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Thread: CN Central: November 2017 Updates

  1. #11
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Donna ~ What a fascinating conference with outstanding topics! It's reassuring to me to know that these conferences exist, and I pray that many good things come from them and are realized and implemented in the real world.

    Unfortunately, I can't find the three lines in the upper right corner. Here's a screenshot of what I see on my computer:

    Screen Shot 2017-11-13 at 5.41.24 PM.jpg

    I wish that I could have attended this conference. Thank you so much for sharing this with us, Donna.

    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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  3. #12
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    Jut wanted to add a few pictures. Kathleen playing football with a friend as her helper. Sorry for the double...
    Mary Grace

    WP_20170923_010.jpg

    [ATTACH=CONFIG]4848
    Attached Images Attached Images
    Last edited by mg12061; 11-14-2017 at 07:19 AM.

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    A couple more from Halloween... Our pumpkin carving and Kathleen's brother and cousin at our party. Patrick her brother is The Mad Hatter and cousin is Beetlejuice.
    Mary Grace


    Attachment 4850

    Attachment 4851Attachment 4852Attachment 4853

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  7. #14
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    Hi Rose, that's so weird that you had a different screen! Oh well, you have a flavour. One of the big questions asked was, does it make a difference to you to have a genetic diagnosis? I would love to know your opinion - would it have been easier for you if you had had a diagnosis for Michael and Jon? How to share this information with information is a big question too. Sharing difficult news with patients and families generally is such an important topic because I think most doctors are frightened to share when the news is bad and as a result, they come across as not compassionate. All these subjects interest me and I hope that by sharing experiences and thinking/talking, we can make it easier for families in the future. Sending you love and healing prayers for everyone in your family, my wise friend. xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Thanks for sharing!!!! These are wonderful!!!
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Quote Originally Posted by Donna Thomson View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Hi Rose, that's so weird that you had a different screen! Oh well, you have a flavour. One of the big questions asked was, does it make a difference to you to have a genetic diagnosis? I would love to know your opinion - would it have been easier for you if you had had a diagnosis for Michael and Jon? How to share this information with information is a big question too. Sharing difficult news with patients and families generally is such an important topic because I think most doctors are frightened to share when the news is bad and as a result, they come across as not compassionate. All these subjects interest me and I hope that by sharing experiences and thinking/talking, we can make it easier for families in the future. Sending you love and healing prayers for everyone in your family, my wise friend. xoxo Donna
    Hi Donna, in my experience I would rather be told a diagnosis even if it hurts.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  13. #17
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Mary Grace ~ I can't access the Halloween photos. It could be the Firefox browser, which was just updated. It's supposed to be better. It's not. I was able to view the other photos. Kathleen is so full of JOY!

    Donna ~ I composed a rather lengthy response (no surprise there!) to your questions about having a diagnosis, because it's complicated. I wasn't sure whether it was appropriate to post it here in the update thread.

    It was nearly 50 years ago, so options for diagnoses weren't as available as they are now. We were told it might be a recessive gene, and that engendered major guilt for me. Both of our families blamed the other family for the "bad genes." We were given false hope, and genetic testing revealed nothing time after time.

    Finally, I recognized that a diagnosis wouldn't change anything. It wouldn't change the services or medical care or educational opportunities they received. It wouldn't stop doctors from predicting their demise ("He probably won't live beyond the age of ... {fill in the blank}." It wouldn't change my love and devotion for my boys, nor my life long commitment to their care.

    I would have had to wage the same battles for them, and their health would have declined regardless of whether we had a label for their condition.

    None of the physicians through their early years were very adept at delivering bad news. Then there were doctors, like the one, when Jon was 13 and had a 6 hour seizure. He said, "Why don't you put him in an institution and get on with your life?"

    If every physician stopped to think about how s/he would feel if they were the one receiving the news, or if it was one of their relatives or friends, I think they might temper their delivery with more compassion. It's so easy to gently touch someone's hands, look into their eyes, and say, "I'm so very sorry. I wish that there was anything else other than this to tell you. And, I want to assure you that I am and will be here for you and your loved, along with all of our staff." Then deliver the bad news, whatever it is.

