Multiple Sklerose

Germany not only ranks 4th in readership of this journal but is part of our story of living with Multiple Sclerosis (Multiple Sklerose).

In the early 1990’s Patti was treated at the Nieper Clinic in Hannover, Germany.

Alternative vs traditional treatments for Multiple Sclerosis are always debatable. Yet the only point of view that mattered was that Patti left the US in a wheelchair and returned from Germany walking.

Nieper’s Calcium-EAP treatment had no better or worse results than conventional treatments, MS progressed.

Later in the 1990’s it was a pioneering trial in Germany of Avonex for progressive type Multiple Sclerosis that led to Patti’s approval by her medical insurance to try Avonex.

Eventually no better or worse than anything else, conventional or alternative, medical insurance pulled the plug on Avonex payments as MS progressed.

Previously I’ve mentioned a German company, cadKat, that ‘empowers’ accessibility with their EuroTrax balloon wheels.

In the bigger picture … While we are suddenly yelling at each other over health care reform, Germany has lived health care reform on an epic scale beginning with German Unity in 1990. Their answers may not be ours, but they have done a lot more than talk. Spending on health care consumes 10% of Germany’s gross domestic product contrasted to 16% in the US.

From the Philadelphia Inquirer:

German system values health care as a right

“I was in an American hospital's emergency room only once, … the first thing asked by the hospital staff wasn't how he was doing. It was how he intended to pay.

For me, as a German, this was a culture shock.”

Multiple Sclerosis is a world wide challenge and no one country has a lock on solutions. Hope is always about looking outside your box.

For more information on Multiple Sclerosis in Germany: Deutsche Multiple Sklerose Gesellschaft.

Also …

Meine Familie lebte in die Amerikanische Siedlung von Bad Vilbel, Deutschland, zwischen 1963 bis 1965. (My family lived in an ‘American neighborhood’ of Bad Vilbel, Germany, between 1963 through 1965.)

In this technology age, to reminisce is only a click away.

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

a MS caregivng whatdunit

Mix intermittent pain with Multiple Sclerosis related memory loss and mental confusion and you get a genuine whodunit or better yet, whatdunit.

Two weekends ago, a week in the life of caregiving, I mentioned intermittent pain in Patti’s left arm.

Examination of the arm by nursing staff and physical therapist found no range of motion problems nor did Patti report any pain.

As an advocate you must do more than monitor a ‘whatdunit’. You must inject yourself IN the mystery.

Whenever I put her jacket on or off, I did so at the nurses’ station so any and all ‘intermittent’ incidents of pain were witnessed and logged.

When Patti’s physician visited she attempted to replicate the problem with no success. Fortunately, there was a file of witnessed episodes, and X-rays were ordered.

No fractures were found, though the x-ray analysis somewhat distractingly reported evidence of osteoporosis.

When a patient is unable to direct their own medical care the ‘advocate’ must help keep the focus.

Patti was next referred to an orthopedic specialist.

To ensure communication I transported and accompanied Patti to her appointment. Her examination revealed nothing nor did Patti complain of any pain.

Before tearing my hair out, I suggested a demonstration … Patti yelped and grabbed her arm as soon as I slid on the left arm of her jacket.

Re-focusing his examination on where she grabbed her arm …

Ortho: “Patti, let me know if this hurts?”
Patti: (yelp) “If you do that again, I am going to kick your f#@king ass!”
Ortho: “in other words, yes”

… he found a tender “extension mass” in her left elbow.

Diagnosis = tendonitis.

Extension injuries, we learned, are not uncommon to elbows and wrists for people in wheelchairs.

prescribed:
1) tennis elbow strap
2) intermittent analgesics
3) physical therapy

As for osteoporosis, he did NOT agree with the portable x-ray analysis.

As for Patti all she wanted after that appointment was a ciggie, ‘analgesics’, and a mid-day nap.

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

Multiple Sclerosis and Long Term Care: SAFETY

Knowing what I know now, what do I consider the most important factors about Multiple Sclerosis patients in long term care facilities?

Then and now, SAFETY was and is a major concern. Multiple Sclerosis progression can leave one incapable of self-preservation.

Unlike any other kind of building there just is NO WAY for movement and evacuation of everyone from a medical facility. It is more about defending and protecting until help arrives.

It is all about staff training, on-site fire protection, compartmentation, and as a last resort - exiting strategy.

Ask questions! Fire is the most obvious threat but in some areas nature may have more potential from flooding to tornados.

When we started looking, we ONLY looked at one story facilities. This is not to say that one type of building is more or less safe. What I am saying is that you must determine and find a comfort level in their safety plan and training.

