of my suggestions in the February updates (or somewhere, we were discussing marketing ...). If you're in New York, you are in the land of actors. Try contacting agencies, to see if any actors are interested in pro bono work just to get something on their resume.

    I'm so very sorry that your friend is unwell and facing surgery. My prayers are with him for strength, healing, and relief from his pain. And with you, as you worry about him.

    Keep the faith, funnylegs 4. Stay strong.

    Mary Grace ~

    Wonderful news that Kathleen has been healthy! That's the best news of all! And the photos clearly show how much fun her birthday party was; such great memories. And a WWE event too! Wow! Kathleen sure has diverse interests!

    I'm so glad that you had a Girls Night Out. You need that, in fact, we all do. Sometimes, we just have to be us, not Mom, or Wife, or wearing all of our other hats. It's great to take off the hats and let your hair down. Good for you!

    Thanks for checking in!

    Looking forward to more updates from everyone ~ I miss you!



    Love & Light,

    Rose
    Mom to Jon, 47, (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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    Well, Tyler's still being Tyler. We are stopping the second drug prescribed by the psychiatrist. Tyler is still having daily AD episodes, sweating buckets, shrieking, coughing and choking on the thick mucus from his wet lungs, the seizures are getting more prolonged, he goes unconscious for hours at a time (which is a blessing), waking up at 3:00 am and staying awake for the rest of the night. It is getting exhausting. We are watching him slowly burn out. Very frustrating. We are done with the medical community using him like a science experiment with no oversight. We will simply continue doing what we have always done, and that is keep him as comfortable as possible, love him dearly, pray over him daily and wait.

    Jerry and I are doing our best to stay as healthy as possible. January 1st, we started the Engine 2 WFPB diet challenge and found that we love eating that way. I batch cook a couple of times a week and always have healthy, interesting food choices available in the fridge. I've lost 12 pounds and Jerry 10. Love to say we feel great, but still waiting on that. Do have more energy and feel proactive with our health. Course people think we are nuts cutting out all processed foods, meats, poultry, fish, eggs, dairy, sugar, salt and oil, but it is working for us. We fill up on healthy vegetables, legumes, greens, fruits, nuts, seeds, and whole grains. Lipid numbers are the best they have been in years. Doctors didn't offer me any ideas on how to avoid another heart attack, just kept saying it shouldn't have happened in the first place. Not a big help. Researched the solutions on my own and kept finding reference to WFPB as the answer. Only time will tell if they are right. One problem is, that we feed Tyler the same food as we eat and he lost 5 pounds. He can't afford it, so I added some lean meats, eggs, Greek yogurt and oils into his blend and he has finally gained it back. We walk a fine line here, but are striving to get it right.

    Forgot to say that Tyler hasn't had a UTI in about 2 months. For him, that is huge!
    Last edited by Tamie; 03-21-2017 at 08:20 AM.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    ((((((Tamie)))))) ~

    Great news that Tyler has been UTI-free for 2 months ~ prayers that it will continue to be so. But I am so very sorry that Tyler is still having AD episodes and seizures. I can only imagine how difficult this is for him and for you and Jerry.

    That's wonderful that you found a diet, which is helping you and Jerry. I think a plant based diet is the way to go for everyone. Meat is very hard to digest (especially red meat), and finding organic meat is a bit of a challenge I think. I haven't heard of the the WFPB diet. I'll have to look it up. However, Jim and I have a problem with maintaining our weight, particularly Jim now. So we have to have high protein and calories.

    Please know that our prayers are with you daily.

    Love & Light,

    Rose
    Mom to Jon, 47, (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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