Wednesday, January 1, 2020

Needed: Lines of Communication

Happy 2020 to you all.

Beginning a new decade, having been run ragged, through the ringer, proping up my elderly father who has spent many months in several hospitals these past two years...  

Saving him is of course worth the effort, but living out of a suitcase in another state, shlepping from one hotwire or priceline hotel deal to the next, shuffling back and forth on the weekends from Tulsa to mom's house in McAlester, away from my own home in Georgia for months on end is extremely draining, expensive, and overwhelmingly emotional.  On top of all the other endeavors this family is pursuing in the betterment of mental health care, treatment options and legal remedies.  Daunting to say the least.  I'm beat.  Thus has been the delay in my blogging, lately.

I am delighted, though, to see my previous blogs have been getting hits and still being read.  I'm sorry I literally have had no time to write.  

The "fight" has been priority one:  Real and unrelenting.  

Yet, as I say, the "proof is in the pudding" because as always, after I stand my ground and micro-manage dad's life, he always gets better.  In 2018 he nearly died, and would've been locked in a psychiatric nursing home (several times over the years) had I not advocated fiercely for his proper recovery.  In 2019, after he did so very well, I left Oklahoma and sadly, he proved that his nutrition choices led him right back into the hospital.  What we learned is that he isn't understanding what we know from experience.  His profound sugar cravings lead directly to his demise.  

This is a very simplified version of what happened:

Summer 2019 he was living independently, and he admits to consuming four two-liters of Mountain Dew every day, and eating only peanut butter, candy, ice-cream, and McDonald's dollar menu items.  Sadly, his brain became inflammed and manic.  He NEVER slept, except for dozing off in his car on the side of the road or at several gas stations or sleeping in fast-food parking lots and EMSA asking him to move.  Then I would get calls from either EMSA, the Tulsa Fire Department, the Tulsa Sheriff's department, or Tulsa Police and I would request they take him to the nearest ER.  Sometimes they would, sometimes they wouldn't.  He was suffering terribly.  Was taken twice to the ER, and sure enough, he had yet another UTI (dehydration because he wasn't drinking the water with flavorings I taught him to use. I thought he understood from last year's sepsis was the number one issue, but it didn't sink in apparently.)

 This is a billboard on the eastbound Skelly Bypass in Tulsa:

The above photo is a typical soda vending machine.  
This particular one located at the Ernest Childer's VA outpatient clinic at 41st & Mingo in Tulsa.

Not everyone is affected badly like my dad (and brother) are by Mountain Dew,
but the following links prove there is an ingredient that should be banned.  
Our legal nonprofit will have to put this on the (long) list of items to deal with.


It seems dad's glucose or insulin receptors do not work properly.  I've told his doctors, but they either don't know how to test for this, or they simply say they aren't allowed to prohibit dad from eating only sugar all day, every day.  He's Type II diabetic.  His "episodic mania" as one psychiatrist called it, is 100% consistently linked to this behavior, (same as in previous years) yet none of these doctors were taught about this in medical school, so they don't believe what I tell them.  So, I printed and handed out, or email this and other articles, in an attempt to give credence to the patterns in dad's health.  I gave various articles to every doctor that treated dad this year, such as:

(From this Psychology Today article):


"...emerging evidence suggests that something else might be behind schizophrenia. Attention has turned to bioenergetics, or energy production in the brain cells. It is well known that people with schizophrenia are three times more likely to develop diabetes A common debate in the field is whether the antipsychotic medications, which are known to cause weight 
gain and diabetes, are to blame. Recent research suggests that this is not the entire explanation. 
Even people newly diagnosed with schizophrenia appear to already have insulin resistance
, even though most don’t yet have diabetes. This means that their brains may not be getting enough energy from glucose. Other brain studies have found metabolic abnormalities, such as higher levels of oxidative stress and inflammation as well."


