Safety nets, heroes, and heart

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 ... 

Speech & Voice Multiple Sclerosis

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

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 ... 

a Zombie Zinfandel evening

Here in South Central Pennsylvania, small town Halloween parades abound this time of year. Nothing rivaling Macy’s Thanksgiving Day Parade, just small town life celebrating being alive. Fire trucks, high school marching bands, scouts, dance schools, classic cars decorated for Halloween, and costumes.

Calling ahead to Patti’s care facility, multiple aides with lifts kindly got Patti ready, changing and dressing her in outdoor clothing. Arriving with our wheelchair accessible van in addition to zipping Patti up in a winter coat, I pulled on a pair of leggings over Patti’s pants. A walking moving person generates more body heat than those who are wheelchair confined.

 

Being over 21, we added some Zombie Zinfandel to Patti’s wheelchair back pack.

At first it was like attending the parade with one of the two grumpy old men heckling muppets, as Patti intermittently shouted back expletives at cheering marchers. 

The toll of MS progression on the brain may explain some of this.Previously discussed in:

caregiving: “Hello! You little brat!”

cursing and swearing and Multiple Sclerosis, oh my

caregiving: Horton hears a *&#!

Fortunately once settled down or the Zombie Zin taking affect, Patti got into the festive spirit.

Our favorite part was costumed pets. What were their owners thinking? The piece de resistance was a Labrador costumed as a cow. You would think a faux cow doggie blanket and cow horns would be enough humiliation. Not so, below the dog hung a rubber cow udder. … Slinking along the parade perimeter with its head down in shame, the dog came over to Patti, laid its head on her lap, looked up at her with the saddest dog/cow eyes you have ever seen, and just drooled.

When we stopped laughing we agreed that was one dog that would need some serious therapy after the parade.

Fatigue is somewhat exponential with Multiple Sclerosis. And while the evening may have been short by most standards we packed it with good times, laughter, and a small town celebration of being alive and out.

Above all living with Multiple Sclerosis is about ‘living’.

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

medical marijuana multiple sclerosis

Cannabis use has been around since the Stone Age (no pun intended) for everything from fiber to recreation to spiritual to medicinal purposes.

So why in this 21st Century when people who are suffering reach out for pain relief and help are governments acting so inconsistently.

Canada, Austria, Germany, the Netherlands, Spain, Israel, Finland, and Portugal are among nations that use cannabis in medicine.

Here in the United States, almost a quarter of the population live in States that have approved medical use of marijuana, but the Federal government interferes and denies by bullying. What ever happened to States rights much less ‘we the people’ caring?

Within the US Multiple Sclerosis community the National Multiple Sclerosis Society seems to have its head in the sand.

“it is the opinion of the National Multiple Sclerosis Society's Medical Advisory Board that there are currently insufficient data to recommend marijuana or its derivatives …” NMSS: Marijuana (Cannabis) 

On the other hand with their heads in peaking fall foliage, out of Maine comes this story. 

“Since 1999, 23 studies have appeared in peer-reviewed journals demonstrating the efficacy of marijuana as a treatment … Without a doubt, this is a medicine that can greatly improve the quality of life of extremely sick people.” Qualified patients need safe way to obtain medical marijuana

Montel Williams who actually lives with MS pain admittedly uses and lobbies for medical marijuana.

The National Institutes of Health (NIH) is funding current Temple University research.

 Marijuana chemical may slow multiple sclerosis

“This is a totally new approach to treating this disease, ... These cannabinoids hold enormous potential …”

Should a political border determine who has access to what pain relief? … In 1995 Health Canada approved the prescription use of Sativex® a cannabinoid oral spray for the treatment of MS-associated pain.

Recently a dear friend with both RN and PhD following her name asked me to share a site, Patients Out Of Time Cannabis As Medicine.

When I asked Patti about how she felt about medical use of marijuana, she simply fixed me with a look like which one of us is cognitively impaired here. 
---------------------------

UPDATED 10/19/2009 ...

MEMORANDUM FOR SELECTED UNITED STATES ATTORNEYS ON INVESTIGATIONS AND PROSECUTIONS IN STATES AUTHORIZING THE MEDICAL USE OF MARIJUANA

FROM: David W. Ogden, Deputy Attorney General

"...This memorandum provides clarification and guidance to federal prosecutors ... pursuit ... should not focus federal resources in your States on individuals whose actions are in clear and unambiguous compliance with existing state laws providing for the medical use of marijuana...."

--------------------------------------------------------

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

Stock Market & Multiple Sclerosis

If you or I sold something that was not what it was supposed to be, what would happen to us?

Yet for players in the Multiple Sclerosis stock market, money can be made win, loose or draw.

It makes you wonder …

Not long ago Acorda sold “overseas” rights:

“… Acorda has had operating losses since inception … In order to sustain operations beyond 2010, Acorda sold overseas rights to Fampridine SR to Biogen Idec Inc. in July of this year and received an upfront payment of $110 million …” (Will Acorda Walk The Talk?)

Today it seems to be abandon ship:

“ … Food and Drug Administration issued a negative opinion that questioned the safety and effectiveness of the company's multiple sclerosis drug...." (Fampridine-SR) Acorda shares plunge on negative FDA review

Does it seem to anyone else that too much Multiple Sclerosis news is reported by the financial media?

... UPDATED 10/15

"Acorda Therapeutics received the support of a Food and Drug Administration panel for its multiple sclerosis drug, increasing confidence in the drug's approval and sending shares up 53%..."Acorda Shares Rise On FDA Panel Vote Supporting MS Drug

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

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 ...