The "Spoon Theory" aka
"You Don't Look Sick" https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
If you haven't read this, take the time. don't ask us to "push just a little harder."
The energy that we're saving in the moment is most likely needed for the nightly tasks the others take for granted like feeding the animals and similar activities or just actually getting in bed.
Fair amount of research on Long Covid recently. One piece is worrying in that it is now thought that LC might well be a brain injury. Those of us who`ve had Covid or even a severe flu can attest that there is a lot of brain fog and confusion that occurs.
The second piece is encouraging in that there is evidence that on-line rehabilitation programs can be quite effective in improving LC symptoms. Especially the exercise problems and the memory problems that have been reported.
The links are below: #longcovid #treatment #braininjury
New Evidence Suggests Long COVID Could Be a Brain Injury.
"SARS-CoV-2 isn't going anywhere. It will continue to infect the population, so if this is indeed a virus that damages the brain in the long term or permanently, we need to figure out what can be done to stop it," said Al-Aly.
#Covid news from the UK: “During the COVID-19 pandemic it became apparent that neurological complications were occurring in a significant proportion of hospitalised patients & even in those with mild COVID-19 infection. While some neurological ‘symptoms’ were often mild (headache & muscle aches [myalgia]), it became clear that more significant & potentially life-changing new neurological ‘complications’ were occurring, including encephalitis (brain inflammation), seizures, & stroke.
How & why #authors should investigate speaking at local Womens Institute groups.
I encourage fellow authors to explore speaking at local groups. They are a powerful platform not just for income, but for raising awareness and connecting with communities.
The role of Neuro Navigators in Brain Injury #Rehabilitation.
Learn how they help patients with #BrainInjury regain their lives.
I hadn’t heard of Neuro Navigators until a session at ABIL (Acquired Brain Injury Forum for London) in November 2023. These specialists are filling a large gap in #ABI care in London https://pigpen.page/neuro-navigators/
Ongoing brain injury caused by COVID-19 may not always be detected by routine tests.
"A new study details that markers of brain injury are present in the blood many months after COVID-19 infection, despite inflammation blood tests being normal."
Our very own @poconnor has written a new update to her newsletter!
All about the ESPKU including the best panel ever held*, and some details about brain injury. Not only that, but it closes on a final thought which-my word, I really needed that about now, so thank you Pauline!
You can read it here (and maybe subscribe, would you?)
Hello! @poconnor has released a new monthly newsletter, and in it there is a bit about batch cooking PKU food WHICH OF COURSE I'm going to study like my exam is tomorrow morning!!
If you have PKU or curious (also same about brain injury!), then check out the newsletter here:
⚠️ CW – Suicide Prevention Month (TBI and Suicide)⚠️
September is National suicide prevention month and many members of the Invisible Disability Community are at high risk but, they're not alone. Individuals in the LGBTQIA community are "four times more likely" to make such an attempt for much the same reason as disabled individuals. The way they are mistreated and stigmatized in society. It is also the second leading cause of death for young people in the US between the ages of 18 and 25. "Native American communities experience higher rates of suicide compared to all other racial and ethnic groups in the US being the eighth leading cause of death…".
I thought this would be a good time to migrate and repost a piece I did on TBI "traumatic brain injury" and suicide to include these other at risk groups. What can you do if someone in your life is at risk? Spend some time with them, don't be judgmental, listen and love. If you see them being victimized or bullied, stand up and say something.
TBI - Traumatic Brain Injury and Suicide (originally posted Dec 27, 2022)
Why support is so important for those that live with TBI and Brain Injury. Between 2014 to 2017, the traumatic brain injury-linked death rate rose from 16.3 to 17.5 per 100,000 people.
There were 61,131 TBI-linked deaths in 2017 alone, and nearly half of these deaths were by suicide or homicide from 2015 to 2017. Last summer, a rash of suicides on the USS Washington raised questions about lack of support and services said to contribute to these deaths.
The links below present the dismal statistics and some ways to help prevent suicide among the population living with Brain Injuries and other marginalized people.