"This diet is known to produce ketones which are used as a fuel source in place of glucose. This may help to provide fuel to insulin resistant brain cells. This diet is also known to affect a number of neurotransmitters and ion channels in the brain, improve metabolism, and decrease inflammation. So there is existing science to support why this diet might help schizophrenia."

Let this information sink in. Herein lies some of the reasons mental illness statistics are rising. And some of the main items WJWMHLF (upcoming nonprofit) will be addressing. 
These are vital issues that demand attention. My hope is that the public and medical establishment will start understanding and addressing these causal issues, instead of treating symptoms with neuroleptic medications that are not cures.

Quote from the New England Journal of Medicine:
“...psychiatric diagnoses and medications proliferate under the banner of scientific medicine, though there is no comprehensive biologic understanding of either the causes or the treatments of psychiatric disorders."

Also, FYI:  To our horror, my elderly father has been "restrained and sedated" many times in this past year, against the lawful Treatment Advocate instructions, no less.

In our Oklahoma experience, this practice of restrain and sedate is standard even with elderly disabled in all kinds of hospitals and EMSA. Sadly, the joking "memes" I've seen on Facebook and Pinterest about the numbers of combo medications that can be used in one syringe are disgusting.  I understand when the patient is dangerous, but an 83 year old man that can't walk isn't dangerous.  And the "laughing" attitude on social media about this makes my stomach turn and needs to stop.  It lacks care, compassion and proper medical ethics, and needs an adjustment across the board.
Read and learn the following new BEST PRACTICES.  We have to be humane and stop the harm. 
"The problem is not simply one of scientific and intellectual integrity. This state of affairs influences training and reimbursement and does a great disservice to patients, practicing psychiatrists, and our medical colleagues who are striving to provide the best and most humane care to people with medically and psychologically complicated conditions.”  ...“restrain and sedate,” has been a standard of practice for many years. The approach has staunch advocates, who insist that it is the best means of maintaining safety for the staff and others in the area. But this stance can fail to recognize that at the center of this raucous activity is a human being— one who is commonly very scared, vulnerable, and fragile — and that the acts of forcible restraint and involuntary medication can often cause more harm than good. Further, quite often, takedowns, restraints, and injections can be easily avoided, in a way that is safer and faster —while improving both short- and long-term outcomes.”

My brother has been restrained and sedated more times than we can count in his 31 year odyssey in the failing mental health system.  His trauma from these experiences is exponential.


So, about all I can muster to celebrate in this new year is the fact that there is much potential for things to start looking up.  I remain always, though it's against all odds and very difficult.  And we try to rest as best we can, on this January 1st.  I just got home last night, and have been under the weather for over two weeks...
...probably due to stress.
But we will keep on, keepin' on.  Because we know our family better than the doctors, and we have legal right to communicate.  If they don't listen, it only causes problems.  Hopefully that glass ceiling will be broken as time progresses.   It's wisest to listen and remain humble, when a life is in the balance.  No room for arrogance in patient care, but after reading hospital record chart notes, arrogance and misrepresentations abound.  So many unnecessary problems when there is no line of communication.  And their fear should never override proper care for the patient.
Too much to say, in too little time.  
So... until next time, adieu.

Please share any of the articles to your own medical professionals and mental health advocate entities.  These items cannot be mainstreamed fast enough.


Jackie Welton DiPillo

Tuesday, July 30, 2019

What We Are Facing: The Runaround

The following:

One page of MANY
as we prepare to file the finalized documents for upcoming 501(c)3

WJW Mental Health Legal Fund

One two-month true example 
in the mountain of a thirty (30) year timeline of 
that created the NEED for the nonprofit
to help ease the burden on the mental health system.

To procure 
Legal Representation 
for indigent, disabled, criminalized
Diagnosed with Serious Mental Illness (SMI)
~ The forgotten ones ~

Much more to come, soon.


GTCA - Mental Disability Case, Lawyer Search
All Doors Lead Nowhere.  
Money is the bottom line.