    The other aspect of delivering this news is also providing hope, even in dire circumstances. Not false hope, but hope that all that can be done will be done for our loved one.

    That's the shortened version!

    funnylegs4 ~ I agree with you. I'd rather know than not know.

    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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  15. #18
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    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((Hugs to All)))))) ~

    Mary Grace ~ I can't access the Halloween photos. It could be the Firefox browser, which was just updated. It's supposed to be better. It's not. I was able to view the other photos. Kathleen is so full of JOY!

    Donna ~ I composed a rather lengthy response (no surprise there!) to your questions about having a diagnosis, because it's complicated. I wasn't sure whether it was appropriate to post it here in the update thread.

    It was nearly 50 years ago, so options for diagnoses weren't as available as they are now. We were told it might be a recessive gene, and that engendered major guilt for me. Both of our families blamed the other family for the "bad genes." We were given false hope, and genetic testing revealed nothing time after time.

    Finally, I recognized that a diagnosis wouldn't change anything. It wouldn't change the services or medical care or educational opportunities they received. It wouldn't stop doctors from predicting their demise ("He probably won't live beyond the age of ... {fill in the blank}." It wouldn't change my love and devotion for my boys, nor my life long commitment to their care.

    I would have had to wage the same battles for them, and their health would have declined regardless of whether we had a label for their condition.

    None of the physicians through their early years were very adept at delivering bad news. Then there were doctors, like the one, when Jon was 13 and had a 6 hour seizure. He said, "Why don't you put him in an institution and get on with your life?"

    If every physician stopped to think about how s/he would feel if they were the one receiving the news, or if it was one of their relatives or friends, I think they might temper their delivery with more compassion. It's so easy to gently touch someone's hands, look into their eyes, and say, "I'm so very sorry. I wish that there was anything else other than this to tell you. And, I want to assure you that I am and will be here for you and your loved, along with all of our staff." Then deliver the bad news, whatever it is.

    The other aspect of delivering this news is also providing hope, even in dire circumstances. Not false hope, but hope that all that can be done will be done for our loved one.

    That's the shortened version!

    funnylegs4 ~ I agree with you. I'd rather know than not know.

    Love & Light,

    Rose
    Hi Rose, thanks! I agree the diagnosis in and of itself doesn't really change the need. However I think in some more current situations like when I receive services for work or school is partly determined by the diagnosis like the people providing the services know my needs are not the same as another person with a different disability. I agree with what you said about medical professionals but I also think in cases like Jon's they assume you and Jon are miserable etc because they assume that they themselves would be miserable in that situation because they have no personal experience with it. Like this one guy once assumed I was so desperate to walk without mobility aids that I would wear a clunky, ugly robotic type device that wasn't even all that usable because I couldn't take it outside due to it not being waterproof, because in this doctors eyes crutches were so awful because he had no personal experiences with crutches himself.

    So in other news I am planning a huge screening of my new film but in order to do so I have to get it online this month or I'm going to lose the opportunity, so please hope and pray that I have no further tech issues so I can finally release a film on schedule for once. Thanks!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  17. #19
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    Funnylegs and Rose, It's unbelievable how uncaring some Dr.s can be. the news we were given at Kathleen's birth almost made my husband pass out. All the awful things that would be in store for us and Kathleen from "mental retardation" (his words) to Leukemia! Not one positive word from the Dr. When the Dr. left the nurse sat down with us and apologized for him and gave us a much more positive glimpse into our future. Luckily we had a wonderful pediatrician with a very positive outlook. We've also met some very caring dr.s along our journey but we will never forget that first Dr. and his words.

    Funnylegs I hope you can get your video up in time!

    Mary Grace

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    V__8E53.jpg

    V__891F.jpg

    V__DF31.jpgV__DF31.jpg

    These are some pictures from Kathleen's appointment at Shriner's yesterday. It was a very long day but she was a real trooper! 3 hours in the motion lab and then xrays. plus the 1 1/2 hours each way traveling. She was pretty OK with most of it but hated the sticky lights they had to tape to her. She absolutely hates anything sticky on her skin. We will meet with the surgeon December 28th. there is a whole team that goes over the data from the gait analysis and xrays.

    Hope the pictures work. I'll try to redo the other ones that didn't work.
    Mary Grace

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