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Thread: Cerebral Palsy is COVID19 risk

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    Exclamation Cerebral Palsy is COVID19 risk

    Cerebral Palsy listed as CDC risk for Coronavirus https://www.mercurynews.com/2020/03/...3157BHYphr5AaI

    Yikes!
    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 don't usually come to this thread but just happened to catch the label of it and figured I'd check it out. Thanks for the list. I knew Kathleen was at a high risk but not all the things that put her there. She checks off at least 3 on that list. Stay healthy and safe!
    Mary Grace

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

    Thanks for sharing this article.

    I wonder whether Cerebral Palsy is listed, based upon a generalization that people with CP have other health issues and may be medically fragile. You are pretty healthy overall, aren't you? You don't have respiratory problems or an autoimmune disorder, do you?

    The labels "intellectual disability" and "delayed developmental disability" are catch-all terms to lump together individuals with a wide variety of disabling conditions and functional abilities. CP, an actual condition, has been turned into a label and used generically.

    Are you self-isolating and social distancing? Have your classes been canceled? As much as it is possible, it is wise for all of us to stay home and avoid situations, which might expose us to the virus.

    Prayers for all of us to avoid COVID-19, and for the bell curve to begin dropping soon.

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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    Quote Originally Posted by mg12061 View Post
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    funnylegs, I don't usually come to this thread but just happened to catch the label of it and figured I'd check it out. Thanks for the list. I knew Kathleen was at a high risk but not all the things that put her there. She checks off at least 3 on that list. Stay healthy and safe!
    Mary Grace
    Hi Mary Grace,
    Yes, stroke is one of the risks so I posted this same link on the stroke forum here. The virus is much more dangerous to my teacher friend with the stroke, as he is somewhat medically fragile! He has like 4 chronic illnesses that existed even before the stroke that are on that list. He texted me today saying. “I’m fine for now”. THANK GOD! All my prayers precious Kathleen stays safe and well! How is her school handling things? Can I help in any way???
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((funnylegs4))))))) ~

    Thanks for sharing this article.

    I wonder whether Cerebral Palsy is listed, based upon a generalization that people with CP have other health issues and may be medically fragile. You are pretty healthy overall, aren't you? You don't have respiratory problems or an autoimmune disorder, do you?

    The labels "intellectual disability" and "delayed developmental disability" are catch-all terms to lump together individuals with a wide variety of disabling conditions and functional abilities. CP, an actual condition, has been turned into a label and used generically.

    Are you self-isolating and social distancing? Have your classes been canceled? As much as it is possible, it is wise for all of us to stay home and avoid situations, which might expose us to the virus.

    Prayers for all of us to avoid COVID-19, and for the bell curve to begin dropping soon.

    Love & Light,



    Rose
    Hi Rose,

    I’m so sorry if this article scared you for my safety. I’m perfectly healthy aside from the CP itself. It is my understanding that folks with CP are not that super super high risk according to my drs, my dr said my body would respond to this virus like the flu and I’d get over it fine. I even asked if the hole in my heart is a risk factor and so far the answer is “no”. I was a bit more scared after my fainting incident but not even that is a problem. I already do immune boosters and had the flu shot months ago. So don't get totally spooked if you see CP warnings about the virus around. It depends on the type of CP and if other conditions exist with the CP I believe like you say….like if you have asthma, epilepsy, diabetes, or if you have the CP types that cause problems with speaking, drooling, and swallowing because trouble talking in CP can cause lung issues, like for my other CP friends. * Stroke survivors seem higher risk too..so I’m terrified for my teacher friend with the stroke! He’s much weaker so can die! Pray for him PLEASE? Yes! Absolutely I’m self isolating! I started staying inside even before things like Colleges closed because I didn't want to expose my medically fragile friends by mistake, and don't worry, I will continue to stay inside!

    Yes all my work and school is moved to an online video format, and on one small level, it’s actually really fun because it’s like I’m in Cerebral Palsy accessibility heaven via internet. I would NOT wish the virus on anybody but if anything good comes out of this mess I hope it’s that colleges and jobs use internet and telecommunication more for the essential parts of the said activity. It would help disabled people graduate college and stay employed if more things were done remotely.

    I stocked up on things weeks ago and I’m relieved I did because I’m seeing my careless neighbors start shopping just today! What the heck people…???

    Would you like me to post periodically about how I am? I have a lot of time on my hands now so I will be happy to allay your worries that way. It gives me something to do to prevent being stir crazy in here. Let me know?? Thanks so much for your concern! Prayers to all from me as well! This too shall end.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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    In this article, they list several different medical issues, describing the medical how's and why's that make the risk greater. Then they get to "Neurological Disorders", list a handful, and omit all of those reasons. This immediately made me suspicious if they were indeed based on scientific facts. I started to try and find out if it was indeed based on science.

