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.
Tuesday, September 01, 2009
Thursday, August 27, 2009
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.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
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 ...
Monday, August 24, 2009
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 ...
Friday, August 21, 2009
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.
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
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 Leerweb site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Saturday, August 15, 2009
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 ...
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 ...
Tuesday, August 11, 2009
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 ...
Sunday, August 09, 2009
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:
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 ...
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:
- They taste better than other peaches. They're sweeter, with almond overtones.
- They are lower in acid than other peaches.
- The pit doesn't cling to the flesh, so it's easy to pop out with your thumb.
- The fruit's thin, red skin has little or no fuzz.
- Their small size lends itself to being eaten out of hand.
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 ...
Friday, August 07, 2009
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 ...
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 ...
Thursday, August 06, 2009
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.
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 ...
Monday, August 03, 2009
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:
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
Opening our Sunday paper, I was surprised to find this front page story:
“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/
Wednesday, July 29, 2009
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/
“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/
Monday, July 20, 2009
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.
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 ...
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.
In spite of progression of Multiple Sclerosis, home care, and care facility era endlessly redefining our lives, the poetry sings through time.“Give your hearts, but not into each other's keeping.
For only the hand of Life can contain your hearts.”
“Let there be spaces in your togetherness,Caring is as caring does.
And let the winds of the heavens dance between you.
Love one another, but make not a bond of love.”
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 ...
Friday, July 17, 2009
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 ...
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 ...
Monday, July 13, 2009
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:
(“The utility and ubiquity of taboo words” Perspectives on Psychological Science, April 2009)
Dr. Richard Stephens of Keele University in England concludes
(“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 ...
“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 ...
Sunday, July 12, 2009
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:
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 ...
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 ...
Saturday, July 04, 2009
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 ...
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 ...
Monday, June 29, 2009
mining for home medical equipment
Food, water, clothing, shelter, and home medical equipment are the necessities of life for caregiving.
Recovery, progression, and death endlessly flood the market with previously owned durable medical equipment.
Sellers are motivated more to get rid of something than profit from it. Downsides could include absence of warranties and such, and medical insurance, if applicable, may not cover equipment from ‘non-authorized’ vendors.
Yet, there ARE deals available. I myself witnessed at a local auction an Invacare 9000 folding wheelchair in mint condition (guestimate value $750+) go for a high bid of $50.
Good shopping skills are required (especially on the Internet) as things may not always be what they seem, for example:
Admiring a Hoyer Power Lift with Power Base (cost $4,600) in use at Patti’s care facility, I remarked how different my life would be IF I had one of these at home. An aide pointed out that she had seen one on craigslist for only a couple hundred bucs.
Checking out craigslist I found “Hoyer electric patient lift. Model HPL402. 3 1/2 years old. Good condition and everything works as it should. These list new at $2500, this is for sale for $600.”
With a few clicks more of Internet searching I found a couple NEW Hoyer model HPL402 listing for $1,600.
Shifting to eBay a search of “Hoyer lifts” revealed a NEW model for only $1,295. However, reading the fine print it was actually an Invacare Reliant Plus Lift, similar concept but different brand.
NEITHER was the exact same model as used at Patti’s care facility. Then again for homecare one-person use you may not need the same high end features.
Both Disabled Dealer Magazine and usedHME.com have searchable nationwide classifieds by item and area.
While the Internet offers caregiver convenient shopping DO NOT ignore local classifieds and auctions.
There’s gold in them thar previously owned durable/home medical equipment hills. Just remember where there is gold there is also fools gold, shop wisely.
Pragmatically mining the recycled market is not prospecting.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Recovery, progression, and death endlessly flood the market with previously owned durable medical equipment.
Sellers are motivated more to get rid of something than profit from it. Downsides could include absence of warranties and such, and medical insurance, if applicable, may not cover equipment from ‘non-authorized’ vendors.
Yet, there ARE deals available. I myself witnessed at a local auction an Invacare 9000 folding wheelchair in mint condition (guestimate value $750+) go for a high bid of $50.
