Caregivingly Yours

stranded in the snow

2009-12-23T11:06:00.001-05:00

Driving home from Washington DC Friday evening (Dec 18) with only the earliest traces of snow beginning to fall, another driver lost control of his car spinning across 4 lanes of traffic ricocheting off a Jersey barricade and ending up crashing onto the front of my car.

Fortunately no one was injured, unfortunately my vehicle was disabled. Towed to the closest hotel I was swallowed by the ‘Blizzard of 2009’ as snow continued to fall for over 24 hrs totaling 22 inches (56 cm).

With daylight I went hiking in zero visibility snowfall in only walking shoes to forage for toiletries, food, and a change of socks and underwear. I discovered a Burger King basically catering to snow plow operators. When is a whopper “haute cuisine”? When it is the only hot meal in 36 hrs.

Stranded you meet people you never would have ever met or shared a warm cup of coffee with. After two nights at a Red Roof Inn I was finally ‘extracted’ Sunday afternoon by Jennifer and Tyler!

Procrastinated shopping and holiday activities are now replaced by insurance related activities and ‘waiting’.

It is oh so easy to be blinded by frustration when there really is so much to be grateful for. Even the driver who crashed into my car called me to apologize and thank me. He had been praying and thanking God for sending me to that moment in time when his car was spinning out of control; so many catastrophic outcomes could have happened.

So far, GEICO representing him could not be trying any harder to make things right. While tempted to declare their gecko as my new BFF, let's see how this plays out, first.

When I finally could spring Patti for an outing from her care facility she was in good spirits and ‘yes, no, maybe’ kind of aware of my odyssey. Multiple Sclerosis memory loss and mental confusion creates its own timeline. Though she was certainly ready to roll decked out in her wheelchair gloves and holiday painted nails.

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

The Care Jacket

2009-12-18T12:08:00.000-05:00

The weather outside is frightful but this offer is so delightful.

Join one of the latest pop-culture phenomena!

The Care Jacket™ keeps you totally warm and gives you the freedom to use your hands!

Perfect for:

Pushing wheelchairs
Transferring
Promoting your favorite care products
And much, much more

Buy one NOW and get this eclectic caregiver collectable, “The Transfer”, Free!

Watch out Snuggie! WE are 44 million strong in the US and growing.

P.S. All pictured products are figments of this author’s imagination, but “one never knows, do one”?

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

It's the MOST DANGEROUS time of the year

2009-12-15T15:40:00.000-05:00

With those holiday greetings

and gay happy meetings

When friends come to call

It's the MOST DANGEROUS time of the year

“ …dealing with relatives and having to spend more money during the holiday season contribute to your stress level. … fatal heart attacks peak Christmas day and New Year's Day. …”
HOLIDAY STRESS COULD KILL YOU

“Holiday traditions can drive caregivers and challenged people bonkers … To care, and caregiving can put you on a collision course with ‘tradition’. …”
Tradition! Tradition!

"Unfortunately along with joy and happiness, the Christmas season is routinely accompanied by a rise in domestic violence … Forrest Smythers sentenced to life plus eight years for fatally shooting his wife after an argument over Christmas lights … ”
LIFE FOR KILLING WIFE OVER XMAS LIGHTS

Planning to deck the halls with boughs of holly? -- Just don't eat the berries! As few as two berries can cause nausea and vomiting, five berries can cause stupor, and 20 to 30 berries can lead to death. Poinsettias on the other hand are NOT poisonous, though consumption is likely to cause vomiting. … All things considered, vomit bags might make a nice accessory for your vegan guests or pets that prefer to graze on your decorations.

For reasons lost somewhere in the fog of Multiple Sclerosis related cognitive impairment two things can trigger a raving rant by Patti, poinsettias and Velveeta cheese. Throw in short term memory loss and you get a new rant every time Patti sees the poinsettia again. Needless to say … no poinsettias around here.

Actually around here decorations are at more risk than people. Our illuminated Noel candle and toy soldier frequently suffer from ‘shaken plastic illuminated lawn ornament syndrome’ dislodging the lamp inside. In the world of teen autism apparently one greets illuminated ornaments with a frantic variation of a bear hug.

Maybe the Wise Men really were wise that first Christmas, Frankincense for calming, restorative medicinal properties and Myrrh for a strong antiseptic and anti-inflammatory. And then there was gold. Who said money is not an appropriate gift?

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/

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

wheelchair dance

2009-12-14T12:58:00.000-05:00

While visions of sugar-plums dance in everyone’s head this time of year, some special ones work to bring dance, dreams and caring to life.

"One dances in the wheelchair and the other dances near the wheelchair, and spectators marvel at their friendship as well as their moves...."

