Adverse Information on Health Care Practitioners

On March 1st, the National Practitioner Data Bank for Adverse Information on Physicians and Other Health Care Practitioners becomes available to hospitals and other eligible ‘queries’.

Originally created 22 years ago by Congress, it was intended as a one stop clearinghouse to check for disciplinary actions taken anywhere in the country against health care professionals.

This expanded version includes not only doctors and dentists but all licensed health care workers such as pharmacists, technicians, nurses, and aides.

ProPublica and the Los Angeles Times offer an investigation into problems with failed oversight, missing data and flaws in reporting and compiling of data by both Federal and State governments. Dangerous Caregivers Missing From Federal Database 

Unquestionably there are pluses and minuses whenever government collects and compiles data no matter how well intended. A month ago in ooops! Government looses hard drive I shared my own experience.

What hits me right up side the head about this data bank is who is authorized to query.

What about ‘we the people’? Are we not the ultimate employers of health care?

What is this … government knows best … hospital knows best … lawyers know best … BUNK! Who is more affected by ‘adverse information on physicians and other health care practitioners’ than the people receiving care?

On the White House web site you can read “My Administration is committed to creating an unprecedented level of openness in Government … Transparency promotes accountability and provides information for citizens …” I guess you can find graffiti anywhere.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

WE laugh in the NOW. I remember for us both.

Pondering the dichotomy of change and caregiving over morning coffee a robin alighted on the snow outside my window. Omens are too weird over the first cup of coffee. I left Stardust to monitor nature’s contradictions while I took my head for a walk.

A month ago I shared in an entry, Whac-a-problem, about a change in Patti’s room assignment at her care facility.

While the change was a week of angst for me, Patti on the other hand summed up the transition, “What room?”

Why does it rub me wrong when a friend shares how much insight they have gained into cognitive decline of a 50 something woman from a fictional novel? Is fiction more ‘understandable’ than real life? Maybe it is.

We have been living a battle with cognitive decline, memory loss, and dementia-like symptoms of Multiple Sclerosis for almost 10 years. Real life is not only exhausting but long, slow and filled with wildcards. It is not as easy to gleam information from.

I think when she cannot. This role I do not enjoy. You pressure yourself so much more when required to think for another.

As a caregiver I replace and keep replacing that which is lost. Is it sad if Patti cannot remember some outing or activity shortly after it happened? I cannot answer for her. I simply conjure up another ‘now’.

‘We’ laugh in the NOW. I remember for us ‘both’.

Tell me grasshopper which is more important, the life we live or the life we remember? 

 Caregiver's Perspective: Multiple Sclerosis and Cognition 

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

Miss Pickle to marry Mr. Pickle

Some days you just have to smile!

Back on New Year’s Eve, Patti and I enjoyed a fun and totally accessible evening in Dillsburg, PA. Pickle drop at Ireland’s midnight in Pennsylvania 

How could I not smile out loud as I read this morning’s email:

Long-Awaited Wedding Date Chosen!

Dillsburg Area Business Association is pleased to announce the nuptials of “Mr. Pickle” to “Miss Pickle” will be held during PICKLEFEST on Saturday, May 8th, 2010.

The Public Ceremony begins at 11:00 AM. Guests may register at 10:00 AM for $2, at NYCHAPS’ Maple Shade Barn on the corner of Greenbrier Street and Harrisburg Pike. Proceeds benefit the Northern York County Historic & Preservation Society.

Wear official wedding colors, green and purple, or create pickle-themed attire to be considered for selections of Maid-of-Honor and Best Man. All registrants take part in the ceremony and will appear in the Wedding Album.

Dillsburg Mayor Henry “Hank” Snyder will officiate the service. The bride’s gown was lovingly donated by Dillsburg’s “Bon-Ton” Thrift Shop.

You can bet this is marked on our calendar!

"You know you're in love when you can't fall asleep because reality is finally better than your dreams." -Dr. Seuss

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

Snow Removal for People with Disabilities

Curb cuts are inadvertent victims of street plowing. Accessible parking spaces do seem to be too frequently used for snow piles. Ramps and inclines can get treacherous.