Good shopping skills are required (especially on the Internet) as things may not always be what they seem, for example:
Admiring a Hoyer Power Lift with Power Base (cost $4,600) in use at Patti’s care facility, I remarked how different my life would be IF I had one of these at home. An aide pointed out that she had seen one on craigslist for only a couple hundred bucs.
Checking out craigslist I found “Hoyer electric patient lift. Model HPL402. 3 1/2 years old. Good condition and everything works as it should. These list new at $2500, this is for sale for $600.”
With a few clicks more of Internet searching I found a couple NEW Hoyer model HPL402 listing for $1,600.
Shifting to eBay a search of “Hoyer lifts” revealed a NEW model for only $1,295. However, reading the fine print it was actually an Invacare Reliant Plus Lift, similar concept but different brand.
NEITHER was the exact same model as used at Patti’s care facility. Then again for homecare one-person use you may not need the same high end features.
Both Disabled Dealer Magazine and usedHME.com have searchable nationwide classifieds by item and area.
While the Internet offers caregiver convenient shopping DO NOT ignore local classifieds and auctions.
There’s gold in them thar previously owned durable/home medical equipment hills. Just remember where there is gold there is also fools gold, shop wisely.
Pragmatically mining the recycled market is not prospecting.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Saturday, June 27, 2009
caregiving: making an entrance
Challenge? Or obstacle? The answer is not exactly in the proverbial eye of the beholder, but often in the resources, ingenuity and strength of the caregiver.
For reasons that never quite make sense, live music in intimate settings seems to bring the best out in Patti. I stare in amazement as she handles food and beverages with better dexterity than normal. Last night it was 9 PM before she asked about going to bed, almost 90 minutes later than her norm.
Yes, some outings are harder on a caregiver. Yet, when the pluses outweigh the challenges you go for it!
Before visiting historic Eckels’ Ice Cream Parlor our first time, I did my caregiver walk-through in advance. Oh yeah! This would be a challenge and a half. Three short wide front steps to a double door should have been relatively easy except unfortunately for us they are divided by a center hand rail creating two sets of steps too narrow for a wheel chair. Alternative side door has a single step but with a peak height over 24” due to slope of adjacent alley.
Positioning Patti’s rear wheels against the step and reclining her back to almost prone position I could use the shifting of her weight to facilitate pulling her chair up and over the step.
As Patti laughingly remarked, we do know how to make an entrance. Banging and bumping her chair around though furniture in the quaintly decorated interior we eventually got her all set up at a table to enjoy our friends “The Buc Hill Aces” perform.
http://www.youtube.com/watch?v=eCKm3_hb3Mc
As you might guess from the video, Eckels' is MORE than just another ice cream parlor.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
For reasons that never quite make sense, live music in intimate settings seems to bring the best out in Patti. I stare in amazement as she handles food and beverages with better dexterity than normal. Last night it was 9 PM before she asked about going to bed, almost 90 minutes later than her norm.
Yes, some outings are harder on a caregiver. Yet, when the pluses outweigh the challenges you go for it!
Before visiting historic Eckels’ Ice Cream Parlor our first time, I did my caregiver walk-through in advance. Oh yeah! This would be a challenge and a half. Three short wide front steps to a double door should have been relatively easy except unfortunately for us they are divided by a center hand rail creating two sets of steps too narrow for a wheel chair. Alternative side door has a single step but with a peak height over 24” due to slope of adjacent alley.
Positioning Patti’s rear wheels against the step and reclining her back to almost prone position I could use the shifting of her weight to facilitate pulling her chair up and over the step.
As Patti laughingly remarked, we do know how to make an entrance. Banging and bumping her chair around though furniture in the quaintly decorated interior we eventually got her all set up at a table to enjoy our friends “The Buc Hill Aces” perform.
http://www.youtube.com/watch?v=eCKm3_hb3Mc
As you might guess from the video, Eckels' is MORE than just another ice cream parlor.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Friday, June 26, 2009
MS: Is a bird in memory worth two on the head?
