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Thread: Cerebral Palsy is COVID19 risk

  1. #11
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    I watched the video of the interview with Leilani's mother and stepfather. I am sobbing as I write this reply. My heart is breaking for them.

    https://www.cnn.com/world/live-news/...m_source=twCNN

    Lellani is a hero, who devoted herself to helping Seniors at the grocery store. Her last paycheck was $20.

    The store failed to provide her or her coworkers with protection from COVID-19, including masks and gloves. There is simply no excuse for this, because every grocery chain is worth tons of money, and they are responsible for the safety of their workers. OSHA comes to mind here.

    For their carelessness, this beautiful, loving young woman is gone, leaving her family and her beloved dog to grieve for her.

    I fear for all people, who work in a dangerous environment now. And yes, grocery stores and the Big Stores are dangerous for employees. Every single employee should be provided with proper protection, and health care to cover the costs of infection and sick leave.

    Leilani's passing is a true tragedy. As she was suffering, her coworkers finally got masks. But, she had to sacrifice her life for that to happen.

    God Bless Leilani's loved ones and grant them peace and comfort.

    Love & Light,



    Rose
    Yes Rose, I'm crying and also fuming! Nobody should be working without gloves and masks now. Especially someone who is disabled and around other high risk populations. I was informed by my teacher friend with the stroke that because she had a neurologic condition she should have had the right to take medical paid leave and my friend T was able to get medical paid leave due to the fact that she has Cerebral Palsy and is high risk. T also works in a store normally. It also appears she was underpaid to begin with but I could be wrong. Someone above her in power at her work did not see her life as worth protecting. Disgusting! What a horrible, TERRIFYING way for her to die. It makes me so nervous for my 1 other friend who works at a grocery and actually looks like Leilani.
    RIP Leilani. I will remember you.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  2. #12
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    Funnylegs, Just getting back to this forum sorry I didn't answer sooner. Kathleen is good. She's no longer in school (although we never stop doing school work at home LOL she loves workbooks). She was doing community habilitation but that has ended. I haven't taken her out in public for at least 3 weeks. She's very vulnerable given her strokes, autoimmune diseases and Down syndrome. It's really scary stuff. I think the saddest thing is I've seen young people with Down syndrome hospitalized with this and they don't allow any family with them. I just can't imagine that!! They would probably have to arrest me in order to separate me from her. She misses her brother so we facetime him. NY state is up to over 149,000 cases! Staying put for now and trying to stay positive active and hopeful. Stay well dear friend!
    Mary Grace

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  4. #13
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    Quote Originally Posted by mg12061 View Post
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    Funnylegs, Just getting back to this forum sorry I didn't answer sooner. Kathleen is good. She's no longer in school (although we never stop doing school work at home LOL she loves workbooks). She was doing community habilitation but that has ended. I haven't taken her out in public for at least 3 weeks. She's very vulnerable given her strokes, autoimmune diseases and Down syndrome. It's really scary stuff. I think the saddest thing is I've seen young people with Down syndrome hospitalized with this and they don't allow any family with them. I just can't imagine that!! They would probably have to arrest me in order to separate me from her. She misses her brother so we facetime him. NY state is up to over 149,000 cases! Staying put for now and trying to stay positive active and hopeful. Stay well dear friend!
    Mary Grace
    Hi Mary Grace,