A.   Item No. 104 - 05/19/17:  Oklahoma Bar Association
·      OBA said there is no lawyer category for:         
o  Mental Health Law
o  Mental Disability Lawyers
OBA suggestions:     Oklahoma Find A Lawyer  (See B, below) 
                                            Call Tulsa County District Attorney  (See F, below) 

B.    Item No. 105 - 05/19/17:  Oklahoma Find A Lawyer
·      This entity also said there is no lawyer category for: 
o  Mental Health Law
o  Mental Disability Lawyers
DEAD END for private, pro-bono attorney leads for indigent, criminalized SMI  

 Exhausted all Oklahoma GTCA mental health Civil Rights 
pro-bono lawyer suggestions  
2017 Private Attorney “Lawyer Search” (very long list)

New Search Focus:  Pro-bono Law Agencies
Mental Disability Legal Representation

C.   Item No. 107 - 05/22/17:  Center for Public Representation (Massachusetts)
Suggestion:  Call the National Disability Rights Network (See: G, below)  
                        (Washington DC)

D.   Item No. 109 - 05/25/17:  Bazelon Center for Mental Disability Law (Washington DC)
·      Bazelon spoke to Oklahoma Disability Law Center:  Neither can help 
        (See: E, below)
·      Bazelon offered to consult, but would need an Oklahoma attorney to file.       
       There are none.
Bazelon suggestion:  Call Legal Aid Services of Oklahoma  (See H, below; 1st) 
for resources available to people filing “pro se” on behalf of oneself  
(The only option)

E.     Item No. 112 - 06/28/17:  Oklahoma Disability Law Center, Inc.
·     Declined to take this GTCA mental disability case due to: 
A disproportionate amount of resources required for one case  #TheReasons $$  

F.    Item No. 114 – 07/10/17:  Tulsa County District Attorney – Steve Kunzweiler
DA Office suggestion:  Call Legal Aid Services of Oklahoma  (See H, below; 2nd) 

G.   Item No. 115 - 07/10/17:  National Disability Rights Network
Suggestions:  Call Legal Aid Services of Oklahoma  (See H, below; 3rd)
 Call Oklahoma Bar Association  <<<<<<<<<< !!!
 (We’ve come full circle - back to square one)

H.   Item No. 116 – 07/12/17:  Legal Aid Services of Oklahoma, Inc.
·      Legal Aid said they do not handle this kind of civil case
Legal Aid’s only suggestion for WJWMHLF Founders:
·     Contact the Legal Aid funders to further inquire as to the reason they do not represent this type of mental health civil case (i.e., Pro-bono GTCA for indigent, criminalized SMI)

o   Funder:  Legal Services Corporation, Washington DC

                  Uhhh......will do.

"The Runaround" 
because these calls lead to either 
or to 
"call some other entity"
and then
that entity circles back 
with the same suggestions!


I hope this insanity bothers you 
as much as it does me.

Stay tuned.  We've been busy...  😉

Jackie Welton DiPillo

As Dad always says, 
"Necessity Breeds Invention"

Friday, June 7, 2019

Hypothetical Poll: Mind or Body?

Serious question. 
If you had to choose to have a healthy mind or a healthy body, 
which would you choose? 

Only one or the other.  

Mind or body?   Keep it simple.  

Would anyone choose BODY over MIND?

I put this query on Facebook two years ago, today.  On that day, my brother was being criminailzed, spending months in the Oklahoma Forensic Center (OFC) in Vinita, OK, awaiting a level of "competence" to return to face trial in Tulsa.  Thankfully, we were able to save him from all that. But it wasn't easy, and it's just the beginning.


There were several reply/comments to "mind or body", including:

"... if you had a healthy body but not a healthy mind, you might be blissfully unaware that your mind was lacking. However, if you had a healthy mind but an unhealthy body, you would always be painfully aware that your body was sick. It's really a very tough decision."

To which I replied:  
 "An unhealthy mind is not bliss.  
You can't take care of your body or anything without being able to THINK.  
This is precisely why it should be obvious to some old school "minds" that torture of the brain is MUCH WORSE than torture of the body.  There is no comparison.  
Then again, I was warned that Oklahoma is medieval when it comes to mental health.
  Primitive doesn't even cover it."