Picking Patti up for an outing from her care facility:
Patrick: “So Patti did you do anything interesting today?”
Patti: “I don’t think so. My memory sucks.”
Patrick: “Maybe a bird sat on your head?”
Patti: (laughing) “I am pretty sure that no f…king bird sat on my head!”
Memory loss symptoms of Multiple Sclerosis can be bizarre and challenging to work with.
Best solution is to be more than a part of someone’s memory, be a part of their NOW.
Patrick: “So Patti did you do anything interesting today?”
Patti: “I don’t think so. My memory sucks.”
Patrick: “Maybe a bird sat on your head?”
Patti: (laughing) “I am pretty sure that no f…king bird sat on my head!”
Memory loss symptoms of Multiple Sclerosis can be bizarre and challenging to work with.
Best solution is to be more than a part of someone’s memory, be a part of their NOW.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
Tuesday, June 23, 2009
MS, ALS, Lupus
Misdiagnosis is too abstract of a word for the human shock and range of emotions that impact people and families hearing MS (multiple sclerosis), ALS (amyotrophic lateral sclerosis), or Lupus and then that they may actually have one not the other.
Explaining that symptoms ‘mimic’ other illnesses seems more like the bed side manners of a carnival barker.
Does our health care system push billing codes ahead of science? Or is it more about wanting and wanting to give quick answers to the unknown.
Whatever the reason people and families must live with symptoms. Diagnosis is the elephant in the room that some can choose not to see, but one person must always see.
Not only does neurological science need to do a better job but family and friends need to bring meaning to life regardless of the label of a loved one’s “bad break”.
During July 4th celebrations this year, take a moment to reflect on the 70th anniversary of this most powerful and poignant moment:
Major League Baseball has teamed with four major non-profit organizations. "4♦ALS Awareness," will culminate with Gehrig's words being read at all Major League ballparks this coming July 4, during the seventh-inning stretch.
Lou Gehrig's speech
http://www.youtube.com/watch?v=a4msaZTJrTA
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Explaining that symptoms ‘mimic’ other illnesses seems more like the bed side manners of a carnival barker.
Does our health care system push billing codes ahead of science? Or is it more about wanting and wanting to give quick answers to the unknown.
Whatever the reason people and families must live with symptoms. Diagnosis is the elephant in the room that some can choose not to see, but one person must always see.
Not only does neurological science need to do a better job but family and friends need to bring meaning to life regardless of the label of a loved one’s “bad break”.
During July 4th celebrations this year, take a moment to reflect on the 70th anniversary of this most powerful and poignant moment:
"For the past two weeks you have been reading about a bad break I got. Yet today I consider myself the luckiest man on the face of the earth. ...... I might have been given a bad break, but I've got an awful lot to live for. Thank you."
-- Lou Gehrig, July 4, 1939
Major League Baseball has teamed with four major non-profit organizations. "4♦ALS Awareness," will culminate with Gehrig's words being read at all Major League ballparks this coming July 4, during the seventh-inning stretch.
Lou Gehrig's speech
http://www.youtube.com/watch?v=a4msaZTJrTA
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Friday, June 19, 2009
Jubilee Day 2009 / Multiple Sclerosis
After 60+ nights of cluster headaches I personally felt more like a mole in a whack a mole game, but Thursday was Jubilee Day, the largest one-day street fair in the eastern United States.
Street fairs are not only optimum for the logistics of shopping from a wheel chair but for the human interaction with artists.
Following lunch we were enjoying harpist Shawn Ruby at the Community Stage on East Main. Bringing her harp down off the stage, she offered to let people try playing it. I rolled Patti up to take a whack at it. Shawn could not have been nicer working to position the harp for Patti’s wheelchair and ‘helping/joining’ Patti because of her MS visual and physical symptoms to strum away.
Patti’s new necklace was purchased from
Harmony in Design. They create ‘born again’ art from antique silver forks and spoons. Meeting and visiting with Jim and Lisa Harmon was a treat. Not only did they give Patti respect and the additional time her MS symptoms require to try and ‘see’ and ‘choose’ jewelry, their Samoyed, “Glacier”, is ‘in training’ to be a service dog and became a fast buddy to Patti.