New Jersey pioneered a “Snow Removal Law” in 1999 to enforce removal of “snow, ice, or other obstacles from accessible parking spaces, curb cuts, and other improvements designed to promote accessibility”.

As a 20 year veteran of Multiple Sclerosis caregiving and wheelchair pushing, I do not believe plow operators, businesses, and homeowners are really criminal minds. I find most people simply overwhelmed by snow storms in general and unaware, bordering on oblivious, of the ripples that deny access to others.

As much as anyone I was thrilled to see snow plows keeping our neighborhood streets open. However where are they going to put it? Here Pennsylvania “may inconvenience the property owner by plowing snow onto the sidewalk rather than allowing snow accumulation to become a hazard on the highway.”

Inconvenience? It was difficult to tell if I was shoveling plowed snow off my sidewalk or spelunking.

While the pictures below may appear to signal my success restoring our sidewalk’s access for Patti, there is also a curb cut still buried under the snow to Patti’s left.

But that is a project for tomorrow. Today was Valentine’s Day, Patti seemed impressed visiting our snow canyon before we headed off to some fun and dinner at Hollywood Casino at Penn National Race Course.

We spent a couple hours enjoying penny slot machine physical therapy with Patti alternating her left and right arms as she pulled the slot machine lever, with of course breaks for cigarette smoking therapy for eye hand coordination. Started with $10 and cashed out with $11.01!

Laughter and good times are accessible. Too often their greatest obstacle is time and effort.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

get your caring mojo going

Once upon a time, by one magical ‘dawn's early light’ …

‘we the people’ were blessed with snow from ‘sea to shinning sea’.

49 states dusted with snow; Hawaii's the holdout 

Get your caring mojo going! Living with a disability is living on the edge whether independent or assisted. There is no extra time in a day.

Embrace winter! Enjoy snow! Look around and CARE. Helpful services such as ‘Meals on Wheels’ are often suspended. Would you like to go without a meal for a day? Wondering why your neighbor’s driveway is not shoveled? Stop wondering – shovel it.

As the inches pile up, so do your chances to care.

Here is an excellent example from the Nation's Capitol:
Schools Ask Community To Help Shovel Out

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

'Friends' torture, kill disabled woman

No horror writer could even write much less imagine the following:

A mentally disabled woman was fed vegetable oil, spices, detergent, urine and medications, then forced to write a suicide note, stabbed to death, wrapped in plastic, put in a garbage can and dumped in a school parking lot …

Her head had been shaved, and she had been bound with Christmas decorations and clothing; she also was hit with a towel rack, vacuum cleaner hose and a crutch

Sadly this is not fiction. Five adults and one youth are all charged with criminal homicide and kidnapping, and being held without bond in the Westmoreland County, PA prison.

Jennifer Daugherty had become involved in a community center in Greensburg, PA where she met several people whose names she had mentioned to her family as ‘friends’ - including several whose first names share those of some of the suspects.

Jennifer Daugherty rest in peace.

Pa. family: 'Friends' torture, kill disabled woman

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

activities of daily living / child of the north wind

While a snow storm may temporarily inconvenience “the things we normally do in daily living” imagine your personal activities of daily living (ADL) slipping out of your control permanently.

Multiple Sclerosis is a relentless and random thief of one’s abilities to perform ADLs. There is no thawing change in seasons.

Maybe it is because winter and snow have always been energy sources for both Patti and I that the unfairness of MS seems more outrageous.

Patti was an avid skier and with her long term memory more vivid these days than her short term memory well snow storms trigger recollections of slopes of powder. All the more I wanted to rail at the heavens when I went to pick her up for our pre-blizzard outing and watched her needing the assistance of three aides plus a Hoyer lift and sling to get out of bed, changed, and dressed.

Instead I found strength from her good spirit and laughter through it all. No lift tickets these days but instead a wheel chair accessible smoking lounge on wheels.

Heading back home it was time for me to take on Winter. Since Punxsutawney Phil saw his shadow on Groundhog's Day, 40” (1.02 m) of snow has fallen on our little piece of the Earth.

Piles of shoveled snow plus drifts are getting rather epic. Media talking heads claim we have more snow than the Vancouver Winter Olympics.