A non-ambulatory person, or someone needing assistance, whether physical or mechanical, to get out of bed is not going to hop up and exit the building when fire alarms go off.

Monday night following an outing, I found myself getting Patti ready for bed when a fire drill training exercise began.

As always I was mesmerized as every staff member in the building moved in synchronized choreography to their positions and roles. Considering that staffing changes between shifts and days of the week, this is a testimony to solid training and staff paying attention to their safety assignments on any given shift or unit.

Additionally reassuring is the knowledge that one fire station is less than a mile away with two more less than two miles away.

It is understandable after a lifetime of school fire drills or ‘duck and cover’ atomic attack exercises to view safety drills a bit lackadaisically. However, Hurricane Katrina forced too many medical facilities to make God’s choices.

When considering long term care, ask until you ‘understand’ their safety plan. Are you comfortable? This is not about codes, you are asking about the safety of a loved one incapable of self-preservation.

Previous related entries:
Multiple Sclerosis and Long Term Care: Proximity

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

a week in the life of caregiving

Last couple evenings Patti has reacted as if her left arm was hit with a lightning bolt of pain when helping her put her jacket on or off. Between her yelling and flailing her arm about, I at first thought something was in the sleeve. Finding no snake, bee, or object of any kind I was baffled.

Examination of the arm by nursing staff and physical therapist reported no pain by Patti. Nor has Patti complained of any pain at any time, except when a jacket sleeve is pulled over the left arm.

Living with Multiple Sclerosis will move up the medical chain on Monday with physician and more testing.

Driving home most of my brain was absorbed pondering Patti’s arm but a part noticed yellow ribbons waving on lamp posts and telephone polls in Carlisle.

Googling, I discovered the town's National Guard unit had returned from combat. Why did I not know this? In only one week I had already misplaced the common purpose and resolve of September 11th.

Walking to our van with a milk shake for Patti, a car full of teenage girls slows, windows roll down and they yell, “Bruster's is for loosers!” before speeding off.

Patti: What the hell was that about?
Patrick: You tell me, I was never a teenage girl.

Across the world a young man with ties to the same community sacrifices his life in the war against terrorism.

Sgt. Andrew H. McConnell..Rest in Peace, Loved and Never Forgotten

"Those who say that we're in a time when there are no heroes, they just don't know where to look." Ronald Reagan

Picking Patti up for her 54th birthday celebration, I was perplexed discovering her wearing her jacket without any report of pain.

Later preparing her for bed, I helped her remove the jacket. She let out a war whoop of pain. I reacted with a loud “YES”!!!  This triggered her Halloween skull to moaning and shaking, which in turn knocked over a screaming audio birthday card which only got the skull moaning again.

Ever tried to transfer a hysterically laughing birthday girl into bed?

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

Eight Septembers have come and gone

"Eight Septembers have come and gone. Nearly 3,000 days have passed -- almost one for each of those taken from us. But no turning of the seasons can diminish the pain and the loss of that day. …

We remember with reverence the lives we lost. … we recall the beauty and meaning of their lives; men and women and children of every color and every creed, from across our nation and from more than 100 others. They were innocent. Harming no one, they went about their daily lives. Gone in a horrible instant, they now "dwell in the House of the Lord forever."

We honor all those who gave their lives so that others might live, and all the survivors who battled burns and wounds and helped each other rebuild their lives; men and women who gave life to that most simple of rules: I am my brother's keeper; I am my sister's keeper.

Scripture teaches us a hard truth. The mountains may fall and the earth may give way; the flesh and the heart may fail. But after all our suffering, God and grace will "restore you and make you strong, firm and steadfast." So it is -- so it has been for these families. So it must be for our nation.

Let us renew our resolve against those who perpetrated this barbaric act and who plot against us still. In defense of our nation we will never waver; in pursuit of al Qaeda and its extremist allies, we will never falter.

Most of all, on a day when others sought to sap our confidence, let us renew our common purpose. Let us remember how we came together as one nation, as one people, as Americans, united not only in our grief, but in our resolve to stand with one another, to stand up for the country we all love. …"

Excerpts from President Barack Obama's Sept. 11, 2009 address at the Pentagon Memorial

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

"Sauce Boss" nourishes Kipona

Welcome to KIPONA, Harrisburg’s Labor Day Weekend festival along the Susquehanna River.

While I drove to pick Patti up from her care facility, multiple aides using a lift got her changed, dressed, and ready for an outing. Monday's weather was ideal for Multiple Sclerosis, partly sunny and 74° F (23° C).