Our family was calling a long list of attorneys at that time in 2017 in an attempt to file a GTCA tort claim before the one year deadline.

The attorneys I called said they care about the mental health situation, but they're all talk.  Just being "nice."  Nice gets us NOWHERE.  Stop with the niceties and get real about this HUGE, MASSIVE PROBLEM.  We got no attorney to file the tort.  If you'd like to see it, here's the blog link:

Another reply: 

 "Definitely Mind. Just saying."

And another:  
It "depends what we mean by healthy or not healthy mind.  
I am used to what my mind does, and think I can handle it, but hate physical pain or sickness - do not tolerate it well."

My reply:  
"But if you couldn't use your mind to think clearly.  That's what the mind is think for us."

Several replies with the one word answer:

A very compassionate friend typed:  

"Either way would be miserable."

I said: 

 "Yes of course, but hypothetically.  
For instance, Stephen Hawking could still use that brilliant mind and be a force in this world for the good of many, even without the use of his body."

A sweet, long time friend said this:

"Have been living in a sick body with a somewhat healthy mind. Let me say, the pain of the body can be torture on the mind. My logical choice is mind. My experience being in pain says body. Not a decision made out of vanity at all.

My reply:  

"I'm sorry you're in pain.  My mother lives with gross pain, as well.  It's horrible."

And in a separate comment, I continued: 
"If you have a sound mind you can go to school.  Own a home.  Have a job.  
Love someone and be loved.  Possibly have children.  Be a responsible citizen.  
You make choices, positive or negative, 
but at least you're thinking isn't impaired and you CAN MAKE them.  
Without a sound mind, you have none of these.  
No one [with an unsound mind] can be in a healthy relationship/marriage...
yes you can love them, but it's all ascew.  
Irrational thinking with delusions (which are real to that person) 
bring out thoughts like "you're not my real family" 
which causes exponential tragedy, heartbreak, anger, 
and [possibly] even violence due to that former "real" family being gone.  
Loss is immense in that tortured mind.  
Mocked and scoffed and abused and mistreated and looked down on at every turn.  
Not valued as a human being. 
[Those with an unsound mind] have to live on government assistance 
because they truly CANNOT hold a job, 
even though they want to work and take pride in work."

The choice has been taken from them for no fault of their own.  
They cannot even take care of themselves 
because for whatever reason, the thinking isn't real.  
Thinking can be ruled by delusions, or a vareity of psychotic patterns.  
Paranoia, mania, hallucinations...  Constant torment that cannot be averted.

Nothing, I say NOTHING is worse than living this life.  
I choose a sound mind ANY DAY, over the physical body.  

Until you've been around it, it's difficult to imagine the layers of complex hardships, impossibilities, voids, lost potential and dreams. 
 It's a loss of life, really.  
Without a sound mind, "life" isn't even on a real plane.  
Everything is questioned, and nothing is solid.  Very sad.  

Tragedy doesn't even come close.


A dear lady that has a loved one affected, said a heartbreaking and true statement:

"I have said many times, 
I grieve my child that is still living."

She is not alone.  

My reply:   
"My mother has said that, too.  I'm so sorry...  I do understand."

And she so kindly said:

"I understand exactly how you feel too.  I am so very very sorry."

It's a rare person that truly gets it.

I said to someone recently in a conversation,
 "People don't get it, until they get it."  
Meaning, until they are directly affected by it.  

This is another one of the complexities.  It's TOO DIFFICULT.  
Everyone has trying lives and troubles of their own, so who has time, energy, or enough compassion to wrap their minds around THIS gargantuan issue?  I get it.  
This is the reason I write - in an attempt to touch people's hearts with personal stories.  
It's going to take a societal mindshift to make the necessary changes.  
If even one person is moved to care and act on that care, my job here is a success.