Conditions were so bad on Wednesday birds took shelter in our lilac bush shielded from blizzard winds.

While I battled to keep the driveway clear, township snow plows arrived as the storm was kissing us good bye. Trying to maintain our tradition of picking Patti up for a post storm outing I was foiled as Pennsylvania closed three major Interstates, which in turn transformed secondary roads into parking lots.

Alas! At least as a fellow child of the north wind, Patti knows that sometimes the mountain wins.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

shoveling snow for a cat

22 inches (56cm) of snow can affect life, yet cats help us all keep it in perspective. Our cat, “Stardust” could not push open the flap on her cat window this morning. It was time for yours truly to get busy, and supervised.

Before I could start on our vehicles and driveway, additionally a cat trail was necessary in the back yard.

Back in December a 22 inch (56cm) snowfall left me stranded for two nights. This time it was on my home court, bring on the rematch!

Unquestionably heavy snow falls also affect both visiting and/or outings with Patti. There is some intangible balance between safe travel conditions and keeping Patti part of life outside her care facility walls.

"Neither snow, nor rain … stays these courageous couriers …” Yes, the Greek historian, Herodotus was referring to Persian mounted couriers, 2500 years ago, but it equally applies to caregiver mentality.

So we bookended the snow storm with outings. Lunch and errands as the first snow flakes fell, Friday afternoon. Then after spending today shoveling, I managed to navigate our wheel chair van for a Saturday evening outing.

Interestingly I found Patti already in bed when I arrived to pick her up. She told me she was not feeling well and had been throwing up all day. Not that I do not believe her but I know that Multiple Sclerosis related memory loss and mental confusion sometimes gets the better of her. Checking with nursing staff and aides they were not aware of any vomiting, nor had Patti complained of not feeling well. Whatever! The offer of an outing and a ‘smoke’ instantly cured the patient and she was ready to roll.

While we managed to be out and about, few others could say the same. “Pennsylvania Gov. Ed Rendell declared a statewide disaster emergency … National Guard forces were deployed to help state police” Unfortunately, not much was open, even McDonald’s was closed!

Yet one wheelchair van rolled through the streets with two occupants having a grand old time enjoying the snow.


Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

Aid to Pennsylvania's disabled is cut

Beginning Monday, more than 300,000 Pennsylvanians, “poorest elderly and disabled”, will see monthly Supplemental Security Income shrink by 6%.

“Pennsylvania’s budget signed by Gov. Ed Rendell in October cut Supplemental Security Income by about $10 million” … Aid to Pennsylvania's poorest elderly and disabled is cut 

This is not unique to the Commonwealth of Pennsylvania economic times are forcing budget cuts across the US.

For some this loss may translate to be $5/month. Insignificant? Understandable? That depends.

The ‘abilities’ of the “poorest elderly and disabled” have already been ‘cut’ physically and for many mentally. Alternative income is rarely an option.

Even the able bodied, able minded are finding their income shrinking or disappearing. Should one population have a priority over another?

In his State of the Union speech, President Obama claimed “it's time to try something new. … Let's try common sense”!

OK! Here is a ‘common sense’ idea.

Lobbyists spent nearly $125 million on just the Pennsylvania State Senate back in 2006. State Lobbying Becomes Billion-Dollar Business 

Rather than wine and dine legislators, how about trying to influence State legislation by gifting the “poorest elderly and disabled”.

Instead of cutting 6% per month, the lobbying money spent on the State Senate alone could add $35/month.

Some legislator may not get his/her pockets lined but their constituents would be less needy and without any additional government debt or taxes.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

Ooops! Government missing hard drive

Imagine my surprise to open a letter and read:

“… we are writing to you because we have determined that personal information identifiable to you, including your social security number, may have been exposed to others …

We are sorry for any inconvenience this incident may cause you…”

WTF!

“The National Archives and Records Administration (NARA) learned in late March 2009 that an external hard drive containing copies of backup tapes from the Clinton Administration is missing …

…The records on the missing hard drive generally contain system and working files from … within the Executive Office of the President ...”

Not only am I now ranting and raving about government record keeping but what was the Clinton Administration doing with my personal information in the first place???