    I’m so glad Kathleen is doing well and loves her workbook! She sounds like me with academics! :) Yes the idea of any child, especially a child with a disability being separated from their parents is terrifying to me because children can’t advocate for themselves or fully understand what is happening to them. I imagine being forcibly separated from parents would cause a lot of emotional trauma for any child. For disabled children there is also the danger of the doctors doing ableist rationing of care without the parents knowing My relative wanted you to know that they just found out that there’s evidence that COVID19 itself causes blood clotting and a lot of people are dying of secondary strokes caused by virus induced clotting. https://www.medpagetoday.com/infecti.../covid19/85577 Since Kathleen has Moyamoya I would think this would be of particular risk to her. Since Cerebral Palsy is kinda like a stroke and some people with CP have heart problems this could explain why the other woman I mentioned, Leilani died of heart issues related to the virus but that’s only a guess on my part. NYC is a mess. No worries I'm fine.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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    funnylegs, I hope you had a nice holiday! Ours was very quiet. Kathleen didn't quite understand why we weren't with other family members. But in spite of that she did ok. We played lots of Uno, she enjoyed having candy for breakfast LOL.We watched Harry Potter. Best of all she facetimed her brother.
    I knew there were many reason for Kathleen to be at risk including the past strokes she had and moyamoya. Having moyamoya puts a person at a higher risk for more strokes because of the very tiny "moyamoya vessels" that occur because of the lack of blood flow from the corrated arteries.. They become clotted easily that's why she takes aspirin. I hadn't heard about the clotting complication. Thanks for the heads up. I'll look into it a bit. NYC is such a mess I'm so sad for all the deaths and so many new cases every single day. A good friends daughter works as a PA in the city so I do keep her in my daily prayers. Stay well and safe.
    Mary Grace

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    Quote Originally Posted by mg12061 View Post
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    funnylegs, I hope you had a nice holiday! Ours was very quiet. Kathleen didn't quite understand why we weren't with other family members. But in spite of that she did ok. We played lots of Uno, she enjoyed having candy for breakfast LOL.We watched Harry Potter. Best of all she facetimed her brother.
    I knew there were many reason for Kathleen to be at risk including the past strokes she had and moyamoya. Having moyamoya puts a person at a higher risk for more strokes because of the very tiny "moyamoya vessels" that occur because of the lack of blood flow from the corrated arteries.. They become clotted easily that's why she takes aspirin. I hadn't heard about the clotting complication. Thanks for the heads up. I'll look into it a bit. NYC is such a mess I'm so sad for all the deaths and so many new cases every single day. A good friends daughter works as a PA in the city so I do keep her in my daily prayers. Stay well and safe.
    Mary Grace
    Thanks Mary Grace! I'm so so sorry for my delayed reply. I had no internet for a week because my cable company had problems caused by the virus. I'm so glad Kathleen is doing well! That is a relief to hear. I'm heartbroken for NYC too. Here's another story on the clot risk with COVID19 in case it helps https://www.cnn.com/2020/04/22/healt...HpLQljEyA9FfiU One of my friends D's father just had a stroke, so can you please pray for him? They don't know how bad his stroke is yet. Thanks! Stay well!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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    More info on Cerebral Palsy and other IDD/DD people being high risk for COVID19 https://www.disabilityscoop.com/2020...ovid-19/28434/ From the article in quotes:

    A new study is offering some of the first details about how the coronavirus is impacting people with developmental disabilities and the picture is not pretty.

    Individuals in this population are significantly more likely than others to die if they contract COVID-19, according to findings published in the Disability and Health Journal in late May.

    The study looked at electronic medical records for 30,282 people with the virus, including 474 with developmental disabilities like intellectual disability, cerebral palsy and Down syndrome.

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    Among those ages 18 to 74 with COVID-19, researchers found that the fatality rate was 4.5 percent for people with intellectual and developmental disabilities compared to 2.7 percent for others. The rate of death was also higher among individuals with developmental disabilities ages 17 and under, while the fatality rate was similar for those ages 75 and older whether or not they had a disability.

    “Based upon the case fatality rates we report among those ages 18-74, if 100,000 individuals with IDD contract COVID-19 — which is entirely possible in light of the estimates of the size of this population and the cumulative incidence rates we are seeing in our research — we would expect 4,500 to die,” said Scott Landes, an associate professor of sociology at Syracuse University who worked on the study. “Comparatively, among 100,000 individuals without IDD, we would expect 2,700 to die. That would be an excess of 1,800 IDD deaths and in my mind that is unacceptable.”

    It’s not entirely clear from the data why individuals with developmental disabilities experience a higher risk of death from the virus, though the findings indicate that this group did have more co-occurring conditions including hypertension, heart disease, respiratory disease and diabetes. The researchers also noted that people with developmental disabilities are more likely to live in congregate settings where it’s harder to limit the spread of COVID-19.