⚠️ CW – Suicide Prevention Month (TBI and Suicide)⚠️
September is National suicide prevention month and many members of the Invisible Disability Community are at high risk but, they're not alone. Individuals in the LGBTQIA community are "four times more likely" to make such an attempt for much the same reason as disabled individuals. The way they are mistreated and stigmatized in society. It is also the second leading cause of death for young people in the US between the ages of 18 and 25. "Native American communities experience higher rates of suicide compared to all other racial and ethnic groups in the US being the eighth leading cause of death…".
I thought this would be a good time to migrate and repost a piece I did on TBI "traumatic brain injury" and suicide to include these other at risk groups. What can you do if someone in your life is at risk? Spend some time with them, don't be judgmental, listen and love. If you see them being victimized or bullied, stand up and say something.
TBI - Traumatic Brain Injury and Suicide (originally posted Dec 27, 2022)
Why support is so important for those that live with TBI and Brain Injury.
From 2014 to 2017, the traumatic brain injury-linked death rate rose from 16.3 to 17.5 per 100,000 people.
There were 61,131 TBI-linked deaths in 2017 alone, and nearly half of these deaths were by suicide or homicide from 2015 to 2017.
Last summer, a rash of suicides on the USS Washington raised questions about lack of support and services said to contribute to these deaths.
The links below present the dismal statistics and some ways to help prevent suicide among the population living with Brain Injuries and other marginalized people.
Hey all! @poconnor has released a new newsletter, and it features her happy little pupper as well as #PKU news, #BrainInjury news, and some new fancy #recipes to try!
Life with a #HiddenDisability is a constant contradiction. I pick up certain things with lightening speed (at my new job, for instance) and yet after a full day at work I can barely keep my eyes open.
"10 year Boy with Down Syndrome Assaulted by Bus Driver - Abuse of Students with Invisible Disabilities by Educators"
⚠️ CW - Stories on mistreatment and abuse of students with invisible disabilities in schools across the country. May be disturbing to some.
Yesterday, a bus driver for the Upper Darby school district in Pennsylvania, was charged with assault, unlawful restraint, false imprisonment, and endangering the welfare of a child.
Juliet Pratt was captured on surveillance cameras, duct taping the a student with Downs Syndrome around the ankles and chest to restrain him. The footage also show the child, who was already in a safety harness, caused no disturbance and remained in his seat. Regardless, nothing warrants this kind of abusive behavior to people with invisible disabilities, especially by someone involved in child education. The March 8th incident was not the only. The bus driver admitted doing this appalling act to the child, at least one other time. Pratt cut the tape restraints with a seat belt cutter to free the boy upon arrival at the school.
There seems to be no mention of charges related to disability protectections in news reports. Has she done this to others? Would she have done this if the child did not have a disability? If Ms. Pratt singled the child out for this treatment because of any disability related reason, (ie - thinking she could get away with it because of the boy's DS), authorities may want to consider this an ableist hate crime.
Unfortunately, this problem is not uncommon. In some places, the techniques used are legal, bringing harm to many students with invisible disabilities. In Virginia, a 10 year old autistic boy, had the "bones in his hand and foot crushed" by an educator. The injuries were caused by a staff member who was isolating and confining the child, in what was called the "scream room".
Many reports of similar abuses have surfaced in Connecticut schools as well. In one case, a second grader with ADHD was held down, and locked in confinement after a manifestation of symptoms. Aside from the mental and emotional wounds caused, just as in many other cases, the child suffered physically injury. According to the story linked below, students have been restrained and isolated "thousands of times causing dozens of injuries" in Connecticut schools. This hardly sounds like accommodation and community intergration.
Then, there's Xavier Hernandez, who died as a result if being held down and restained by multiple staff members at "Boulevard Heights" school for "students with disabilities" in Texas.
These are the people entrusted with the job of shaping young minds? What lesson does this type of behavior teach other students about interacting with people with invisible disabilities; that they should be restrained, isolated and subjected to physical and mental damage? Considering these, and many other such acts, it seems many educators could use a lesson on understanding and accommodation of persons with invisible disabilities.