The picture of Patti was taken three hours into what should have been wilting conditions for MS. Her smile says it all. Caring people can often trump nature and make challenges worth trying.
Living with MS and pushing a wheelchair through this human slalom in summer sun, heat, and humidity must by default be some kind of greatest one day MS challenge in the eastern United States, or something like that. Whatever … Patti looks forward to it and come hell or high water we go for it.
Sometimes a story is best told through the random strangers you not only encounter but who care.
While helping Patti with her lunch and related MS symptoms of dsyphagia, a security guard wandered over and asked if he could join us. NO ONE ever anywhere asks to join us. Turns out he also helps to care for a man with Multiple Sclerosis.
Sometimes a story is best told through the random strangers you not only encounter but who care.
While helping Patti with her lunch and related MS symptoms of dsyphagia, a security guard wandered over and asked if he could join us. NO ONE ever anywhere asks to join us. Turns out he also helps to care for a man with Multiple Sclerosis.
Street fairs are not only optimum for the logistics of shopping from a wheel chair but for the human interaction with artists.
Following lunch we were enjoying harpist Shawn Ruby at the Community Stage on East Main. Bringing her harp down off the stage, she offered to let people try playing it. I rolled Patti up to take a whack at it. Shawn could not have been nicer working to position the harp for Patti’s wheelchair and ‘helping/joining’ Patti because of her MS visual and physical symptoms to strum away.
Patti’s new necklace was purchased from
Harmony in Design. They create ‘born again’ art from antique silver forks and spoons. Meeting and visiting with Jim and Lisa Harmon was a treat. Not only did they give Patti respect and the additional time her MS symptoms require to try and ‘see’ and ‘choose’ jewelry, their Samoyed, “Glacier”, is ‘in training’ to be a service dog and became a fast buddy to Patti.The picture of Patti was taken three hours into what should have been wilting conditions for MS. Her smile says it all. Caring people can often trump nature and make challenges worth trying.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Sunday, May 24, 2009
cluster headache: brain writhing on a corkscrew
IT lurks in the peace of sleep. No, that is not quite right it IS sleep itself, intertwined and indistinguishable.
90 minutes after closing my eyes, it (a Cluster Headache) jabs that
corkscrew from hell above my right eye and torturously twists it in and then out. Malevolently crafted, headaches can last from 15 minutes to 2 hours.
"To sleep, perchance to dream- ay, there's the rub."
I admit I fear and resist sleep even while sleep becomes more tempting with sleep deprivation.
My first episode coincided with my first year of juggling Multiple Sclerosis spouse caregiving and raising our daughter. Cause and effect? Coincidence?
Over the past two decades, Cluster Headache episodes occur on average about every 18 months and last from 8 – 12 weeks.
Sleep deprivation eventually dominates any episode. Piles of things around me tell the tale of lost focus. Caregiving is a juggling act, yet one by one the juggled balls fall. My head snaps at the sound of rumble strips as my tires drift across lanes scaring me into adrenalin fueled alertness.
Disabling? Yes, during an actual Cluster Headache. Inconsistent abilities try to move forward through the deepening mud in between. However it WILL end! Or at least, it always has.
Nothing ends without learning. Empathy for pain in others and a window to better understanding life altered by disabling symptoms are lessons learned from a brain writhing on a corkscrew.
by Patrick Leer
90 minutes after closing my eyes, it (a Cluster Headache) jabs that
corkscrew from hell above my right eye and torturously twists it in and then out. Malevolently crafted, headaches can last from 15 minutes to 2 hours."To sleep, perchance to dream- ay, there's the rub."
I admit I fear and resist sleep even while sleep becomes more tempting with sleep deprivation.
My first episode coincided with my first year of juggling Multiple Sclerosis spouse caregiving and raising our daughter. Cause and effect? Coincidence?
Over the past two decades, Cluster Headache episodes occur on average about every 18 months and last from 8 – 12 weeks.