    “More attention is needed to this vulnerable health population in order to ensure their safety and well-being during this pandemic, including careful attention to the impact of public policies such as PPE prioritization and funding streams on the ability of residential service providers to guarantee quality care during this time,” Landes said.
    The virus is still out there regardless of any protests.

    Btw Mary Grace, Update: my friend D's father survived a bad stroke on the left side of his brain that effected his memory and physical movement. For now they don't think he had COVID19 but others around him did so there's always the slight possibility he had the virus.
    Last edited by funnylegs4; 06-08-2020 at 08:00 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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    More information on the risks for COVID19 and Cerebral Palsy from a mother of a teenager with Intellectual Disability and Cerebral Palsy here https://www.lovethatmax.com/2020/06/...palsy-and.html
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  10. #18
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    This is more about Intellectual Disability but since these issues overlap with Cerebral Palsy I'm posting here in case it helps https://www.npr.org/2020/06/09/87240...ctual-disabili
    https://twitter.com/Imani_Barbarin/s...70727056101376
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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    ((((((funnylegs4)))))) ~

    Thank you for sharing these articles. It's depressing, and it isn't surprising.

    Unfortunately, a large majority of persons with Intellectual Disabilities, or Developmental Disabilities, live in communal settings, like a group home, an intermediate or an acute care facility, or an institution. This is particularly true for individuals, who are adults, whose parents either couldn't manage their care or are deceased.

    Generally, the level of support for parents or relatives of these individuals is minimal. Fortunately, in California, we have two programs, which provide appropriate financial support for in-home care. If the Olmstead Act was implemented across the country equally, there would be far less out of home placement. That would reduce the cases of COVID-19 among this demographic.

    I suspect that any contagious disease, such as "the flu," MRSA, strep, etc., spreads rapidly in these communal settings. It's unavoidable, when living in close quarters.

    One of my comforts now is that Jonathan, Michael, and Jim are not here to worry about exposure to COVID-19. When Jim went to the hospital for a blood transfusion and then paracentesis in January and February, COVID-19 was here, but we didn't know about it. Regardless, we always wore masks and washed our hands in any medical setting.

    I pray for all of the people living in a communal setting that COVID-19 doesn't invade their residences. All it takes is one person with the virus to infect everyone.

    And, I pray for our BrainTalk family to be safe, because everyone here is at risk.

    Be well. Be safe. Take super good care of yourself.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  13. #20
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((funnylegs4)))))) ~

    Thank you for sharing these articles. It's depressing, and it isn't surprising.

    Unfortunately, a large majority of persons with Intellectual Disabilities, or Developmental Disabilities, live in communal settings, like a group home, an intermediate or an acute care facility, or an institution. This is particularly true for individuals, who are adults, whose parents either couldn't manage their care or are deceased.

    Generally, the level of support for parents or relatives of these individuals is minimal. Fortunately, in California, we have two programs, which provide appropriate financial support for in-home care. If the Olmstead Act was implemented across the country equally, there would be far less out of home placement. That would reduce the cases of COVID-19 among this demographic.

    I suspect that any contagious disease, such as "the flu," MRSA, strep, etc., spreads rapidly in these communal settings. It's unavoidable, when living in close quarters.

    One of my comforts now is that Jonathan, Michael, and Jim are not here to worry about exposure to COVID-19. When Jim went to the hospital for a blood transfusion and then paracentesis in January and February, COVID-19 was here, but we didn't know about it. Regardless, we always wore masks and washed our hands in any medical setting.

    I pray for all of the people living in a communal setting that COVID-19 doesn't invade their residences. All it takes is one person with the virus to infect everyone.

    And, I pray for our BrainTalk family to be safe, because everyone here is at risk.

    Be well. Be safe. Take super good care of yourself.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Thanks so much Rose! Completely agree! I actually just learned about the Olmstead Act the other day believe it or not LOL. Like the ADA the Olmstead Act must be enforced/implemented properly. I'm so glad your boys and Jim never ended up in an institution.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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