I continued on the Facebook thread with these truth rants:

"Not to mention [the SMI/Seriously Mentally Ill are] thrown in jail to be raped and beaten and left alone for months simply because their mind isn't sound.  
This would never happen because someone's body isn't working 
or because of having to live in pain.  
Then there's the part about the person without sound mind being feared.  
And homeless and hungry and dirty and diseased, 
and the family can't have [this person] live with them because they're sometimes scared [of being hurt] due to delusions.  
Imagine how a mother feels if her son is not of sound mind and this has been his life.  
Yet, he is still kind enough to say "I've lived a good life" while incarcerated, because jail has been such a "normal" for him.  
GOOD GOD.  Why can't we help these people???!!!!!!!  I'm so mad."

Then things got really real. 

My post says:

"And this is truth.  I'm not afraid to say it.  
I'm jealous of all the other mind issues that garner compassion and love, 
instead of fear and punishment. 
 I'm jealous of alzheimers and autism.  I'm jealous of the developmentally disabled.  
This is how horrendous it is.  
Those HORRIBLE AND DEBILITATING DISEASES everyone has compassion, empathy and love for.  [The difference is], they don't get thrown in jail for those diseases.  
And yet...someone without a sound mind can "test" SMART, so they don't qualify for the same level of government assistance that the developmentally disabled do.  
They get NOTHING.
ONLY DISDAIN and FEAR and PRISON and NO LEGAL HELP and kicked to the curb.  
It's a harsh reality but IT IS REALITY.  
How sad is it that I'm jealous of those horrible diseases?!  
I do apologize. I realize it's offensive.  
But for my brother's sake, 
I wish he were treated with compassion and kindness and love 
and people brought casseroles and well wishes.  
But that's not the reality of serious mental illness.  
[At times] we fear it. [But most of the time, it's daily dealing with the delusions].  
We want it to go away.  FOR REAL WE DO.  
But in the mean time, how about we learn to be good people and CARE for them, 
instead of shaming them and punishing them?!
 It's hard.  But until we look at it realistically, nothing will ever get better."

Then the friend that has the mentally ill child commented again:  

"I wish I could like this a million times.  Because a million times I say are right.  Every bit of it right.  This breaks my heart.  All of it...then you have the looks and stares.  And goodness if they happen to talk to themself or some other odd behaviour.  The, can't you control him.  Or just the looks of fear and distain in general as though we the parents or family members in some way have caused illness."

My reply to her vulnerable and heart-wrenching comment:

"So true.  
So heartbreaking.  
Blame and shame game.  
Horrible and tragic on every level."


That was the FB post on my wall, June 7, 2017. 💔

I feel bad saying I'm jealous of those with terrible diseases.  
Please know, that comes from a place of constant trauma.  
I'm not diminshing others' pain and suffering.  
More specifically, my envy stems from THE REACTION of the world 
to those suffering from the other brain maladies.  
The way they are treated by society.  That's what I'm referring to. 
I'm only human, so please forgive me.  
 God help us, all.
***** None of these debilitating issues are choices. ***** ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Improvements since that 2017 post:  
This family paid brave, private attorneys a boatload of money to do what should always be done: 

Defend the rights of the seriously mentally ill.  

We are proud of this effort, and grateful beyond words that we saved our loved one.  It shouldn't take six figure $$$$$$ and half a year of legal safeguarding to prevent the punishing of these disabled individuals.  The result:  All charges were dropped.  They were bogus.  The system for these indigent, suffering citizens is set up for failure, and has to change.

This is why we continue to work VERY HARD every day, to develop appropriate assistance.  The Legal nonprofit is forming, and looking strong!  Attorneys deserve to be paid for hard work. And mental health work doesn't currently generate income.  Thus, coming soon... #WJWMHLF

It's a long, slow road, and we will not stop until the future never again mirrors insane, repetitive, past practices of an antiquated, backward, punitive system.  People with Mental Disabilities should NEVER be punished for their disability.  It's beyond wrong.

For Jeff, and all the other "Jeffs" out there.

~Jackie Welton DiPillo