While wailing about being interred on some hard drive with the characters of the Clinton administration, saner members of the household helped me to focus.

Ah yes! There was my involvement with the White House Easter Egg Roll of 1995. Positioned only yards from the Oval Office yeah there was a background check.

Back to the problem at hand, what is the government doing about it?

“launched a full-scale criminal investigation… a reward of $50,000 … (for) recovery of the missing Western Digital MY BOOK external hard drive … Call US Secret Service Washington Field Office 202-406-8800.”

Of course they are not even sure when

“missing hard drive was last seen sometime between October 2008 and the first week of February and was discovered missing on or about March 24, 2009”

and I somehow have problems with this assumption.

“it seems more likely that the thief was interested in using the equipment as a backup drive rather than misusing the information it contained.”

NARA is offering affected individuals free credit monitoring services including fraud resolution and identity theft insurance coverage. If all else fails, “the Social Security Administration may assign you a new number.”

As if life does not have enough challenges, welcome to the era of digital Government!

"We are sorry for any inconvenience this may cause you” 

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer

just another Saturday night

"It's seven o'clock and I want to rock

Want to get a belly full of beer"

ELTON JOHN

How about a belly full of ibuprofen before heading out to pick up Patti from her care facility for a Saturday night outing?

My back was still screaming from Friday night’s outing as I had needed to not only get Patti up and out of bed and transferred to her wheelchair but also dressed and changed. Progression of Patti's Multiple Sclerosis symptoms (EDSS > 8) prevent her from helping.

“Hey now, Saturday night is the loneliest night of the week

And I sing the song that I sang for the mem'ries I usually seek”

FRANK SINATRA 

Patti: “Thank God! - I am so glad to see your face!”

With that greeting, how can I complain?

“We're going out tonight, out and about tonight.

Oh, whatever makes her happy on a Saturday night"
SUEDE

Patti’s first request was a cigarette then shopping for toiletries. Care facility provided toiletries lack any personalized scents, flavor of toothpaste, etc.

Then on to cinimamon sugar pretzel sticks and a Hershey Dark Chocolate milk shake. After that Patti and/or MS fatigue was ready for bed.

"Gonna rock it up, roll it up

Do it all, have a ball"

BAY CITY ROLLERS

After transferring and tucking Patti into bed, I pulled myself into my van seat and took my back home for hot batherapy.

Soaking in the tub I daydreamed of this picture of Moet and Mentholatum from The Wheel of Fortuna blog about caregiving and Multiple Sclerosis.

Not exactly a songwriter's Saturday night but then again songs never change while people's lives do.

"Leaving the town in a-keeping of the one who is sweeping

Up the ghost of Saturday night"

TOM WAITS

OMG am I becoming a Saturday night ghost whisperer? Say it ain't so!

Sir Elton, help me!

"Saturday night's alright for fighting

Get a little action in

'Cause Saturday night's the night I like

Saturday night's alright, alright, alright"

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer

caregivers at increased risk for stroke

My first reaction to reading this was “duh” followed by “thanks” for making insurance for caregivers more complicated and/or expensive.

“A study published in the February issue of Stroke: Journal of the American Heart Association (Vol. 41 #2) reports that the strain associated with caring for a disabled spouse can significantly increase the caregiver’s risk of stroke…” Spouse Caregivers at Increased Risk for Stroke 

It occurs to me that the money spent to study caregivers’ risk of strokes could have been better spent significantly decreasing many caregivers’ risk of strokes. But then what do I know!

There should be a rule about spending money. Helping people should have a priority over studying them.

Whatever for caregiver convenience simply print and paste the following on your forehead.

Then again to all others concerned about a person needing care. A caregiver's health is at best an assumption.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

'accessimals' Pennsylvania Farm Show

24 acres under roof, spread throughout 11 buildings the Pennsylvania Farm Show is the largest indoor agricultural event in America and somewhat of an Olympics for physically challenged visitors and caregivers.

Expanded “handicapped parking and access areas” are a plus however there is always a time consuming logjam at the too few elevators necessary to move between buildings if you are not a walker.

Yet we have learned to navigate between buildings through the outside, backstage world of exhibitors and animals. 