12 Days of Caring: Girls find the right way to move in wheelchair dance class

"... Katrina Thomas and Kirsten Stewart are 12-year-old best friends from York County who are starting a new dance season in a wheelchair dance class run by Nancy Ehrlich. The class is part of the non-profit PECAN, or Progressive Education of Children in the Arts Network...."

" ... Ehrlich is a lifelong dancer who suffered a spinal injury in 2002. Using her own wheelchair, she started the dance program that is entering its sixth season. ..."

Do not go where the path may lead, go instead where there is no path and leave a trail. -- Ralph Waldo Emerson

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

too busy caregiving for affair with Tiger Woods

2009-12-11T17:20:00.000-05:00

Alas, I confess I have never had an affair with Tiger Woods. Though I suspect this entry may get more hits than those simply entitled caregiving, Multiple Sclerosis, or teen Autism.

Thanks to the National Alliance for Caregiving, AARP and MetLife Foundation:

CAREGIVING IN THE USA, 2009

If the 74 pages do not interest your curiosity they SHOULD and if not now, they WILL.

“More than 3 in 10 US households report that at least one person has served as an unpaid caregiver in the last 12 months, leading to an estimate of 36.5 million households with a caregiver present.”

Even if already a caregiver it gives you an idea how you may be perceived or misperceived.

According to “Caregiving in the USA, 2009”, caregiving lasted on average 4.6 years. Just past my 20th anniversary as a caregiver, obviously I am a horse of a different color. Life long caregiver parents of special needs children who grow up to become special needs adults obviously warrant elite status.

Regardless of distinctions it IS a detailed look into what SHOULD be capturing our attention.

"...the moral test of government is how that government treats those who … are in the shadows of life; the sick, the needy and the handicapped." Hubert H. Humphrey

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

You might be a caregiver if …

2009-11-30T15:49:00.000-05:00

You might be a caregiver if … menthol is your eau de cologne.

Thanksgiving morning began with rubbing Mineral Ice into my shoulder and upper arm muscles and applying a Ben Gay back patch to my lower back. So too would Thanksgiving end, and the next morning begin.

At Patti’s level of Multiple Sclerosis (EDSS 8+) caregiving is physical caregiving. Ironclad in menthol, perhaps even hallucinating on menthol, I was pumped up and ready for my 20th anniversary as a MS caregiver.

Besides the multiple transfers, clothing and Depend changes, and monitoring dysphagia related choking through dinner, Thanksgiving for Patti was a safe, happy, and family filled holiday.

Interestingly I discovered I could take a picture of those ol' family slides projected on a wall and with a little photo editing we have Patti and her brother both now and then.

'Black Friday' is always a travel day for me to and from New Jersey to visit maternal cousins. While I treasure them all, there is one who though so young has so much to teach about the will to live. Less than a handful of years old, he has survived premature birth, chemotherapy, and liver cancer surgery while living with Infantile Myotonic Muscular Dystrophy.

Back to Pennsylvania and sharing our home with living with teen autism, fretting over “no school” seems to dominate the Thanksgiving holidays. Throw in that school is closed Monday for opening day of deer hunting season and “no school” has one 17 year old in the outer limits of high anxiety as he struggles to hold it together until school returns.

There may be no 'beaten path' for navigating the holidays, but if you look there is inspiration! ... and there is always eau de menthol.

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

flu vaccines Multiple Sclerosis

2009-11-28T22:33:00.000-05:00

"The reason why the flu is more difficult and potentially damaging to individuals with MS is three-fold.

First, if individuals with MS get the flu, they must endure the associated aches and pains in addition to their normal MS symptoms.

Second, high fever accompanies the flu, and an elevated temperature may increase MS symptoms, affecting one's overall wellbeing.

And third, the body responds to the flu with an outpouring of gamma interferon, a chemical that increases the risk of an MS exacerbation. For this reason, individuals with MS who catch the flu have a greater chance of experiencing an MS attack within several weeks following their influenza (flu) illness."
Flu Vaccines MSAA The Motivator Fall 2009

NMSS Flu Vaccines—2009-2010 (11/19/2009)

While Patti has already been vaccinated for both seasonal flu and H1N1, living with Multiple Sclerosis demands that family and caregivers keep in mind how damaging the flu can be. Double down your bet and get yourselves vaccinated, our daughter and I have done so.

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

20th anniversary MS caregiver / Thanksgiving

2009-11-23T15:30:00.000-05:00

“It was twenty years ago today,
Sgt. Pepper taught the band to play
They've been going in and out of style
But they're guaranteed to raise a smile.
So may I introduce to you
The act you've known for all these years …”

25 YEARS AGO
Patti had the briefest episode of slurred speech and numbness in her fingers.

“Probable MS?” Patti felt fine, never reoccurred. Damn the torpedoes full speed ahead.

20 YEARS AGO
November 1989 … National Zoo, Washington DC.

Thanksgiving morning, 1989, Patti awoke in a different world unable to walk, barely able to see and talk. Thanksgiving Day would end with her hospitalized with first Multiple Sclerosis exacerbation.

