Saturday, January 30, 2010

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:

Tuesday, January 26, 2010

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…”

“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

Monday, January 18, 2010

just another Saturday night

"It's seven o'clock and I want to rock
Want to get a belly full of beer"

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”

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"

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"

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"

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

Friday, January 15, 2010

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:

Thursday, January 14, 2010

'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

Wednesday, January 13, 2010

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:

Sunday, January 10, 2010


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:

Friday, January 08, 2010

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:

Caregivingly Yours, Patrick Leer
web site:

Wednesday, January 06, 2010

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:

Sunday, January 03, 2010

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

Friday, January 01, 2010

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:

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