No logjams out there and with 50 °F (10 °C) temps in January it was a beautiful day for visiting, like with a guy who mucks out the stalls wearing a t-shirt, “shit happens”. Priceless!

Bent Pine Alpaca Farm caught our attention not only because of their unusual farm vehicle but their story of a small "mom and pop" ambulance and wheelchair van service transitioning to alpaca farming.

There is no condescending treatment or ‘invisibility’ involved with a disability around animals. Goats are always the most interactive and this one had no scrupples about luring Patti closer so he could try and take a bite out of her wheelchair.

Less manipulative than goats, this draft horse, this size of a dinosaur, could not have been gentler in dealing with Patti.

Yet the real lure is the food court! Dairymen’s Association for milkshakes, Mushroom Growers for breaded mushrooms, Livestock Association for lamb stew then Potato Growers for a potato donut for desert and a bag to take back to care facility staff.

Patti’s Multiple Sclerosis symptoms of lack of eye-hand coordination and inability to keep her hand stable enough to hold a spoon of stew necessitates me feeding her. Patti had no qualms about that, she wanted lamb stew! And if I may say so it was the best I ever tasted.

Patrick: Patti! What is that animal next to you?
Patti: I can’t really tell, I think it is an armadillo.
Patrick: An armadillo? Your head is a strange place.

Patti: (dissolving into laughter) Yes it is! And it sure needs a nap.

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer

healthcare the vote heard 'round the world

Is Massachusetts some root for historical change? Revolutionary legend and lore echoes of the "shot heard 'round the world" at Lexington Green. Next week Massachusetts voters cast not only their vote for US Senate but essentially a proxy vote for current US health care reform legislation, as the critical 60th US Senate vote is at stake.

Outside looking in I see a political version of the Mad Hatter’s Tea Party.

On one hand the White House exposes health insurance companies for attack ads:

“A new report today confirms one of Washington’s worst-kept secrets – that big insurance companies are fighting tooth and nail to kill health reform that will wrest power from their hands and give it to American families. …” White House Exposes Health Insurance Companies On Health Care Reform 

Yet, at the same time with the other pocket …

“…the health lobby is riding to the rescue of the Massachusetts liberal … the host committee for the fundraiser includes lobbyists for Pfizer, Merck, Eli Lilly, Novartis, UnitedHealthcare, Blue Cross Blue Shield, Humana and other insurers … lobbyists from America's Health Insurance Plans and Pharmaceutical Research and Manufacturers of America, the major trade groups, were on hand too…” Coakley's Saviors: The health-care industry rides to the Democratic rescue 

Turning down the backstretch the race is neck and neck. Martha Coakley (Democrat) leads with 49 percent over Scott Brown (Republican) at 47 percent and Joe Kennedy (Libertarian).

Lobbyists, big money, and national attention aside, Massachusetts was the first State to not only tackle health care reform but experience living with it. While this is their election for their US Senate seat, who better than the people of Massachusetts to cast the first proxy vote on national health care reform.

------------ 
updated 1/19/2010
Scott Brown (Republican) WINS with 52%, Martha Coakley (Democrat) 47%, and Joe Kennedy (Libertarian) 1%


Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

Whac-A-Problem

Long term caregiving for Multiple Sclerosis is too often like playing Whac-A-Mole.

Up pops change!

That change by default affects me as caregiver and medical advocate, when MS level of disability is as high as Patti’s (EDSS score > 8). Frustration is an understatement and depressing is not a manly-man word, so my head is somewhere in between.

Long story short – Patti needs to move from her room in one wing of her care facility to another.

Typing the above paragraph it does seems like a non-issue. However when you have to make decisions for someone else who cannot direct their own care, believe me, nothing is ever a non-issue.

As much as you want to believe you have care under control you never really do whether at home or away.

Up pops change!

Changes in the bigger picture of the business of long term care have eventually rippled down to the simplest.

Back in 2007 the National Commission for Quality Long Term Care observed “a shift among nursing homes towards the delivery of short-term, rehabilitative post-acute care, mostly financed by Medicare.”

While I have been aware of their business transition converting one wing to short-term, rehabilitative care I have been somewhat sticking my head in the sand. On the other hand Patti’s care facility has been busy waiting for and reviewing the optimum best of possible change in room scenarios for Patti.

