ADHD, ASC & LD hosts periodic meetings for teachers and parents online to discuss neurodiversity and any problems you are having.
ADHD, ASC, & LD Europe’s Social Media for Parents and Teachers, about Family Life and Education for Neurodiverse Children and Young People - autism, ADHD, Dyslexia, Dysgraphia, Dyscalculia and Dyspraxia, and coexisting conditions
Social Media - linktr.ee/ADHD_ASC_and_LD_Belgium
Wednesday June 8, 1:00 PM EDT (07:00 PM Brussels time)
Join Zoom Meeting
Meeting ID: 829 7095 4687
Tuesday June 21, 1:00PM EDT (07:00 PM Brussels time)
Join Zoom Meeting
Meeting ID: 850 4627 3028
Social Media for Neurodivergent Adults and their Work / Life balance:
#support #neurodiverseadults #navigatingneurodivergence #network #zoom #nd
From time to time teachers and parents meet to discuss neurodiversity and any problems you are having.
Social Media for Parents and Teachers, about Family Life and Education for Neurodiverse Children and Young People - autism, ADHD, Dyslexia, Dysgraphia, Dyscalculia and Dyspraxia, and coexisting conditions.
Social Media - linktr.ee/ADHD_ASC_and_LD_Belgium
#resources #support #assistance #navigatingneurodivergence #parents #teachers #neurodiversity #nd
Hello and thanks for your time,
My name is Peter and I suffer from a rare form of axonal neuropathy – severe. How I understand this process to operate is like this.
When a cell in the nerve is damaged the body produces Bundles and Strings that the body sends to the damaged cells with the job of repairing the axon within the cells in every nerve.
That’s why when you get a paper cut it hurts for a second, but that pain fades as the body repairs the damaged cells.
Some of my nerves have that feeling of pain, all the time. That moment when the papercut hurts the most, is how my nerves feel all the time. This will never get better, only worse. Sleep is elusive.
I could describe to you how this feels, but you’re a doctor and understand this better than I.
The disease eventually involves sensory, motor and autonomic nerves, and it is fatal, so I take this very seriously. Unfortunately, most doctors and support staff have been very rude and unprofessional and vindictive to me. The doctors actually lie to me and make statements that make clear they don’t take my healthcare as seriously as I do.
But I get it. This state has some issues right now and science is not very popular and overlooked when livelihoods are threatened.
This does not change anything for me. My condition does not respond to wishful thinking like acupuncture and other “natural” remedies. There is only one treatment for my condition, but that treatment is not very popular here in Oregon.
I cannot seek treatment out of state because I live in Oregon and no other doctor wants Oregon to look into their operations. Now I’m stuck trying to seek treatment for an unbelievably painful condition in the state that is last in the nation for chronic pain. This state still tries these controversial adjustments to the care of legacy pain patients.
Like that time in 2017 when the state of Oregon was planning to take all Medicaid / Medicare patients down to 0mg of opiate medication no matter what!
The rest of the country was shocked and Oregon was forced to back off, but just go to any OMB meeting and comment phase in the capital and you’ll see that this hope is still alive and well. These actions are confusing when compared to the steps other states have taken to accommodate induvial treatments, without the interference of unqualified personal like addiction councilors and pharmacy techs.
This year Oregon is choosing a new Governor and I usually vote blue no matter who, but this election I’m using the issue of a return to Doctor – Patient privacy to gauge my vote. The first person to even admit that this needs to happen will get it!
However the same organization that started all of this is now revising the guidelines to hopefully include guaranteed treatment for patients that have the medical evidence to support the condition.
At least that’s the hope for the CDC revisions and that’s if Oregon will even listen to these updated guidelines.
Until then, I still live in Oregon and I have substantive medical evidence to support the feeling of intense and never-ending pain in my feet and hands.
I do have a PCP that provides some medication, but refuses to take time and tolerance in consideration and help me in adjusting the doses. All sorts of people look at the levels of my current medication and not how long I’ve been taking the same dose. Then they act as if tolerance is not a thing in medical science!
It’s as if the entire medical community in the State of Oregon suddenly developed a form of Dyscalculia or dysarithmia. This is a disability resulting in difficulty learning or comprehending arithmetic, such as difficulty in understanding numbers, learning how to manipulate numbers, performing mathematical calculations and learning facts in mathematics.
I have hoped that I will find a doctor or Pain Management Clinic that is brave enough to use science to stand up to the state and do what doctors are expected to do. Instead, I am berated for bringing up my lack of treatment and if I start to describe my symptoms when doctors go into a very well-practiced routine that is very, very belittling to the patient.
Like any thinking person, I’ve tried to appeal to their better nature through the cunning use of medical evidence. Evidence I was forced to endure in order to prove to the state that I’m not faking this horrible condition.
I know that it’s easy for doctors to dismiss me and my condition. Especially if the person making this decision has limited, or absolutely no, medical training and experience. Like for example an addiction counselor or pharmacy tech.
After my doctor was forced to retire I’ve been “parked” at a medical clinic with a set of doctors who refuse to even discuss a small increase in dosage and instead inform me that the only doctors who will help are associated with a Pain Management clinic.
In the past 4years I have visited over 45 individual doctors and absolutely none of them will help me. ( I do have a large spreadsheet with names and dates to support this claim)
I continue to contact doctors’ offices and endure the vicious slings and arrows of people who just want me to go away. I want to go away, but the pain forces me to go to strangers time and time again only to be treated in a very unprofessional manor.
I have a very informative E.M.G. that lasted almost 2 hours and the results of a full biopsy on my main left nerve; a procedure that was performed at O.H.S.U. where I was released without any post-op care. I spent the following days suffering without any relief on a very painful nerve surgery.
This is how far off the rails Oregon has gone! Its one size fits all policy has been proven to be detrimental and not in the penitents best interest. That’s insane!
In the state of Oregon when you have something egregious like this happen, patients are encouraged to fill out a complaint with the Oregon Medical Board. A state department that was fractured and split into three separate boards, one for doctors, one for nurses, and one for Clinics.
As you may have guessed this only serves the state in deflecting blame and the members of these boards continually work at making this process more difficult to manage every year.
All of this just makes patients needlessly suffer as I desperately try to find someone to help me. Instead I still have to continue to make the most coherent argument I can, only to have the prospective doctor make outrageous claims and get angry at any form of push back.
When your body needs this medication the patient no longer feels euphoria and over time the effeteness and benefits of these medications wane, but for the patient in the chronic pain they are still very powerful.
That’s how kids die taking this medication, they chase the euphoric feeling I no longer feel.
When you need it, you don’t really feel it.
Opiate medication is proven effective and safe when an adult and their doctor work together.
That’s the differences between normal people taking opiate medication and people like me taking these medications is, I can take this medicine for the rest of my life without betting “addicted” because my body needs this medication to function and live, while yours does not!
Healthy people will still get the euphoria while I would use this to gain the ability to walk, anywhere!
Thank you for your time and I encourage everyone to take an interest in this issue before you yourself need this medication, only to be forced into the hell of being denied.
Someone once said, “Hell is the inability of reason”
I’m just searching for some reasonable people.