    While epilepsy is on that list as well, all of my medical sources tell me there is absolutely no increased risk for either catching the virus, or becoming an acute case if one does due to having epilepsy, having a seizure, or taking AEDs. In my opinion, they simply decided to say all people with any neurological disorders are at higher risk.

    https://www.epilepsysociety.org.uk/e...s#.XnPg-y3Mw1I

    Perhaps if you have a fever, a person with epilepsy may be at higher risk in having a febrile seizure. Though anyone could have a febrile seizure.

    I have yet to find any verified medical source of information confirming this "increased risk" to cerebral palsy patients. Except that they are also being grouped with all of the other Chronic Neurological Disorders said to be at higher risk.

    Beware of misinformation during this crisis.
    Don't freak out from everything you read in the news.
    When in doubt, seek medical advise.
    Firehorse

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

    funnylegs4 ~

    Of course, I'm concerned for you, as I am for everyone on BT. Based upon knowing you for several years (how many? A long time!), I know that you are essentially healthy and not medically fragile. As you mentioned, there are plenty of folks with CP, who have other problems, which could cause them to be more at risk. I think that holds true for the other neurological conditions listed in the article.

    I'm glad that you stocked up in advance and are self-isolating. I can understand why remote courses on line are better for you too. I do hope you will continue to check in with us regularly, so that we know that you are well.

    firehorse ~

    Both of my sons had epilepsy. Michael's was intractable for 22 years of solid seizing, and Jonathan's seizures were moderately controlled, but when he had a tonic clonic, he was hospitalized typically with pneumonia. Seizures caused them to be predisposed to pneumonia, and I've lost track of the many times they were hospitalized with it, usually on a ventilator.

    As I mentioned, this article seems to generalize about these neurological conditions, without acknowledging the individuality of people, who have these conditions. I don't think the article is spreading misinformation. Rather, it lacks specifics about why these conditions could be a risk factor with COVID-19.

    Prayers for all to be well and safe.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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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*)))))) ~

    funnylegs4 ~

    Of course, I'm concerned for you, as I am for everyone on BT. Based upon knowing you for several years (how many? A long time!), I know that you are essentially healthy and not medically fragile. As you mentioned, there are plenty of folks with CP, who have other problems, which could cause them to be more at risk. I think that holds true for the other neurological conditions listed in the article.

    I'm glad that you stocked up in advance and are self-isolating. I can understand why remote courses on line are better for you too. I do hope you will continue to check in with us regularly, so that we know that you are well.

    firehorse ~

    Both of my sons had epilepsy. Michael's was intractable for 22 years of solid seizing, and Jonathan's seizures were moderately controlled, but when he had a tonic clonic, he was hospitalized typically with pneumonia. Seizures caused them to be predisposed to pneumonia, and I've lost track of the many times they were hospitalized with it, usually on a ventilator.

    As I mentioned, this article seems to generalize about these neurological conditions, without acknowledging the individuality of people, who have these conditions. I don't think the article is spreading misinformation. Rather, it lacks specifics about why these conditions could be a risk factor with COVID-19.

    Prayers for all to be well and safe.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Hi Rose,

    Thanks so so much for your concern! I really appreciate it! I think I have been on this forum since 2009 but I’m not even sure anymore LOL. You are right. It depends on the Cerebral Palsy type. I talked with a nurse and her son who has Cerebral Palsy today, (she and her son immigrated from Ghana years ago, so fascinating!) and they both said the Cerebral Palsy risk is when the muscle changes caused by severe spasticity decreases the lung capacity of the person with CP increasing COVID19 complication risk and reminded me of this video about an actress learning to imitate the effects of severe CP https://www.youtube.com/watch?v=rL4oc1y2STs where the actress said the CP movements can restrict breathing deeply enough. My other friend with a severe neurologic muscle wasting condition said COVID19 could kill him because his lungs don’t expand properly either. So the article is NOT misinformation but is not as specific as it could be. I’m sorry it’s not more specific. No worries, I have normal lung capacity! Just ask the unfortunate souls who cause me to get pissed LOL. I scream LOL.

    I’m so sorry Jonathan had pneumonia when he was alive. I SO wish both your precious sons were still alive but I am glad that you will never have to worry about COVID19 for them.

    I continue to do well. I feel great. I’m talking to people I don’t usually get to talk to and I’m working on resolving some issues I had with someone who did something ableist to me by accident a few weeks ago, he wants to do better by me so I guess viruses are good for fixing friendships. Some nail salon shops are still open here which is so weird...what the...?

    BTW Thanks Firehorse!!! Appreciate the feedback!
    Last edited by funnylegs4; 03-19-2020 at 06:14 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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