Sleep deprivation eventually dominates any episode. Piles of things around me tell the tale of lost focus. Caregiving is a juggling act, yet one by one the juggled balls fall. My head snaps at the sound of rumble strips as my tires drift across lanes scaring me into adrenalin fueled alertness.
Disabling? Yes, during an actual Cluster Headache. Inconsistent abilities try to move forward through the deepening mud in between. However it WILL end! Or at least, it always has.
Nothing ends without learning. Empathy for pain in others and a window to better understanding life altered by disabling symptoms are lessons learned from a brain writhing on a corkscrew.
Previous related entries:
by Patrick Leer
BLOGS:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/
My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/
Saturday, May 16, 2009
Will the REAL Multiple Sclerosis stand up
I find myself reading journals written by people with Multiple Sclerosis and I ask myself how can this be?
Patti’s MS symptoms of visual impairment and inability to control hands and fingers prevent her from using a keyboard or mouse.
Perhaps voice activated systems, I ask myself? NO, Patti’s MS vocal impairments including slurred speech and inability to modulate plus cognitive impairments have whacked out any and all voice systems we’ve tried.
How can this be?
I read in these blogs written by people with MS about vacations, travel, cruises. How can this be? This is not our MS story.
I ask myself where Patti’s MS non-ambulatory symptoms are. What about the logistics of wheelchair accessible vans meeting them at airports?
I ask myself where Patti’s MS symptoms of total incontinence of both bladder and bowels are which determine range and logistics of travel? Patti’s MS cognitive symptoms prevent use of catheters, Patti amazingly survived pulling out a Foley catheter without rupturing herself.
What are these author’s secrets to living with MS?
I read of people with MS and their work places. How can this be?
Patti’s MS symptoms at the time (slurred speech, numbness in fingers, cognitive and visual impairment) crashed and burned her prior career as a buyer for International Paper within a year of her first hospitalized exacerbation and prevented her from driving for everyone’s safety.
Are these authors driving with MS? How can this be?
Will the real Multiple Sclerosis stand up?
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Patti’s MS symptoms of visual impairment and inability to control hands and fingers prevent her from using a keyboard or mouse.
Perhaps voice activated systems, I ask myself? NO, Patti’s MS vocal impairments including slurred speech and inability to modulate plus cognitive impairments have whacked out any and all voice systems we’ve tried.
How can this be?
“And you may ask yourself
How do I work this?
And you may ask yourself
Where is that large automobile?
And you may tell yourself
This is not my beautiful house!
And you may tell yourself
This is not my beautiful wife!”
I read in these blogs written by people with MS about vacations, travel, cruises. How can this be? This is not our MS story.
I ask myself where Patti’s MS non-ambulatory symptoms are. What about the logistics of wheelchair accessible vans meeting them at airports?
I ask myself where Patti’s MS symptoms of total incontinence of both bladder and bowels are which determine range and logistics of travel? Patti’s MS cognitive symptoms prevent use of catheters, Patti amazingly survived pulling out a Foley catheter without rupturing herself.
What are these author’s secrets to living with MS?
"And you may ask yourself
Where does that highway go?
And you may ask yourself
Am I right? ...am I wrong?
And you may tell yourself
My god!...what have I done?"
I read of people with MS and their work places. How can this be?
Patti’s MS symptoms at the time (slurred speech, numbness in fingers, cognitive and visual impairment) crashed and burned her prior career as a buyer for International Paper within a year of her first hospitalized exacerbation and prevented her from driving for everyone’s safety.
Are these authors driving with MS? How can this be?
Letting the days go by
Into the blue again/after the moneys gone
Once in a lifetime/water flowing underground.
Will the real Multiple Sclerosis stand up?
Same as it ever was...same as it everThen again maybe Kermit the Frog best asks the question how can this be?
was...same as it ever was...
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Friday, May 15, 2009
Multiple Sclerosis & childhood alchemy
Different points of view tell the story of living with Multiple Sclerosis ‘as a family’.
