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.