I should be comfortable that a ‘team’ is not only caring but working to find the best transition.

Patti herself ranged from oblivious to indifferent when we talked about it. Significant topics usually require a couple days of attempted conversations to break through the MS cognitive and memory symptoms.

Grasping for distraction, I found an old picture from 1983 of Patti and I playing whac-a-mole before Multiple Sclerosis.

Yet this is now and it’s back to whac-a-problem.

“If I had a hammer
I'd hammer in the morning
I'd hammer in the evening
All over this land”

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

cluster headaches - fall out

Sorting through an abnormally unruly pile of year end paperwork waiting to be filed, I am forced to remember that 2009 included my longest and worst episode of cluster headaches, 9 weeks in duration with 95 cluster headaches.

“If someone in your home is seriously ill …”, I never really even noticed that line on a late utility bill from that period until recently sorting files.

Was I seriously ill? Are cluster headaches disabling? Debilitating?

Yes, yes, and yes but only during an actual cluster headache and that could mean 15 minutes up to 2 hrs in duration. One would be hard pressed to find a medical professional to declare you seriously ill, disabled, or debilitated for intermittent specific blocks of time.

And of course who except someone who actually has cluster headaches can understand the fall out of the shell shock and sleep deprivation that accumulates between cluster headaches as the episode runs its course.

So how do you answer the question, “If someone in your house is seriously ill…”? Not NOW, but if you come back around 2:30 AM and watch you will see a horror short that will freak you out of your skin.

However that was then and this is now. 2:30 AM will find me asleep!
-----

Curious what the picture is of? Guessed yet? … You are looking at discarded blocks of ice from our backyard bird bath.
-----
For more cluster headache entries:
CLUSTER HEADACHES: BRAIN WRITHING ON A CORKSCREW

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

electronic health records

Remember almost a year ago?

“… the Obama administration plans to spend $19 billion to accelerate the use of computerized medical records in doctors’ offices. Medical experts agree that electronic patient records, when used wisely, can help curb costs and improve care….” How to Make Electronic Medical Records a Reality, The New York Times, Feb 2009

For seven years I have had my yearly physical in the same medical office and my blood work sent to the same lab. For seven years I paid my co-pay at the time of my physical and medical insurance paid for everything else.

Welcome to the era of Electronic Health Records! I got bills! After way too much time wasted on hold and or trying to get through electronic voice prompts, hallelujah! I reached a living human being.

Apparently the foundation of training for the transition to electronic health records is ‘finger pointing’. Little to no training has gone into how to fix anything. Unless of course the plan is for the patient to spend hours on hold or trying to get through electronic voice prompts to figure out the problem and fix it themselves.

It seems electronic records are only as good as the people that have to begrudgingly input data into them, apparently as little as possible or as inaccurately as possible considering the constant interruptions of any physician’s office.

Even Patti got a certified letter containing a bill at her care facility requiring her signature!!! Theoretically an impossible scenario, that is, until the era of electronic health records.

Dear Mr. President … any room in that $19 billion to reimburse “we the patients” hours on hold?

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

teen autism: diagnosis, a hitchhiker's guide

Confusion is never good when it comes to support and help. From the outside looking in, yes, teen autism is beyond confusing.

Teen autism has been around. It just may have been diagnosed differently and certainly treated differently. Yet this is now and this is our time.

Autism (from the greek word meaning “self”) was first used in psychiatry in the early 1900’s as a symptom of schizophrenia.

In 1994, the American Psychiatric Association revised their Diagnostic and Statistical Manual of Mental Disorders (DSM-IV).

Following this, the number of students aged 6-21 with ‘autistic spectral disorders’ increased by 885% between 1994 and 2006, while during the same period the population of the United States only increased by 14.7% “New Data on Autism Spectrum Disorders (ASDs) from Multiple Communities in the United States.” CDC 2007

Debating semantics of a health problem is a bit like everyone standing around pointing fingers about what to call the hole in the dyke while the little Dutch boy spends the night plugging it with his finger.

At the crest of this growing wave of children are now teens and young adults unable to care for themselves or even communicate. They need dramatically different resources.