MS and Mother’s Day for Patti’s Mom holds memories ranging from a toddler daughter taking her first steps to that of an adult daughter who can no longer walk; a mind numbing time line that only a Mother’s heart can know.
Patti celebrated only one able-bodied Mother’s Day before Multiple Sclerosis robbed her. The intensity of onset and progression has left her a spectator or absent for so many traditional ‘firsts’ as our daughter grew up.
Our daughter Megan was 18 months old when Multiple Sclerosis changed our lives. Progressing MS symptoms have highlighted yearly the difference in her mother daughter relationship from anyone she has ever known.
15 years ago, confronted with the task of making a home made Mother’s day card, our then 6 yr old daughter used her different point of view to hit one out of the park.
http://www.youtube.com/watch?v=L0sUNNhyH6o
While Patti and I always worried about the impact of MS on raising a child, here was Megan addressing both her Mom’s visual impairment through video which could be viewed on a larger TV screen and her Mom missing her (Patti was having a particularly bad spell and staying with her folks). Childhood alchemy changing anxiety into hope.
Never underestimate different points of view.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
MS and Mother’s Day for Patti’s Mom holds memories ranging from a toddler daughter taking her first steps to that of an adult daughter who can no longer walk; a mind numbing time line that only a Mother’s heart can know.
Patti celebrated only one able-bodied Mother’s Day before Multiple Sclerosis robbed her. The intensity of onset and progression has left her a spectator or absent for so many traditional ‘firsts’ as our daughter grew up.
Our daughter Megan was 18 months old when Multiple Sclerosis changed our lives. Progressing MS symptoms have highlighted yearly the difference in her mother daughter relationship from anyone she has ever known.
15 years ago, confronted with the task of making a home made Mother’s day card, our then 6 yr old daughter used her different point of view to hit one out of the park.
http://www.youtube.com/watch?v=L0sUNNhyH6o
While Patti and I always worried about the impact of MS on raising a child, here was Megan addressing both her Mom’s visual impairment through video which could be viewed on a larger TV screen and her Mom missing her (Patti was having a particularly bad spell and staying with her folks). Childhood alchemy changing anxiety into hope.
Never underestimate different points of view.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Thursday, May 14, 2009
knee contractures Multiple Sclerosis
Knee contractures are more than a Multiple Sclerosis symptom; they affect Patti’s opportunity to participate in life.
In the wheelchair era of Multiple Sclerosis changes occur in the surrounding muscle, tendons and ligaments of the knees which make the legs stiffer to bend and straighten. Knee contractures impair transferring because legs essentially tuck up under a person rather than extending.
From a caregiver’s perspective the safer and easier transfer of Patti from her wheelchair to bed, scooter, non-accessible seating, or whatever by simply helping her to stand and pivot equals outings and involvement.
When dead lifting her is necessitated because of knee contractures not only are both of us are at risk but her world shrinks.
Patti can be a genuine b*tch (“and proud of it” in her own words) about physical therapy.
A saint of a new therapist persists with Patti and changed the modalities of therapy:
Legs are manually manipulated and stretched. SoftPro Static Gel Knee Orthosis are applied and supported with an ottoman like cushion while Patti is still in her wheel chair. A nap wearing the soft pro braces closes out the routine.
previous related entries:
10/21/08 Multiple Sclerosis knee contractures
08/12/08 memory loss and knee contracture
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
In the wheelchair era of Multiple Sclerosis changes occur in the surrounding muscle, tendons and ligaments of the knees which make the legs stiffer to bend and straighten. Knee contractures impair transferring because legs essentially tuck up under a person rather than extending.
From a caregiver’s perspective the safer and easier transfer of Patti from her wheelchair to bed, scooter, non-accessible seating, or whatever by simply helping her to stand and pivot equals outings and involvement.
When dead lifting her is necessitated because of knee contractures not only are both of us are at risk but her world shrinks.
Patti can be a genuine b*tch (“and proud of it” in her own words) about physical therapy.
A saint of a new therapist persists with Patti and changed the modalities of therapy:
In my opinion the results have been phenomenal, seemingly setting the clock back several years when it comes to transferring.