Parking for our wheelchair rampvan can get challenging so I headed for the "accessible" parking lots on City Island, right in the middle of 13th Annual Native American Pow Wow.

Most of our outing was paved, though walks and streets are frequently criss crossed with cables and cords.  

With an estimated attendance of 350,000 over all three days, it is too crowded for Patti's scooter, so all in all it was about 2 miles of pushing Patti for me.

First stop bracelet shopping at the Pow Wow vendors. Then we grazed our way (chicken on a stick, pumpkin funnel cake) up Front Street to catch a performance by Bill "Sauce Boss" Wharton.

While Jimmy Buffett sings about the Sauce Boss in "I Will Play for Gumbo": 

"The Sauce Boss does his cooking on stage

Stirring and a' singing for his nightly wage
Sweating and a' fretting from his head to his toe

Playing and buffetting with the gumbo"

you really have to see to believe!

Mixing Florida Slide Guitar Blues with a cooking demonstration of his own gumbo recipe … the Sauce Boss not only entertains but at the end of his performance, everybody eats!

Pushing Patti down close to the stage so she could see better, I spent more time spinning her wheelchair around because the Sauce Boss is every where, on stage then in the audience and back again.

Running around imitating a monkey while performing “She’s A Monkey” he stopped by Patti’s Mom to pick through her hair.

Between paying gigs, the Sauce Boss performs for and feeds those in need at homeless and disaster shelters, “We play for people who really need a good show and a good bowl of gumbo." For more information check out Planet Gumbo.

Finishing our bowl of delicious gumbo we headed back to the van. With darkness settling in, the lights along River Front Park and the bridge to City Island provided an enchanted close to our Labor Day outing.

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

Bubba Ho-Tep

Patti laughs so hard I have to hit the pause button before her Multiple Sclerosis related dysphagia triggers one of those “I know I am not choking but it sure feels like it” moments.

What are we watching? A movie about a nursing home!

Bubba Ho-tep (2002) comedy/horror. The short and quick of it: Elvis (Bruce Campbell) and JFK (Ossie Davis) are both alive and in a nursing home where they battle a soul sucking ancient Egyptian Mummy.

Forget poignant or sappy this story is so off the wall it is just what the doctor ordered – laughter.

Elvis: No offense, Jack, but President Kennedy was a white man.
JFK: They dyed me this color! That's how clever they are!

Living in a care facility for 5 years now due to MS progression maybe Patti finds more “insider” humor in it than most of us, who knows? One small advantage to her memory loss is that watching it is always fresh and full of laughs.

Elvis: Ask not what your rest home can do for you. Ask what you can do for your rest home.
JFK: Hey, you're copying my best lines!
Elvis: Then let me paraphrase one of my own. Let's take care of business.

A Caregivingly Yours ‘shout out’ to Bubba Ho-tep

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

How to repair wheelchair hand rims

Controlling health care spending begins one person at a time here at Po’ Patrick’s Wheelchair Repair Shoppe.

Problem: Rubberized coating on Patti’s Quickie LXI Custom wheelchair hand rims was beginning to crackle and peel after five years.

Internet searches and telephone calls revealed a range of repair and or replacement options from over $500 to a low of $77 + shipping and handling.

Po’ Patrick’s Wheelchair Repair Shoppe solution cost a total of $10.66: buy one (1) 4.5 oz can Goof Off @ $3.98, one (1) 11 oz can Performix Plasti Dip spray @ $5.98 plus Pennsylvania sales tax.

Cut off the aging rubberized coating with a pair of kitchen scissors.

Remove the hand rims with a screwdriver and clean with Goof Off.

Hang hand rims from ‘something’ and spray with rubber coating as directed. (For example, I used our backyard birdfeeder.)

Less than an hour of work for you and a couple hours for the hand rims to just hang out and dry.

Reattach the hand rims with a screwdriver and you are done.

No, the result is not rubberized tubing which neither Patti nor I could remember why it was there in the first place. However the result is a spanking-new, non-slip and comfortable surface for her hand rims.
---------------

*****UPDATED 9/17: For unknown reasons, Performix Plasti Dip spray rubber coating has begun to tear and nick where Patti's hand rims bump into surfaces such as door jams, etc. ... I removed new rubber coating, it was not difficult to peel off. Hand rims are now just base metal until I work out the kinks in this idea.


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

healthcare debate Multiple Sclerosis

“I know someone who has Multiple Sclerosis!” Likely not John and Jane Doe, more likely “I know someone who knows someone who knows …”

Approximately 400,000 people in the US are diagnosed with MS, a prevalence rate of 1 in 700. … Numbers can blur so let’s try to conjure that up as a visual.

Take 9 US football fields and place them in a line end to end. Start positioning people side by side an arm’s length apart in a line across those fields. Once our line of people stretches across all 9 fields we will have 700 people. ONE of them will likely have Multiple Sclerosis.

Prevalence too often invites “what does this have to do with me?” in our current national debate over health care reform.

I worry that chronic illness in general is being painted in a bull’s-eye? CDC reports “people with chronic diseases account for more than 75% of the nation’s $2 trillion medical care costs.” NIH “estimates place the annual cost of MS in the United States in the billions of dollars.”

For those living with any chronic health issue this is nothing new. A national reform of health care was LONG overdue.

11 years ago Duke University reported MS costly to the “individual, health care system and society” with a “conservative estimate” of the national annual cost of Multiple Sclerosis at $6.8 billion.” … Of course in 1998, we the people and our elected representatives were obsessed with the Clinton/Lewinsky scandal. Status quo health care won by default.

Has the status quo been successful? … Back in 1998 total national spending for health care was $1.1 trillion; in 2008 it more than doubled to $2.4 trillion.

Back then we were easily distracted by a sex scandal, now we are so intense about it that I read someone bit off another person’s finger while arguing at a health care reform rally in California.

I am beginning to wonder what the prevalence of public sanity is the United States?

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

What price hope? Multiple Sclerosis medications

Can anyone really put a price on hope? Pharmaceuticals sure seem to have a knack at it, enough to create a $6 billion Multiple Sclerosis medications market.

‘Our story’ dates back to the dawn of the original Betaseron trials. Betaseron rejected Patti as too progressed; she had a minor foot drop. Following FDA approval Patti’s prescription plan rejected her for Betaseron … yes you guessed it, because Betaseron, itself, had previously rejected her.

In another couple years Patti was in a wheelchair. What if … ?

Well, ONLY Betaseron has enough history to be studied.

The American Academy of Neurology has heard an earful. In 2005, preliminary data from a 16 yr study showed that about 50 percent of those in the original Betaseron group reported the ability to walk without assistance compared to 41 percent of those from the placebo group.

This Spring, Bayer (makers of Betaseron) claimed “early initiation and sustained exposure to Betaseron were strongly associated with a reduced risk of a negative outcome (EDSS score ≥ 6.0, wheelchair use or conversion to SPMS) after 16 years”.

OK, now I am no rocket scientist but the difference between Betaseron and placebo was basically a 9% better chance of walking without assistance, or in Bayer-speak a “reduced risk of a negative outcome”.

What then is the price of a 9% better chance?

Back in the beginning with NO competition Betaseron ‘out of pocket’ was around $1,000 / month = $12,000 year. Today there are six Multiple Sclerosis medications. Curious how much competition has driven down that original price?

AVONEX $2,242/mo = $26,904/yr
BETASERON $2,113/mo = $25,356/yr
COPAXONE $2,376/mo = $28,512/yr
NOVANTRONE $1,389/mo = $16,674/yr
REBIF $2,327/mo =$27,924/yr
TYSABRI $ 2,612/mo = $31,344/yr

Something is just not right with this picture.

Insurance co-pays and/or medical assistance may help some to afford a better chance; however pharmaceuticals are still getting their money one way or another from a US health care system that is collapsing around us all.

Merchants of hope? … or pirates of hope?

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

P.S. Patti tried Avonex at the turn of the Millennium. Avonex then cost $1,250/mo. We paid $500/yr co-pay. Balance of $14,500/yr absorbed by her long term disability company health insurance plan. No positive results, discontinued after two years.

disability 'dashboard' gauges Multiple Sclerosis

Take a glance below at the image of Patti’s Multiple Sclerosis dashboard disability gauges.

EDSS gauge reflects Kurtzke Expanded Disability Status Scale (EDSS) a method to quantifying disability in Multiple Sclerosis from 0 = normal neurological exam though 10 = death due to MS.


ADL gauge refers to the Modified Barthel Scale to measure performance in basic Activities of Daily Living (ADL) from 100 = independent through 0 = totally dependent on others.


Running on empty might be a fair observation, though it would be both correct and incorrect.


Why should the victories and experiences of those who have progressed beyond independence fade into shadows or become invisible?


Too many stories of people with MS fade away or disappear as MS progression takes away the ability to tell their own story.


Stories do not end with independence they evolve as here in Caregivingly Yours, the caregiver blogs linked on this page and more out in the blogosphere. Those who care … caregiver, carer, spouse caregiver, family caregiver, well spouse, family, friends, aides or whatever become part of their story.


Pictured below are the exact same MS dashboard disability gauges just from a different view.

Behind this picture was support and care. It took multiple aides plus a lift at Patti’s care facility to get Patti up, transferred, washed, and dressed. I transported her in our wheelchair accessible van, assisted her with eating, and pushed her through the streets to the captured moment in time. In spite of heat, humidity, and dependency Patti supplied the intangible … her spirit.

While Multiple Sclerosis steals the body and mind, piece by piece, from the person diagnosed with MS it also steals THEM from YOU. Everyone changes.

Does everyone evolve? Isn’t that answer really up to you?

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

health info-mation

Something like 61% of Americans go online to seek health-related information.

When “our story” of living with Multiple Sclerosis as a family first met the Internet in the early 90’s it was on an AST computer with 4 RAM, using Dos commands to open programs (even Windows). With a dial up connection, I first discovered ‘others’ on the Prodigy network's Multiple Sclerosis bulletin boards.

Today it is a different world.

Top 20 Health Websites 8/5/2009 eBizMBA

Feel like a kid in a candy shop? Try to ask yourself …

How is the information reviewed?

“Mavens” and “experts” abound; but to paraphrase Glinda, “Are you a good maven or a bad maven?”

Who pays for the Web site?

"This is great news for marketers …They have another way into the office." 3 Out of 4 U.S. Nurses Recommend Health Websites to Patients

“Visitors to the HealthCentral websites were more likely to request prescription drugs from their physicians than were visitors to competing sites …” Medical Marketing & Media

Or, what the hell, just start one yourself …
(read out loud using your best Billy Mays' voice) “grab your very own super-profitable "Health Biz in a Box" right away! … Ordinarily $1,497.00, but yours for just $47 if you order now or within the next 5 days!!”

Remember … Let’s be careful out there!

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

spouse caregiver / IMHO

Being a spouse caregiver is rarely a stand alone role. Though crucial it may not even be foremost of your family responsibilities. In our story, every morning redefined the dilemma of caregiving vs parenting; Patti progressively declined while our daughter simultaneously grew up.

Spouse caregiver is never an exemption from the lives of others, whether parent, sibling, grandparent, aunt, uncle, or friend.

Even the label ‘spouse’ caregiver confounds. Why is caring any more about gender and marital status than it is about race or creed? If “blood is thicker than water”, then wouldn’t that make spouse caregiver ‘the weakest link’?

Seemingly infinite variables of those in need and those who give care fragment us into an abstract to those looking in. Finding a composite of a ‘spouse caregiver’ would be like the man below seeing a 'face' in the painting.

Perhaps intuitively, who knows? We caregivers somehow convert that abstract canvas into a collage of life.

In our story, I simply made it up as I went along. It has been a 19 year see-saw ride. Patti’s Multiple Sclerosis progression brought increasing dependence while raising our daughter as basically a single parent from 18 months to adult was about teaching independence.

We had to raise a daughter not only in a family living with a parent's progressive MS but also to live in the able bodied world. We carved out time to experience things WITH Mom and also carved out time to experience more able bodied adventures WITHOUT Mom.

One such able bodied tradition through the years has been hiking in Shenandoah National Park. I consider myself blessed that our now 21 yr old would still put up with Dad, and his antics, on a nostalgic respite overnighter in the mountains.

http://www.youtube.com/watch?v=vI3kHXYF838

So what is this entry actually about? Or am I simply rambling? IMHO (in my humble opinion) “spouse” caregiver may be best explained by the Danish philosopher Søren Kierkegaard, “Once you label me you negate me.”

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

a Swank Diet and Casino Therapy

Why do North America and Western Europe have considerably higher rates of MS than the rest of the world? Why is MS, 8 times more prevalent for inland populations than those living along the coast of Norway?

60 years ago, Dr. Roy Swank, University of Oregon Medical School, decided to study the relationship between diet and MS.

Swank’s study spanned 35 years and tracked over 150 MS patients; half following his Swank diet and the other half a standard western diet, high in saturated fat, dairy products and meats.

SWANK DIET

Swank Diet participants had 80% reduction of MS exacerbations during the first 3 years; only 5 % of these patients suffered any deterioration after 35 years.

We never ‘got’ the easy to follow aspect of the diet. Between juggling spouse caregiver, raising our daughter, homemaking, and working … meal planning and preparation became expendable. Nor could “Meals on Wheels” and/or home health aides be expected to comply. Most importantly, Patti had STRONG feelings about what she ‘likes’ and does ‘not like’ to eat, delivery is only a phone call away.

Reading the recent issue of NMSS Momentum magazine, The skinny on the Swank MS Diet, reminded me of the debate over diet and MS.

While studies are studies, sometimes you just stumble onto solutions. Tonight we discovered Casino Therapy.

We found ol’ fashioned, one-armed bandit, slot machines at Hollywood Casino. Parking Patti in her wheelchair on the side of an end machine, I was able to prompt Patti to alternate stretching her left and right arm out pulling the slot machine arm for over an hour (minus cigarette breaks).

For whatever reason, Patti rarely uses her left arm, and exercise in general is tough in a wheelchair. Tonight’s workout must be a record and even cheaper than physical therapy since we started with $1 and left with $1.

We wrapped it up with snacks track side at the adjoining race track enjoying the summer night.

Cigarettes, soda, and cookies are NO Swank Diet but then again Casino Therapy has got to count for something. No teaspoon of cod liver oil could equal as many smiles or as much laughter.

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

Dear Special Olympics Family ...

"... It is with a heavy heart that I write to let you know that my mother, Eunice Kennedy Shriver, passed away early this morning. …"

Portrait of Eunice Kennedy Shriver by David Lenz
National Portrait Gallery, Smithsonian Institution

" ... My family and I would be proud and honored if you would take some time to learn more about her life, share your own remembrances about her, and read the remembrances of others at a website that was recently established to honor her legacy, www.EuniceKennedyShriver.org.
In the spirit of her hope that everyone would share in the power of Special Olympics, I hope you’ll not only read and contribute to the site, but share it with friends."

With great appreciation,
Timothy P. Shriver

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

accessible fruit: donut peaches

Accessible fruit! Who would have thought?

With Patti’s Multiple Sclerosis progression holding and eating some of her favorite foods has become too challenging. As her spouse caregiver, I am always on the look out for solutions and options that can enable her.

Stopping at a road side fruit stand I discovered Donut Peaches (aka Saturn Peaches, aka Angel Peaches, aka Chinese Pan Tao Peaches).

Patti loves peaches. However MS progression was making holding and eating a peach next to impossible. That is until we tried “accessible” donut peaches! They were a hit, easy to hold and easy to eat!

Don’t just take our word for it. Mother Earth News offers the top reasons to eat a Donut Peach:

1. They taste better than other peaches. They're sweeter, with almond overtones.


2. They are lower in acid than other peaches.


3. The pit doesn't cling to the flesh, so it's easy to pop out with your thumb.


4. The fruit's thin, red skin has little or no fuzz.


5. Their small size lends itself to being eaten out of hand.
   

You just have to like a snack high in Vitamins A and C and only 37 calories per peach.


Thank God when nature lends you a hand.


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

monster truck wheelchair shopping cart

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 ...

on death, dying, underwear, and socks

Happy 40th anniversary to “ON DEATH AND DYING” by Elisabeth Kübler-Ross, and her five stages of grief: denial, anger, bargaining, depression, and acceptance.

In this Internet age with cyberspace immortality, I am beginning to wonder about ‘acceptance’.

Deaths send the media scrambling to Facebook and MySpace to browse for sensational tidbits from the deceased and ‘friends’. Your words, rants, and pictures are forever.

How do families even access journals or social networks if they do not know the passwords? How do they note that someone is dead!

What is with posting comments on dead people’s pages?

Why do ‘friends’ still invite the dead to join Mafia Wars?

What is proper etiquette? Tweet, email, or post an entry to notify friends of a death.

Ahhh! The problems of cyber-immortality.

Of course, we caregivers have to assume 'real' immortality or at least the methuselah gene, too much depends on us waking each moring. We've been in denial too long to ever evolve.

How many accounts from banking, to credit cards, to bills will require someone to know your passwords to access those accounts? … and oh yes, they may read all your old email.

Somewhere I remember an admonition from my Mom about always wearing clean underwear and matching socks because you never know when you are going to die.

Amazing how that seems to make more sense each day.

Is this the future, keyboards instead of ouija boards?

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

respite care: teen autism & special needs

Recently a father emailed me about day care for a teenage son diagnosed with autism. I wish I had a better answer to give than only suggest a method to search for local resources.


Opening our Sunday paper, I was surprised to find this front page story:

PARENTS PRAISE RESPITE CARE

“Finding a sitter for a special needs individual, child or adult, is often impossible,”

In the news story, a parent whose son is diagnosed with autism and mental retardation touches a poignant and pragmatic aspect of special needs respite, helping to prepare transition.

Finding genuine respite may be like finding the Holy Grail for families living with special needs.

From my view, most available activities and programs seem to require a parent in attendance from accompanying a Pennsylvania Department of Mental Retardation aide to Easter Seals social activities such as bowling, swimming, and cooking.

Whether technically respite or not, certainly there is camaraderie to such activities and parent to parent contact, support, and information exchange are invaluable.

Inquiring minds might notice that United Cerebral Palsy hosts the respite center and Easter Seals sponsors the social activities. Googling “teen autism” locally may not even find these resources easily.

Summertime amplifies need because special education takes a vacation.

Summertime traditions may as well be a parallel universe. These are teens and young adults that cannot be dropped off at a pool or amusement park. Camps for special needs are far and few and expensive.

It takes somehow finding the time in a day with no time to mine for gold through the fragments of local information available.

More media attention on caring resources is a special need we all share.
Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

health care reform, what me worry?

Is anyone else getting a headache trying to follow health care reform?

“What, me worry?” is not an illogical response to the overload of confusion and squabbling, especially when most people have some kind of health insurance.

Or is it? … Almost 5 years ago during a ‘Back to School Night’ at our daughter’s high school German class I stared in amazement at a student created display board of ‘features of Germany’. “Guaranteed Health Care for Everyone” was ranked #1.

Makes me wonder if confusion is intentional?

Players have no motive to change. Physician, medical insurance, and pharmaceutical parking lots look like BMW dealerships while for ‘we the people’ 50% of mortgage foreclosures and 62% of bankruptcies result from health care costs whether insured or not.

What happened to doing the right thing?

As a spouse caregiver for nearly 20 years and living with Multiple Sclerosis as a family we have seen US health care for both its best and its worse. Increasingly it is more like being in the belly of the beast.

Interestingly, this week on July 30th will mark the 44th anniversary of Medicare. While Medicare is certainly not perfect, it was a benchmark in caring as a society and has benefited countless Americans for decades.

‘Great Society’ legislation including civil rights, Medicare, Medicaid, education, and the ‘war on poverty’ were not accomplished with oratory, town hall meetings, public opinion polls, or consensus. President Lyndon Johnson strong armed Congress and twisted politicians’ arms until they did the right thing.

Doing the right thing is rarely the easiest way.

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

Caring is as caring does

Today, July 20th, is our 24th wedding anniversary. My 20th anniversary as a spouse caregiver lies 5 months ahead; yes, Patti still has Multiple Sclerosis.

Phenomenal what science CANNOT accomplish.

40 years ago, on July 20th, I sat mesmerized by television images of Apollo 11 successfully landing on the moon. Only a dozen years earlier, I watched the Soviet Union’s Sputnik satellite float across the night sky.

Phenomenal what science CAN accomplish.

Science is as science does.



As pictured, 24 years ago, it was an eclectic reception, cake was traditional attire was not. Foregoing the rote vows of "in sickness and in health ..."; we embraced the poetry of Khalil Gibran.

“Give your hearts, but not into each other's keeping.
For only the hand of Life can contain your hearts.”

In spite of progression of Multiple Sclerosis, home care, and care facility era endlessly redefining our lives, the poetry sings through time.

“Let there be spaces in your togetherness,
And let the winds of the heavens dance between you.
Love one another, but make not a bond of love.”

Caring is as caring does.

In my private daily temple to "if you can put a man on the moon, why can't you cure ..." NASA photos of Apollo 11 decorate our laundry room; one small step for man one giant leap for appliances.



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

Living with MS is a story of families

“The worst thing that happened during my teenage years was my mother becoming ill. She was diagnosed with Multiple Sclerosis … when I was fifteen. … it was a terrible shock to hear that she had an incurable illness, but even then, I did not fully realise what the diagnosis might mean.”

Anne Rowling died at age 45 after a 10-year battle against multiple sclerosis.

"I was writing Harry Potter at the moment my mother died. I had never told her about Harry." shares author JK Rowling.

Sitting in a movie theatre viewing the midnight release of the latest Harry Potter movie I reflected on how Rowling’s magical storytelling has intertwined our story.

It was 10 years ago “Harry Potter” first came home with us from a book store outing. It was the last Harry Potter book we would ever buy only one copy of.

For Megan and me, midnight book releases over the last decade have kept us awake until our two copies were read cover to cover. Talking book versions for Patti have never captured her attention and midnight anything is not for her.

Living with MS as a family is about more than Multiple Sclerosis itself. Anxiety about family worms its way into your head.

What effect does a parent with MS have on a child? In 1989 there was NOTHING good available, factually or anecdotally.

While we searched in vain, elsewhere Jo Rowling was a research assistant for Amnesty International. Michelle Robinson was a summer associate at a Chicago law firm. Both would shortly loose a parent to Multiple Sclerosis.

“I am constantly trying to make sure that I am making him proud -- what would my father think of the choices that I've made …” Michelle (Robinson) Obama

"Barely a day goes by when I do not think of her. There would be so much to tell her, impossibly much. … Support for people living with MS is as woefully inadequate today as it was (then). She would have found that difficult to understand, and so do I.” JK Rowling

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

cursing and swearing and Multiple Sclerosis, oh my!

Cursing and swearing has always been one of the oddest changes in Patti with Multiple Sclerosis progression.

“World-renowned expert in cursing”, Dr. Timothy Jay, Massachusetts College Of Liberal Arts offers:

“Swearing is like using the horn on your car, which can be used to signify a number of emotions …”

(“The utility and ubiquity of taboo words” Perspectives on Psychological Science, April 2009)

Dr. Richard Stephens of Keele University in England concludes

"I would advise people, if they hurt themselves, to swear."

(“Swearing as a response to pain” August 2009 NeuroReport)

Challenging economic times have obviously not affected academic funding for research.

Previously, in caregiving: “Hello! You little brat!” I discussed disinhibition, dysphasia, and dysarthia as factors in MS and speech challenges.

Cursing and swearing is different than language, activating the emotional centers in the right side of the brain, rather than the cerebral communication centers on the left.

While trying to watch “Brüno” at a theatre last night Patti experienced one of her ‘choking-like episodes’. Triggered by a scene Patti found hilarious, obviously too hilarious, communication between her brain and throat muscles went all out of MS whack.



When you factor in all the muscle miscommunication ‘not involved’ in swallowing due to MS related dysphagia and left vs right side who’s in charge here you can get an epic portrayal of choking except that Patti is not actually choking. Calming her, distracting her, ‘rebooting her brain’ are the best ways to resolve these episodes.

Coughing, hacking, and gasping for breath is punctuated with expletives that could turn any theatre into X-rated.

Shortly I found a well intended patron at our side offering to help, exiting into the hallway we were joined by theatre staff.

Patron: “Is she OK?”

Patti: “NO!” (gasp) “I am f@cking choking!” (cough)

Patrick: “Patti you are NOT choking!”

Patti: “Eat sh#t (hack) and die (gasp) muther f#cker!”

Staff: “Should I call an ambulance?”

Patti: “No! (cough) You as*hole. (belch) I need a cigarette.”

At least it is NEVER boring!

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

Multiple Sclerosis and Long Term Care: PROXIMITY

Knowing what I know now, what do I consider the most important factors about Multiple Sclerosis patients in long term care facilities?

Families are at their most vulnerable when wading through the exhaustion, emotions, and confusion of home care vs care facility decision making. Foresight is elusive, on the other hand:

“Hindsight is always twenty-twenty.” Billy Wilder

Over the past five years some factors have become more important than others.

Proximity tops our list!

Continued involvement with family, friends, and home is quintessential. Proximity keeps everyone just a hop, skip, and a jump away. “Out of sight, out of mind” can too easily become a trap of convenience.

In our story, Patti’s care facility is 11 miles away. In 17 minutes I can be there to pick her up for an outing, bring her home for the evening, or simply include her in running around.

Proximity is also about a facility’s neighborhood. Transferring to and from different vehicles may get challenging so it is important to have nearby activities. In our story, it is an easy 15-20 minute wheelchair push through an adjoining park to a mall with a movie theatre, restaurants, and shopping.

Most important to the definition of proximity is YOU, family and friends and how you CONTINUE to be a part of their life in this latest chapter.

Do not expect any facility to replace family. Rumor has it that St. Peter checks his list at the Pearly Gates against the visitors’ lists from long term care facilities.

Life gets busy, carve your involvement in stone. My goal, for example, is to include Patti in 4.5 evenings per week each winding down with me preparing, transferring, and tucking her into her bed myself.

Caring is never about a building it is about people.

For further information, visit Care Facility: Transition to care facility from home care.

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

caregiving: Happy DEPENDENCE Day!

(from the Boston Globe)

Our parents raised us to be independent. We raise our children under the same rubric. What we left out is the lesson that caregiving continues through the life cycle.

About 34 million Americans provide at least some of the care for family members and yet we don’t see it as a normal, predictable part of the life cycle.

we retain “this hazy idea that we’ll all be healthy for years and years and then just die.’’ ...

Happy Dependence Day

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