THREE YEARS LATER, 1992,
We were living with Multiple Sclerosis AS A FAMILY. scooter sleigh ride (1:16)

TEN YEARS LATER, 1999

"If you find there the meaning of what happiness is … Then a new life will begin”

FIFTEEN YEARS LATER, 2004

The care facility era dawns

SEVENTEEN YEARS LATER, 2006,

“it poured sweet and clear It was a very good year”

And, as of last Thanksgiving ... we’re still “guaranteed to raise a smile”

Oh yeah, along the spouse caregiver path there was one hernia surgery and my back is sore more than I admit. My first episode of Cluster Headaches occurred that original year, alas my Achilles Heel.

Yet considering that I did not even have a clue as to how I would get through that first overwhelming Thanksgiving, there really are infinite reasons to give thanks!

Thanksgiving wishes to us all, every one!

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

cognitive function multiple sclerosis

2009-11-21T10:10:00.000-05:00

“It’s one of the most sensitive topics among people with MS—we’re talking about how MS affects your mind, about cognitive function …”

“Cognitive changes are thought to affect about half of those who have MS ….”

MS and the mind: The latest research on cognitive function

Reading through the above article in National Multiple Sclerosis Society MOMENTUM magazine, winter ’09-’10, I had mixed feelings. Certainly I was glad to read of 4 pages of current and pending research yet I was baffled as to why the ‘major players’ have been so slow in coming around.

Last winter the Multiple Sclerosis Foundation invited me to write an entry for their MS FOCUS magazine entitled A CAREGIVER’S PERSPECTIVE, MS AND COGNITION
“…We were swamped in physical adaptations, and in the early and mid-1990s, cognitive problems associated with MS were simply not mentioned very often…”

In the NMSS Momentum article under “treating cognitive change” they mention looking at drugs used to treat Alzheimer’s disease. A study of donepezil (Aricept) is recruiting people with all types of MS.

Six years ago Patti’s nurse practitioner suggested trying Aricept. Her neurologist hemmed and hawed about lack of research but acquiesced. Not only has Aricept slowed cognitive progression to the eye of the observer but it has demonstrated through MRIs a slowing of rate of cerebral atrophy.

The frustration with cognitive function is that the person affected is the last to be aware. Family, friends, and medical contacts have to find a way to cross this line. I am not sure that patience is a virtue in fighting this symptom of Multiple Sclerosis.

“Of all the things I've lost, I miss my mind the most” Mark Twain

video: Multiple Sclerosis cognitive challenges (3:23)

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

L’autisme

2009-11-19T20:36:00.000-05:00

In France “autistic people are an excluded group within the excluded”. Or so wrote the Council of Europe in 2004 when France was found to have failed to fulfill its obligations to persons with autism under the European Social Charter.
Council of Europe Uphold Autism-Europe’s Complaint Against France

Is the land of champagne, food, and the city of lights ONLY for the able bodied, able minded?

I found myself sitting in front of my PC with my mouth hanging open the more I read.

“French autistic children and adults are still widely treated as psychotic patients … practices such as the packing of naked non-verbal kids into cold wet sheets …

It is time that the French medical and educational systems came to grips with the reality of today’s autism.”
Outrageous Mishandling of Autistic Children in France

Maybe there is some cultural aspect I am missing but it just seemed to get weirder.

“autism which is colloquially used in French to refer to a stubborn person who does not listen, is a common term of political abuse in France.

Pierre Lellouche, France’s Europe minister recently accused William Hague, the (UK) shadow foreign secretary, of a “bizarre autism” in their discussions.”
Political abuse and the abuse of autism

However just like anywhere, there are parents and organizations in France working as hard as in any country to make the best of possible worlds.

If you are interested in more about autism in France:
Léa pour Samy
sesame autisme
Autisme France

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

teen autism: a hitchhiker’s guide, pt 1

2009-11-18T01:20:00.002-05:00

Over a year ago, I stuck out my thumb and invited one family living with teen autism to share our home.

No, I am not family nor did I have any prior experience living with autism.

Nor am I naïve, for 20 years I have juggled being a Multiple Sclerosis spouse caregiver while basically single parenting an able bodied able minded daughter from 18 months to adult.

So … why should YOU care?

Basically anything comes down to 'how and how much does it effect me'!

So, let’s start there.

AUTISM IS IN EVERY COMMUNITY with an increasing prevalence of 1 in every 150 children (at least 1 child for every two school buses full of kids)

AUTISM HAS "HIGH COST TO U.S. SOCIETY".
“…$3.2 million to take care of an autistic person over his or her lifetime." (Harvard 2006)

(crystal ball of increasing prevalence)
$200-400 billion estimated annual cost in ten years to care for all people with Autism. (Autism Society 2009)

YOUR ... schools, taxes, community services and safety nets are all affected.

Before getting yourself worked up, consider "COST TO PARENTS"
$43,000 annually in the teen years between out of pocket costs and lost income. (Globe and Mail 2007) Non-medical care costs soar as a person with autism ages.

While this hitchhiker appreciates “studies”, he gets apprehensive when “costs” are associated with human beings.

Autism is a spectrum diagnosis so encompassing it seems an ‘undefinition’. Debatable as to causes, treatments, even whether increase is about modern threats or better diagnosis it is confusing to grasp.

In this story, I would define it as extremely challenged communication and social behavior dwarfed by hyperactivity. Yet hyperactivity is ‘medically’ labeled secondary (comorbid condition). IMHO, when someone the size of a 17 yr old spends so much of his time yelling and trying to leap out of his own skin, this hitchhiker wonders if labels are obstructing the view of the elephant in the room.

To be sure, there are and will be many views and much interpretation when the person at the center of it all cannot communicate.

To be continued …

(Author’s note: Approx. 350 words are my self-imposed cap on journal entries.)

Related: living with teen autism

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

holiday kitsch

2009-11-14T01:16:00.000-05:00

Living with Multiple Sclerosis and spouse caregiving is not always serious. There are smiles and there is laughter.

Martha Stewart, eat your heart out! Give me kitsch and tacky any day!!!

"It's beginning to look a lot like Christmas
Ev'rywhere you go ..."

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

d-i-v-o-r-c-e multiple sclerosis

2009-11-13T15:38:00.000-05:00

Men as spouse caregivers seem to be the media piñata of the week, specifically for spouses diagnosed with Multiple Sclerosis or Cancer.

Feelin' Sick, Ladies? Better Hog-Tie Your Man
“I've read a lot of depressing news about the state of marriage recently, but none more dismal than a new study …”

'In sickness and in health' has different odds for women than for men
“Many people have assumed that men are less likely than women to stick by a seriously ill spouse. That assumption might not say much for men. Yet it appears to be true. …”

Men leave: Separation and divorce far more common when the wife is the patient
“A woman is six times more likely to be separated or divorced soon after a diagnosis of cancer or multiple sclerosis than if a man in the relationship is the patient …”

Thanksgiving morning will mark my 20th Anniversary as a Multiple Sclerosis spouse caregiver. This past July was our 24th wedding anniversary. In December will begin my 59th year as a male.

I am quite sure I am not the only one.

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

caregiver mortality: what if?

2009-11-12T14:29:00.000-05:00

Statistics clutter the internet. 30% of caregivers die before those they are caring for. Spouse Caregivers are at 63% greater risk of death than non-caregivers. Family caregivers have been shown to age prematurely, as much as 10 years off a life.

More important … what about the surviving person of need?

Successful caregiving situations are as unique as the people involved. Loss of a caregiver is no statistic it is the unraveling of the fabric of living and caring.

In our story, we learned you have to plan for the worst. Of course hope, but plan while you can. Talk about when, how, what, why and who will step in.

We began to talk about and develop a ‘best of possible’ plan for Patti.

Homecare was never an Alamo for Patti. Patti did not want our daughter to have to sacrifice her life as her home caregiver. Past experiments with home care helpers had always ended poorly. Other family or friend options were not 24/7 dependable.

We began to look at care facility options from independent living communities through nursing homes.

Assisted living seemed ideal but after visiting we learned it was not an option for Patti’s level of Multiple Sclerosis progression.

To replace my level of home caregiving necessitated a 24/7 nursing home level facility.

We kept discovering there was so much to compare and consider. God help families that have to do this under immediate need conditions.

A family caregiver is an economic godsend. Paying to replace their services is astronomical.

Financial and Estate Planning became a MUST.

Before cognition became an issue of competency we met with a lawyer and Patti assigned me durable general power of attorney. We additionally established secondary people so transition would be seamless should something suddenly happen to me.

Financial planning, special needs trusts, etc are not only critical but can ONLY be done in advance.

No one can predict, but anyone can plan.

Do you know how your story would unfold, if … ?

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

cluster headaches: physicians change headaches immortal

2009-11-10T01:49:00.000-05:00

Preparing for my recent yearly physical I needed to review my notes and records from my Spring episode of Cluster Headaches.

During an episode (when not actually writhing through a cluster headache) I find myself meticulously recording times, duration, intensity, medications, frankly just about anything looking for patterns or clues.

The older you get the more often you find yourself looking at a new face instead of your previous medical guru. When cluster headaches ARE your medical history for 20 years this is never a good thing.

My first question was “What do you know about cluster headaches?” The answer was so scarily uniformed, the rest of the physical blurred.

To decades ago when I first entered these circles of hell, information was nowhere to be found. Of course a large part of that had to do with misdiagnosis.

Years were wasted with misdiagnosis and treatment for sinus headaches, TMJ, allergies, and too much doubt while I screamed into a pillow in our cellar trying not to wake or worry Patti struggling with MS and our sleeping daughter.

I was even told that people in pain sometimes exaggerate their pain. Tolerance varies between people. WTF!!!

Finally a change in insurance carriers necessitated a change in primary care physician and I stumbled into not only a physician who believed my descriptions of pain but was willing to work with me to find a solution. Together we discovered cluster headaches.

Zomig finally appeared in 1997. As far as I am concerned Cluster Headache history should be divided by this date, BZ / AZ.

In retrospect Zomig was slow to take affect but who cared the point was finally something could tame the beast eating my brains.

Lost in 1997, I was interrupted by “Mr. Leer, did you hear me?” … “No, I was having a daymare!”

Why doesn't medical knowledge seem to improve? Why do people suffer needlessly? Next patient …

Time to search for another medical guru!

Related entries:

brain writhing on a corkscrew

aka suicide headaches

cluster headaches - my Achilles Heel

cluster headaches continued

cluster headaches June 2005

cluster headaches December 2004

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

musings: Patrick Ponders ...

Voting, cognition, and Multiple Sclerosis

2009-11-04T14:39:00.000-05:00

Oh, it is never boring voting with Patti. Her Multiple Sclerosis symptoms: legally blind, short term memory loss, cognitive impairment, and inability to modulate her voice volume can turn whispered assistance into … what I call ballot envy. Certainly “What the f#ck is a prothonotary?” brought chuckles from way too many other voters.

coroner (vote for one)
Patti: “It’s a stupid idea.”
Patrick: “Stupid idea is not a choice, Democrat or Republican”
Patti: “Republican”
Patrick: “Why?”
Patti: (laughing) “They are probably better with dead people.”

Now way too many other voters are enjoying lingering and I am feeling like the straight man in a comedy routine.

Pennsylvania has no State Constitutional disqualification provision for citizens with cognitive or mental disabilities with or without assistance.

Sadly this is not true for citizens in half the United States. You can view your own State Laws Affecting the Voting Rights of People with Mental Disabilities

The National Network for Election Reform reports that beyond legal obstacles too often disabled voters encounter voting challenges, voting tests, and denial of effective assistance.

“Friends and fellow citizens: I stand before you tonight under indictment for the alleged crime of having voted.” Susan B Anthony

Poll workers often deny individuals the right to get assistance from a person of their choice and insist that an election worker(s) must assist the voter - so TRUE and our most uproarious and entertaining election memory. Voting & MS

Patti wants to vote at a polling station like everyone else, no absentee ballot alternative for her.

Pushing Patti toward the door we were surrounded by a dozen last minute campaign pitches and offered handshakes. One candidate simply opened the door for us, remarking “I thought you two might appreciate a hand.” … we thanked him with our two votes for school board.

Whether voting is a right, privilege, or responsibility or whether federal, state, or local it is what we do in spite of obstacles and enjoy!

By the way, Republican won Coroner, and door opener won School Board, so much for political science.

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

disability history

2009-11-02T08:54:00.000-05:00

History enriches people and nations. Disability also has history! Considering the obstacles, it is an extraordinary history!

It is no metaphor to say that today we are standing on the shoulders of giants.

181 years ago Rev. Gallaudet demonstrated education for all when the US House of Representatives adjourned for an “exhibition of deaf and dumb teachers and pupils”. Reading President John Quincy Adams' memoirs of that day, including questioning of students by Vice President John C. Calhoun on the “differences between power and right” is frankly captivating.

119 years ago consider assistive technology:

101 years ago the sound of a different drummer:

Disability history is told through personal letters, and articles as well as visual history such as photographs and lithographs. Two on-line friendly resources I have found are:

Disability History Museum Library

Museum of disABILITY History

70 years ago was the darkest chapter of disability history. NEVER FORGET Aktion T4: the Nazi extermination of 275,000 disabled adults and children deemed “unfit to live”. Additionally the “Law for the Prevention of Hereditarily Diseased Offspring” forced the sterilization of 360,000 people.

12 years ago the President Franklin Roosevelt Memorial was dedicated in Washington DC amid disability controversy. FDR’s reliance on a wheelchair was not publicized during his life, as there was a stigma of weakness and instability associated with any disability.

8 years ago, an additional statue funded by the National Organization on Disability was placed near the memorial entrance showing FDR seated in a wheelchair much like the one he actually used. … “It has awakened visitor's curiosity to learn more about President Franklin Roosevelt's disability and his great contributions to the country. A great majority of the visitors that come to the Memorial spend considerable time where the statue resides,” writes National Park Service Superintendent Arnold Goldstein.

"If you would understand anything, observe its beginning and its development." Aristotle

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

musings: Patrick Ponders ...

monster truck wheelchair shopping cart

2009-08-07T13:03:00.010-04:00

Pushing a 'monster truck' wheelchair shopping cart through Walmart is what you make of it.

Flare ups of Patti’s Multiple Sclerosis and/or summer weather can take the usual enthusiasm out of driving electric carts for her. As a spouse caregiver, trying to maneuver those electric beasts from the side or rear is definitely NOT fun, so we opted to try their ADCO "Rover" (combo wheel chair and shopping cart).

Kind of cool the way it works, opening and closing like a shell. It’s pictured in front of vehicle tires for perspective. Pushing around this ‘big dawg’ felt like pushing around an adult Tonka Toy.

Finished with our toiletry shopping we decided to take a nostalgic roll through the toy department, pushing “try me” buttons. Well, until Patti decided to respond to Elmo’s invitation to sing a long with “Who the hell cares you weird little thing!” We both dissolved into laughter and to giggles from kids and parental stares we escaped to an older toy aisle.

An aisle dominated by Barbie and Shrek figures only made the laughter worse as somehow the conversation shifted to whether Barbie and Shrek ever “did it”. This image alone may keep me from sleeping for a week. Anyway time to roll out before we were thrown out for having too much fun.

Successfully transferring Patti back to her own wheelchair at the entrance/exit to Walmart, I was accosted by the cart herder with “Dude! You are one strong dude!”

At my age, ANYTIME a youngen calls me dude not once but twice this is the start of a good conversation. He explained he pumps iron and was most impressed with the way I transferred Patti using only neck, shoulder, and arm muscles. “You do everything wrong but it works, awesome!”

I am trying to remember the last time we had so much fun, laughed so hard, complimented, and spent so little money. Hey! It’s Walmart admission is free.

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

Safety nets, heroes, and heart

2009-10-29T12:24:00.000-04:00

Safety nets are unraveling.

GOVERNMENT

“the consequences are severe in many cases — for residents as well as the economy. … budget difficulties have led at least 41 states to reduce services to their residents, including their most vulnerable families and individuals. An Update on State Budget Cuts

PRIVATE

72% of Americans say they cut back on time spent volunteering, participating in groups, and doing other civic activities in the past year while the economy was free-falling. America ’s Civic Health Index

We NEED Heroes …

Biking 150 miles for a cause -- in a dress and heels

We need HEART …

“there is a silver lining, a ray of hope, a demonstration of America’s good heart … more personal forms of participation that often go unnoticed. … every bit as critical as activities such as charity walks and volunteering.

Interestingly, people with the least means are giving the most. In the past year:

50% gave food or money to someone in need who is not a relative
43% gave food or money to someone in need who is a relative
17% allowed a relative to live in their home or on their property
11% allowed a non-relative to live in their home or on their property

Yes, the recession affects everyone. However those most vulnerable are affected exponentially.

What’s in your heart?

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

musings: Patrick Ponders ...

What if I'm not the legal caretaker?

2009-10-18T01:41:00.001-04:00

“Police say 53-year-old Rosemary McCurdy died Dec. 26 after suffering facial burns from a "flash fire." The woman had Multiple Sclerosis and had been bedridden for five years.” Mom's cigarette ignites oxygen supply; son charged

“Police said the woman, who suffered from Multiple Sclerosis, … was laying in her own filth and had bed sores and was dehydrated. Police said it took five days for Victor McCurdy, 22, to finally take his mother to the hospital … Police said that through his negligence, the woman died. He is also charged with involuntary manslaughter.” Greensburg Man Charged With Negligence In Mom's Death

"McCurdy told investigators that he wanted to take his mother to the hospital the day she was burned, but she refused. … McCurdy added that his mother hated hospitals. …
     … A friend who was caring for Mrs. McCurdy stopped about two years ago … and blamed Victor's drug use as the reason … Victor McCurdy has a history of illegal drug use, according to court records.
     During his arraignment, McCurdy questioned the charges filed against him.
     "What if I'm not the legal caretaker of the person?" he asked Greensburg District Judge James Albert….”
Greensburg son charged with neglect in mom's death

Many more news stories like this and it could be time to consider homecare dangerous for your health.

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

musings: Patrick Ponders ...

caregiving: an evening at the races

2008-07-31T11:43:00.001-04:00

Hollywood Casino at Penn National Race Course is surprisingly not wheelchair friendly.

Arriving I followed signs to “accessible van parking”. Spaces designed with adjacent area blocked out for ramps or lifts to deploy. However, every space was occupied by a regular passenger car. … Instead we cruised the parking garage looking for an end space on an aisle to deploy the ramp.

Doors from outside to inside whether off the parking garage or to the casino display a wheelchair access sign but we could find NO controls. An unattended person in a wheelchair would be hard pressed to open and enter outward swinging doors.

Beware! There is a crisis in South Central Pennsylvania with people moving furniture. Every chair in front of a slot machine was bolted to the floor. Management must assume people only use wheelchairs or scooters for convenience not necessity.

Yes, you can find a manager who can direct you to a security officer who can contact a security supervisor who can contact a maintenance engineer who can unbolt and remove the fixed chair to allow wheelchair access. That took 20 minutes on a non-busy Wednesday evening.

I believe I dead-lifted transferred Patti half a dozen times in and out of her wheelchair to a bolted chair to check out machines before choosing one. Everything from color contrast to height or slope of machine face can affect Patti's MS related visual challenges.

Pictured are Patti, her Mom, and top of her Dad's head enjoying the ‘chosen’ slot machine.

A highlight was Penn National Race Course adjacent to the Hollywood Casino. Literally roll out the casino door and you are at the track.

Patti’s wheelchair could basically park at the rail. Between proximity and the size of a horse and rider it was visually impaired friendly entertainment.

Washed by an earlier summer thunderstorm the evening could not have been more beautiful.

Never confuse accessibility challenges with a good or bad time. Caregivers, family, and friends can usually overcome obstacles.

Good times are CREATED from time spent together.

Caregivingly Yours, J Patrick Leer

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

Tags: caregiving, carer, spouse caregiver, Multiple Sclerosis, wheelchair, accessibility, Hollywood Casino, Penn National Race Course, Harrisburg, Pennsylvania

Speech & Voice Multiple Sclerosis

2009-10-26T17:50:00.000-04:00

Multiple Sclerosis speech problems impact social functioning, no ifs ands or buts.

While pushing a laughing Patti in her wheelchair through our grocery store, her Multiple Sclerosis related Speech became stuck like a stylus on an old vinyl record “You’re a …” “You’re a …” “You’re a …”

Then in a volcanic explosion of decibels she shouts, “You’re a goober!” before dissolving into laughter.

Now a neurologist would charge you big bucks to tell you which Greek words apply above, dysarthrias, dysphasia, aphasia, dysphonia, or dysphagia.

I simply thanked Patti on the part of myself and everyone within hearing range.

What exactly is a goober? “How the f@ck should I know?” Patti offered.

MS Speech problems swing both ways, frustrating for the speaker, confusing for the listener.

MS Speech problems are all about short circuiting from myelin damage. Fatigue can affect and intermittent nature can make everyone nuts

People diagnosed with MS do not wear signs so ‘inquiring minds’ react from speculation to assumption as to why speech is challenged.

Listener assumptions can be as much of the problem as the speech challenges.

Slurred speech was the first speech symptom to appear in our story. Patti was ‘encouraged’ to go home from work one day decades ago in the dawn of living with Multiple Sclerosis as coworkers ‘assumed’ she was drunk.

Scanning speech / Long Pauses Do not ‘assume’ that someone has trouble understanding what you are saying or cannot find ‘the words’. This is about challenges with the physical process of speech.

Volume is particularly challenging for Patti. Appropriate levels can get interesting to say the least. (a church moment)

MS related Emotional Lability plus Pseudobulbar Affect equals excessive emotional response plus anything might be said in any given situation. Patti for example becomes a ‘laugher’ at funerals.

Suggestions from two decades experience:

Do not assume!
Patience is support.
Remember speaking can be frustrating and tiring.
Be honest, not condescending, when you really have not understood something.
Check ‘your’ self-conscious attitude at the door.

Urban Dictionary defines goober as a term of endearment, a kindhearted goofball. … I’m honored!

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

musings: Patrick Ponders ...

NEEDED: caring communities

2009-10-22T13:29:00.004-04:00

Living with Multiple Sclerosis and MS caregiving can get overwhelming.

In my last entry (What if I’m not the legal caretaker?) one family’s story went tragically wrong.

Richie a MS caregiver blogging from the Netherlands, “A Place To Scream” commented

“sadly I can see how an individual gets overwhelmed … it is a hard life as a care giver and is more than one sad boy could manage- we need caring communities not over burdened individuals.”

Richie, you must have some powerful international mojo because yesterday I received a call from National Multiple Sclerosis Society - Central Pennsylvania Chapter about arranging a day of caring for Patti. Volunteers come to the home for a day of yard work, chores, etc.

“What a difference a day makes” program was debuted a month ago assisting Jay Megonnell in living with MS. United Way of the Capital Region-“Day Of Caring”

With Patti’s MS progression requiring residence in 24/7 assisted care this program is not for us. Yet it could be a godsend for so many living with MS and their caregivers.

If reading this through Patriot News bloglink or living in Central Pennsylvania Chapter area, call 1-800-227-2108, ask for Susan for information.

Pondering ‘caring communities’ and tinkering with Google Analytics I was stunned at the past month's readership of Caregivingly Yours.

Wow, I can still remember trying to create my first entry and wondering if anyone would even read or care.

I believe there are more caring people out there than it may seem.

'How to help' can be more of an obstacle than 'why'.

Related previous entries:

What can friends do to help someone who is a caregiver? (Pt 1)

What can friends do to help someone who is a caregiver? (Pt 2)

What can friends do to help someone who is a caregiver? (Pt 3)

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

musings: Patrick Ponders ...

what can friends do to help someone who is a caregiver (Pt 4)

2008-08-09T12:32:00.003-04:00

Part 4 ... what can friends do to help someone who is a caregiver?

#7 Many caregivers find themselves longing for companionship with others who are going through the same situation.

Some caregivers, well actually two that I know of, were pondering and discussing taking this thought into uncharted territory.

Can two caregivers of two different conditions (Multiple Sclerosis and Autism) supporting each other equal something better?

32 combined years of experiences with family caregiving is more than a resource, it IS a force.

Family caregiving traditionally has no safety net. An in house back-up is revolutionary.

You never retire from caregiving. … “Well, pilgrim, what are ya gonna do?” Why not kick the box open and pioneer a new trail?

Caregiving is life on the economic brink. Shared expenses could be a step back from that edge.

Splitting chores and errands could be the alchemy to creating more time.

Being able to wind down and wrap up each day’s unique life of caregiving with another caregiver is inconceivable, or is it?

Readers of ‘Caregivingly Yours’ met Jennifer and Tyler in “caregiving: fortunately smiles speak”, additional visits have yielded more success than challenges.

Outings with our unique posse diffuse the impact of disability. Is there strength in numbers?

Visiting our local high school, Jennifer left feeling it is as good if not better for Tyler’s autism related specific needs.

Fate dealt the cards this past winter when their home in Massachusetts changed from years of stability to unknown. We have the extra bedrooms and bathrooms to begin the journey.

Patti’s memory and attention span challenges discussion. When she does focus, her awareness of the demands and toll of caregiving on caregivers is sensitive and concerned. She has enjoyed the visits and companionship. Important to her, this should create more time for outings both collectively and separately.

Like many 20 yr olds Megan’s world revolves around her and lies beyond. Even though I have repeatedly offered her veto over the idea, she has been a solid supporter since earliest discussions.

So in a week, we again open our home and in a sense we all jump off that proverbial cliff together.

Butch Cassidy: Then you jump first.

Sundance Kid: No!

Butch Cassidy: What's the matter with you?

Sundance Kid: I can't swim.

Butch Cassidy: Are you crazy? The fall will probably kill you.

Caregivingly Yours, J Patrick Leer
website: www.CaregivinglyYours.com

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

Tags: caregiving, carer, spouse caregiver, Multiple Sclerosis, Autism, Caregivingly Yours, friends, caregiver

what can friends do to help someone who is a caregiver (Pt 3)

2008-08-06T15:26:00.003-04:00

Part 3

#5 Help the caregiver get away from their everyday responsibilities. Provide opportunities for play.

I would reverse this; help the caregiver “with” everyday responsibilities. Companionship for errands or outings is invaluable.

Having an extra set of hands along revolutionizes outings. Unable to leave Patti unattended, I can never drop her off at the entrance to anywhere and park.

In the early years there were no ‘family restrooms. My presence in a women’s room either to accompany our young daughter or to assist Patti seemed to unnerve other women. Come on now ladies, unlike a men’s room all the stalls have doors.

Ventures into women’s clothing departments both as a spouse caregiver and a single parent of a daughter were travel to another galaxy. Men’s clothing is a function of width and length, a female translator would have been soooo welcomed.

More often than not caregiving is opposite sex. In our story not only was caregiving opposite sex but so was basically single parenting. My first attempt at buying feminine care products could have been a candid camera skit. <grin>

I simply approached women shopping in the feminine care aisle, “Excuse me, do your prefer a tampon or a pad?” or “Why does one want ‘wings’ on these pads?” and so on. Shoppers stared at me dumfounded as if I was an alien and hurried from the immediate vicinity. <grin> …

#6 Help keep humor in the lives of the caregiver and receiver.

Yes, humor above all! However even just sharing your life is appreciated. We live vicariously through others. <grin>

Fortunately humor often finds me. Not so long ago, I was in a check out line holding a package of feminine care pads ‘with wings’ when an unusually heavy gentleman notices my package and conversationally though loudly remarks, “Hemorrhoids? Huh? ‘Wings’ are the only way to go! That’s what I use.”

Even though the image is forever scared in my mind, you can rest assured that conversation kept humor in our lives for weeks. <grin>

(Oops! Approaching that 350 word cap on entries … to be continued … only one to go!)

Caregivingly Yours, J Patrick Leer
website: www.CaregivinglyYours.com

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

Tags: caregiving, carer, spouse caregiver, Multiple Sclerosis, Caregivingly Yours, friends, caregiver