While PT cannot last forever, the nap with ortho braces is to be written into the nursing plan. ANY nap that is written into a care plan is a plus with Multiple Sclerosis care.
Additionally occupational therapy will next evaluate Patti for modifications to her wheelchair and/or a new wheelchair to focus on improving leg extension and posture.
A plus to the care facility era is that medical care surrounds you from aides for attended activities of daily living to nursing staff to doctors visiting you to ‘down the hall’ therapy.
Please always remember that the pluses are in large part driven by YOU. You must insure that a specific Multiple Sclerosis oriented care plan is in effect. Most important of all YOU, FAMILY, AND FRIENDS must remain involved and supporting.
previous related entries:
10/21/08 Multiple Sclerosis knee contractures
08/12/08 memory loss and knee contracture
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Sunday, May 10, 2009
a Mother's Day reflection
While I do not remember the scalpel slicing through the womb and being dragged into the world that is where my Mother’s Day begins.
Just because I had the good manners to sit upright and face forward I had already been zapped a couple times with x-rays and labeled a complete breech.
My Mother was a daughter of old world immigrants, her Mom from Ireland, her Dad from Wales.
Traditional values seem confusing today. You became a quick learner in the right and wrong department after a couple whacks across your butt with a belt. You only whined “I’m bored” once, because you were handed a list of chores. Threats of being left with the “Pineys” and eaten by the “New Jersey Devil” instantly stopped backseat squabbles between my brother and me on long car rides.
While traditional my Mom also inspired independence. She worked nights to balance parenting and her career as a psychiatric nurse.
Her career blended interesting insights into parenting. My Mom observed one of my earliest experiments in shaving and remarked that only child molesting, psycho killers shave that way. I still smile most mornings when remembering.
“Don’t cry, crying only lets them know they got to you.” To this day, I am not exactly sure who them and they are or what this means but I have stuck with this maternal advice.
Faith and religion were not optional activities. Being Irish Catholic was as necessary as food, shelter, and sleep. I ate so many fish sticks on Fridays I am traumatized by tartar sauce.
Through it all, love was unequivocal. That is the single most important lesson from my Mom. Well, that and the lilt of Irish laughter.
My Mom struggled her final years following a massive stroke. One January afternoon in 1997 I visited with her while my Dad had a doctor’s appointment.
That afternoon was surreal. My Mom was more lucid than in a decade. She asked me to read some of her favorite Bible passages and we got to talking about everything and anything. Yapping away more like two old friends than mother and son.
I thank God for that last memory and time together, as I would never see nor talk with her again.
Years later, I found a book of poetry she had given me decades earlier for my 30th birthday (which I had never even opened). I failed miserably in the ‘don’t cry’ lesson as I opened the book and read in her handwriting:
Just because I had the good manners to sit upright and face forward I had already been zapped a couple times with x-rays and labeled a complete breech.My Mother was a daughter of old world immigrants, her Mom from Ireland, her Dad from Wales.
Traditional values seem confusing today. You became a quick learner in the right and wrong department after a couple whacks across your butt with a belt. You only whined “I’m bored” once, because you were handed a list of chores. Threats of being left with the “Pineys” and eaten by the “New Jersey Devil” instantly stopped backseat squabbles between my brother and me on long car rides.
While traditional my Mom also inspired independence. She worked nights to balance parenting and her career as a psychiatric nurse.
Her career blended interesting insights into parenting. My Mom observed one of my earliest experiments in shaving and remarked that only child molesting, psycho killers shave that way. I still smile most mornings when remembering.
“Don’t cry, crying only lets them know they got to you.” To this day, I am not exactly sure who them and they are or what this means but I have stuck with this maternal advice.
Faith and religion were not optional activities. Being Irish Catholic was as necessary as food, shelter, and sleep. I ate so many fish sticks on Fridays I am traumatized by tartar sauce.
Through it all, love was unequivocal. That is the single most important lesson from my Mom. Well, that and the lilt of Irish laughter.
My Mom struggled her final years following a massive stroke. One January afternoon in 1997 I visited with her while my Dad had a doctor’s appointment.
That afternoon was surreal. My Mom was more lucid than in a decade. She asked me to read some of her favorite Bible passages and we got to talking about everything and anything. Yapping away more like two old friends than mother and son.
I thank God for that last memory and time together, as I would never see nor talk with her again.
Years later, I found a book of poetry she had given me decades earlier for my 30th birthday (which I had never even opened). I failed miserably in the ‘don’t cry’ lesson as I opened the book and read in her handwriting:
“To Pat,
Walk easy on the Earth!!
Your Mother”
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
Saturday, May 02, 2009
cluster headaches aka suicide headaches
They’re baaack …
It has been a 22 month reprieve for me but as they have for 20 years an episode of Cluster Headaches again rules my daily life.
"Suicide headaches" was the earliest attempt to describe the severity of cluster headaches being able ‘to take normal men and force them to commit suicide’.
Women with cluster headaches describe the pain as worse than giving birth. Imagine giving birth above your eye without anesthetic 2 or 3 times a day, for eight weeks at a time.
Debilitating, disabling, and beyond any definition of pain they become your life for the duration of the episode.
Since my last episode I was surprised to discover the pioneering of videos related to Cluster Headaches on You Tube. This first video is a most creative attempt using the music video format to explain cluster headaches.
http://www.youtube.com/watch?v=dm1Xi1a39dk
This second is REALITY and takes guts to watch. It takes even more guts to leave a camera on and capture what happens as the hell from a cluster headache destroys you.
http://www.youtube.com/watch?v=LAf_QFmTPkw
I writhed as I watched knowing too many years of such attacks. To avoid waking anyone, I have learned to chew on towels and scream into pillows. IF God is in a merciful mood I black out at the peak of pain and awaken later on the floor. Sadly, rarely is God merciful.
Soon sleep deprivation is in a neck to neck race with pain. I live trying for brief cat naps.
Through two decades of episodes while spouse caregiving for Multiple Sclerosis and parenting a child through infant to adult, human empathy from others was inherent. Family sees pain and results in caring unspoken adjustments in their own needs and behaviors.
New to this episode is living with Autism in our home. From what I have observed of Autism there is no awareness of another, nor resulting empathy for anyone else.
The time ahead will certainly test Friedrich Nietzsche’s, “What does not destroy me, makes me stronger.”
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
It has been a 22 month reprieve for me but as they have for 20 years an episode of Cluster Headaches again rules my daily life.
"Suicide headaches" was the earliest attempt to describe the severity of cluster headaches being able ‘to take normal men and force them to commit suicide’.
Women with cluster headaches describe the pain as worse than giving birth. Imagine giving birth above your eye without anesthetic 2 or 3 times a day, for eight weeks at a time.
Debilitating, disabling, and beyond any definition of pain they become your life for the duration of the episode.
Since my last episode I was surprised to discover the pioneering of videos related to Cluster Headaches on You Tube. This first video is a most creative attempt using the music video format to explain cluster headaches.
http://www.youtube.com/watch?v=dm1Xi1a39dk
This second is REALITY and takes guts to watch. It takes even more guts to leave a camera on and capture what happens as the hell from a cluster headache destroys you.
http://www.youtube.com/watch?v=LAf_QFmTPkw
I writhed as I watched knowing too many years of such attacks. To avoid waking anyone, I have learned to chew on towels and scream into pillows. IF God is in a merciful mood I black out at the peak of pain and awaken later on the floor. Sadly, rarely is God merciful.
Soon sleep deprivation is in a neck to neck race with pain. I live trying for brief cat naps.
Through two decades of episodes while spouse caregiving for Multiple Sclerosis and parenting a child through infant to adult, human empathy from others was inherent. Family sees pain and results in caring unspoken adjustments in their own needs and behaviors.
New to this episode is living with Autism in our home. From what I have observed of Autism there is no awareness of another, nor resulting empathy for anyone else.
The time ahead will certainly test Friedrich Nietzsche’s, “What does not destroy me, makes me stronger.”
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
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