Lacking any psychobabble initials after my name I put together an amateur visual aide for myself with types of teen autism and more familiar IQ scores to better understand.

This hitchhiker has only shared living with severe teen autism and moderate/mild mental retardation to the left of the pictured spectrum. That is what teen autism means to me.

Teen autism resources and services are limited and must be mined by families, too often competitively. A parent living with lower functioning teen autism and unable to leave their teen unattended has less time. Is it fair, no!

Then again, who should get the limited resources? That’s playing God time, and way out of my league.

Bottom line there needs to be more help and support and a lot less confusion.

Caregivingly Yours, Patrick Leer
videos: http://www.youtube.com/daddyleer

pickle drop at Ireland's midnight in Pennsylvania

Sometimes you just get lucky. With “winter mix” forecasted to glaze the evening hours of New Year’s Eve I stumbled across a news item that Dillsburg would be dropping two pickles this year.

Mr. Pickle would be traditionally dropped at Midnight, however Ms. Pickle would be dropped at 7 PM to coincide with Ireland’s midnight celebrations and as an alternative for all those who wish to celebrate earlier.

It seems the original founders of Dillsburg were Irish immigrants.

Yet considering Multiple Sclerosis fatigue this was tailor made, and it gets better. … Ms. Pickle would be dropped “inside” the fire house.

Bring on that winter mix! We headed to an indoor New Year’s Eve pickle drop.

Dillsburg is a small enough town that I could call the home of the pickle drop organizer and ask about accessibility. Her husband’s suggestions for parking and wheelchair access were absolutely perfect!!

Then again maybe it isn’t all about luck. My maternal grandmother was born in Ireland near Kilcully in County Cork. Maybe some Irish DNA at work here? … Athbhliain faoi shéan is faoi mhaise daoibh = Happy New Year’s to you in Irish Gaelic.

It was a hoot! Pickle soup was surprisingly good! We even took a quart to go back for staff at care facility. I boldly tried a chocolate covered pickle, Patti refused. Not bad but not as good as the pickle soup.

Games, activities and a magician entertained while we waited for the countdown to the pickle drop.

The lowering of Ms. Pickle was a classic that is until the rope snapped and Ms. Pickle crashed to the floor.

While I may need psychiatric help to overcome the trauma, Patti on the other hand found this hysterically funny.

All in all, it was a best of possible “living with Multiple Sclerosis” New Year’s Eve. Accessible, weather proof, laugh filled, and Patti was tucked in bed by her preferred bed time of 8:30 PM.

Thank You, Dillsburg!

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

car talk for caregivers

Is it possible to wear caregiving on your sleeve? I am beginning to wonder if it is not some kind of aura.

Our old faithful 2000 Ford Taurus SE Wagon was declared ‘totaled’ on Christmas Eve following a snowy accident the week before. (stranded in the snow)

Ever since living with Multiple Sclerosis entered our lives vehicle needs are different than most people.

Pulling out my measuring tape tends to derail sales pitches. There must be room for a wheelchair or scooter. While yes we have our Dodge Grand Caravan IMS RampVan (wheelchair van), our second car must be able to serve as a back up.

Patti needs the option to pull herself up on the vehicle’s door frame out of her wheelchair, the strength of door and height of vehicle matter. You may be surprised how many vehicles only have a door bottom with the upper part window glass only.

Dealers often were in the ‘inquiring minds’ mode. Some either had a relative or friend caring for an aging parent or special needs child.

They more than knew the ‘statistics’ of US auto accidents after all it is part of why people need to buy cars. 

The ripple effect of those dependent on that ‘statistic’ is a sobering perspective. Every 12 minutes someone dies, every 14 seconds someone is injured in an auto accident – what happens to those at home dependent on that person?

The majority of car accidents occur less than 5 miles from your home. How many home caregivers roll the dice every day, just quickly running out for something?

To me a 20 yr caregiving veteran, that’s life. I was surprised to see non-caregivers give it thought and concern. Of course, they are sales people and who knows how genuine.

Whatever … after days on the internet and days visiting dealers it was time to park a 2008 Kia Rondo V6 LX in the driveway, kind of a station wagon on steroids.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer