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 ...
Friday, May 15, 2009
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 ...
Tuesday, April 28, 2009
roaming the streets in a wheelchair / JUBILEE DAY
Baked by a couple 90°F+ (32.2 °C+) summer days in April, we found ourselves thinking ahead to Jubilee Day.
Unlike the “Roaring 20’s” of the Great Gatsby here in South Central Pennsylvania the Mechanicsburg
Borough Council decided to create an affair held during the June lull in farmer’s work that local residents “would not forget.” Blocking off several blocks of Main Street for Merchants and Farmers Day they let visitors “roam the streets”.
They stumbled onto one of the more wheelchair accessible events possible, pedestrian only streets.
Today known as “Jubilee Day”, that first ‘roaming of the streets’ has grown to 60,000 visitors and the largest one-day street fair in the Eastern United States.
For perspective keep in mind that Mechanicsburg has a population of less than 9,000.
Neither the armies of the Confederacy nor Hollywood have rivaled Jubilee Day crowds.
Packed into the less than a mile of blocked streets, tens of thousands of people do not exactly ‘roam’. A wheelchair may as well be swallowed by a boa constrictor of human beings.
Obstacles tend to challenge us more than deter us and we soon discovered early morning of Jubilee Day. The hour before
“official” starting time, summer temps are Multiple Sclerosis friendly, refreshingly cool and streets are less congested for wheelchair maneuvering. Most vendors are open and glad to give you their time.
One of the quirks of a street fair is that shopping is wheelchair accessible since it is set up on folding tables unlike a retail store where shopping is designed for standing people. Patti loves being able to actually see and touch items and chat in the give and take of street fair sales.
In its 81st year, Jubilee Day is on-line at Jubilee Day 2009, and can be ‘your friend’ on Facebook at Jubilee Day and Gotta Love Jubilee Day.
You can view OUR related videos at:
Jubilee Day 2007 (1 min)
Jubilee Day 2008 (wheelchair view) 3 min
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Unlike the “Roaring 20’s” of the Great Gatsby here in South Central Pennsylvania the Mechanicsburg
Borough Council decided to create an affair held during the June lull in farmer’s work that local residents “would not forget.” Blocking off several blocks of Main Street for Merchants and Farmers Day they let visitors “roam the streets”.They stumbled onto one of the more wheelchair accessible events possible, pedestrian only streets.
Today known as “Jubilee Day”, that first ‘roaming of the streets’ has grown to 60,000 visitors and the largest one-day street fair in the Eastern United States.
For perspective keep in mind that Mechanicsburg has a population of less than 9,000.
Neither the armies of the Confederacy nor Hollywood have rivaled Jubilee Day crowds.
* During the US Civil War, Mechanicsburg was the northernmost town to be captured and occupied by the Confederate Army.
* If you watched the film, “Girl Interrupted” you have unbeknownst already visited Mechanicsburg. The ice cream parlor scene was filmed in Eckels' Drug Store on Main Street.
Packed into the less than a mile of blocked streets, tens of thousands of people do not exactly ‘roam’. A wheelchair may as well be swallowed by a boa constrictor of human beings.
Obstacles tend to challenge us more than deter us and we soon discovered early morning of Jubilee Day. The hour before
“official” starting time, summer temps are Multiple Sclerosis friendly, refreshingly cool and streets are less congested for wheelchair maneuvering. Most vendors are open and glad to give you their time.One of the quirks of a street fair is that shopping is wheelchair accessible since it is set up on folding tables unlike a retail store where shopping is designed for standing people. Patti loves being able to actually see and touch items and chat in the give and take of street fair sales.
In its 81st year, Jubilee Day is on-line at Jubilee Day 2009, and can be ‘your friend’ on Facebook at Jubilee Day and Gotta Love Jubilee Day.
You can view OUR related videos at:
Jubilee Day 2007 (1 min)
Jubilee Day 2008 (wheelchair view) 3 min
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Monday, April 27, 2009
caregiving: swine flu - when pigs fly
When it comes to all things swine perhaps the best advice is 
from one wise spider to one ‘terrific’ pig:
from one wise spider to one ‘terrific’ pig:Charlotte: “Trust me, Wilbur. People are very gullible. They'll believe anything they see in print.”
U.S. Homeland Security issues a public health emergency order regarding swine flu outbreak.
Today the European Union is warning Europeans to avoid traveling to the United States or Mexico.
World stock markets are freaking out, even as investors are gobbling up shares of flu drug makers. “Follow the money!”
What is going on? … When did Homeland Security get into public health? Buy your duct tape now!
Anyone remember 1976, when the CDC called on President Ford and Congress to begin mass inoculations for swine flu?
Swine flu ‘panic’ has been more dangerous than swine flu in the United States.
40 million Americans received the swine flu vaccine before the program was halted after only 10 weeks. 25 people died after receiving the vaccine and more than 500 people developed Guillain-Barre syndrome.
Ultimately only 200 cases of swine flu were ever reported with one fatality in the US.
Today in this over communication age panic can get disturbing with self help guides for “Preparing for Pandemic Flu”, with such helpful hints as home safety kits including “deterrents (mace, pepper spray, etc.)”, and for your car - an air horn and a Taser.
Madness, absolute madness!
As a Multiple Sclerosis spouse caregiver I am in no way making light of any health risk, but there is an ocean of difference between vigilance and media frenzy. Dealing day in and day out with an out of whack immune system from MS, vigilance and common sense is ALWAYS required.
If you have symptoms of flu, talk to your health care provider right away. Swine flu can be treated with antiviral medications, but treatment must be started within the first 48 hours after symptoms appear.
Even better step up the common sense tips to stay healthy and avoid the rush to panic.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
Friday, April 24, 2009
caregiving: stand by me
Caregiving is all about standing by another. Some days you just have to put all the trying to understand, trying to do it better, trying in general and just kick back for a couple minutes and enjoy a little toe tapping joyous music about standing by one another.
There are a zillion versions of “Stand By Me” but somehow the “heart” of this compilation version by street performers from around the world is heads above the rest.
Playing For Change: Song Around the World "Stand By Me"
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
There are a zillion versions of “Stand By Me” but somehow the “heart” of this compilation version by street performers from around the world is heads above the rest.
Playing For Change: Song Around the World "Stand By Me"
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Monday, April 20, 2009
2009 MS Walk, Camp Hill, PA
Sunday morning people flock together for all kind of reasons from religion to sports to flea markets. It is always fun and inspiring to be part of a gathering of people, family, and friends brought together around living with Multiple Sclerosis.
Partly cloudy and 60°F (15.6 °C) the weather was a blessing for the 20th Anniversary of NMSS Central Pennsylvania Chapter’s MS Walk.
Interestingly, I observed more wheelchairs being pushed and electric mobility than ever before at the 2009 MS Walk at Camp Hill, PA.
“Patti’s Pride” team more than doubled its fundraising goal thanks to so many wonderful people. THANK YOU all!!
Take a minute and visit.
MS WALK 2009, CAMP HILL, PA
Fundraising is only part of what any MS Walk is about for those living with Multiple Sclerosis. For one Sunday morning a year, YOU and AWARENESS of MS are what people come together over. That sense of community even the briefest taste can be soooo refreshingly exhausting!
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Partly cloudy and 60°F (15.6 °C) the weather was a blessing for the 20th Anniversary of NMSS Central Pennsylvania Chapter’s MS Walk.
Interestingly, I observed more wheelchairs being pushed and electric mobility than ever before at the 2009 MS Walk at Camp Hill, PA.
“Patti’s Pride” team more than doubled its fundraising goal thanks to so many wonderful people. THANK YOU all!!
Take a minute and visit.
MS WALK 2009, CAMP HILL, PA
Fundraising is only part of what any MS Walk is about for those living with Multiple Sclerosis. For one Sunday morning a year, YOU and AWARENESS of MS are what people come together over. That sense of community even the briefest taste can be soooo refreshingly exhausting!
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Saturday, April 18, 2009
a motley mosaic / Multiple Sclerosis vision
Part optic neuritis, part nystagmus, part MS demyelinated short-circuited communication between brain and eye, and part guesswork, … Patti basically ‘sees’ as if an image were a motley mosaic with some pieces missing and other pieces at varying depths, varying sharpness/blurriness, and varying intensity of color.
Or at least this is what I learned one fascinating visit with Patti to an ophthalmologist over a decade ago.
Rescheduling his other appointments
and with Patti’s permission he invited several colleagues along with myself in to observe through his gadgets and machines what he called “MS Vision”!
Any artist representation is only as good as the artist, and yes, you Patrick are NO artist. At best it is an attempt to capture the motley mosaic of Multiple Sclerosis vision. (Click picture to enlarge)
He also had a ‘theory’ he shared that day that clues manifest years earlier and could be ‘seen’ in family photos with a progressing history of one eye closed. He bemoaned that such photos are usually thrown away as they are of course not flattering and therefore any such pattern would not be noticed.
Back in the pre-digital age you often got 2 sets for 1 when developed. For who knows why we had a tub of those old second sets, and sure enough there they were … candid pics of Patti from “pre-MS’ increasingly with one eye closed. Eerie!
Or at least this is what I learned one fascinating visit with Patti to an ophthalmologist over a decade ago.
Rescheduling his other appointments
and with Patti’s permission he invited several colleagues along with myself in to observe through his gadgets and machines what he called “MS Vision”!Any artist representation is only as good as the artist, and yes, you Patrick are NO artist. At best it is an attempt to capture the motley mosaic of Multiple Sclerosis vision. (Click picture to enlarge)
He also had a ‘theory’ he shared that day that clues manifest years earlier and could be ‘seen’ in family photos with a progressing history of one eye closed. He bemoaned that such photos are usually thrown away as they are of course not flattering and therefore any such pattern would not be noticed.
Back in the pre-digital age you often got 2 sets for 1 when developed. For who knows why we had a tub of those old second sets, and sure enough there they were … candid pics of Patti from “pre-MS’ increasingly with one eye closed. Eerie!
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
Sunday, April 12, 2009
a caregiving Easter
Easter Sunday at a care facility is an anomaly. Parking lot full, sounds of children playing, families together. Wouldn’t it be nice if every Sunday was like this?
With progression of Patti’s Multiple Sclerosis related optic neuritis and visual impairment (legally blind) shopping for gifts
has evolved from challenging to strangely fun. I push her around a store until two requirements are met. First, she can actually “see” it; second, it fits on her lap.
No Easter baskets, flowers, frankincense, or myrr from us!
After an Easter Sunday feast with Patti’s family, it was off to City Island to get in a couple miles of practice laps for the MS Walk next Sunday.
Pushing a wheelchair or better yet 160 lbs (145 Patti +15 chair) over 3-4 miles of neighborhood sidewalks and streets is
not exactly something I pull out of the hat once each year. We TRAIN!!
Unless you have actually spent time in a wheelchair you may be surprised that even being pushed over that distance up and down curb cuts and bumping over uneven sidewalks takes training.
By 4:30 in the afternoon Patti wanted nothing more in the world than to “go to bed”.
Pennsylvania, Camp Hill - walk MS: Central PA 2009
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
With progression of Patti’s Multiple Sclerosis related optic neuritis and visual impairment (legally blind) shopping for gifts
has evolved from challenging to strangely fun. I push her around a store until two requirements are met. First, she can actually “see” it; second, it fits on her lap.No Easter baskets, flowers, frankincense, or myrr from us!
After an Easter Sunday feast with Patti’s family, it was off to City Island to get in a couple miles of practice laps for the MS Walk next Sunday.
Pushing a wheelchair or better yet 160 lbs (145 Patti +15 chair) over 3-4 miles of neighborhood sidewalks and streets is
not exactly something I pull out of the hat once each year. We TRAIN!!Unless you have actually spent time in a wheelchair you may be surprised that even being pushed over that distance up and down curb cuts and bumping over uneven sidewalks takes training.
By 4:30 in the afternoon Patti wanted nothing more in the world than to “go to bed”.
Pennsylvania, Camp Hill - walk MS: Central PA 2009
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Saturday, April 11, 2009
the carousel
As I am only a story teller, I thought I would drag some poets in to help with this entry.
Previously in, “Caregiving on the Conodoguinet” an outing stumbled into both 'the now' and a part of Patti's 'long ago then'. There was something about a thread of synchronicity I could not get out of my head.
Generations including Patti’s parents and later their family were part of the history of this hand carved Carousel from Willow Mill Amusement Park, pictured above.
Idyllic times yield to forces of nature, such as hurricanes and MS exacerbations.
Hurricane Agnes in 1972 would flood the meandering Conodoguinet Creek to 17 ft, drowning the carousel along with the amusement park.
Never fully recovering Willow Mill Amusement Park closed in 1989 after 60 years. The carousel was sold to Bushkill Park in Easton, PA.
That SAME year Patti was hospitalized with her first MS exacerbation … 'never fully recovering'.
Little did we know that drowned below the pictured flood water was the exact SAME carousel intertwining lives.
Squeals of laughter now only ride on the zephyr of memory.
Yet the 'place' where it began, Willow Mill Park, lives on as an “accessible” municipal park still serving kids and families ... and yes, Patti still "rolls" on though now teamed with a spouse caregiver pushing here and there.
'Forces of nature' do reshape the land and even people but not the hearts of kids who are too old to be kids at all.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Previously in, “Caregiving on the Conodoguinet” an outing stumbled into both 'the now' and a part of Patti's 'long ago then'. There was something about a thread of synchronicity I could not get out of my head.
“Pondering horses on circular courses
A purpose with nowhere to go”Carousel (Revised) by Pablo Cruise
Generations including Patti’s parents and later their family were part of the history of this hand carved Carousel from Willow Mill Amusement Park, pictured above.
“I sat upon a painted horse,
And I went round and round
And up and down, and up and down,
To the hurdy-gurdy sound.”On The Carousel by Ilo Orleans
Idyllic times yield to forces of nature, such as hurricanes and MS exacerbations.
Hurricane Agnes in 1972 would flood the meandering Conodoguinet Creek to 17 ft, drowning the carousel along with the amusement park.
Never fully recovering Willow Mill Amusement Park closed in 1989 after 60 years. The carousel was sold to Bushkill Park in Easton, PA.
That SAME year Patti was hospitalized with her first MS exacerbation … 'never fully recovering'.
“You hope this ride will last forever, you know it never will. … In life just like the carousel..... there's not another ride … never is in black and white, real life and dreams collide.” Carousel by Urban Legend15 years later our daughter and myself driving through the flood damage from Hurricane Ivan crossed the Delaware River at Easton, PA.
Little did we know that drowned below the pictured flood water was the exact SAME carousel intertwining lives.
Squeals of laughter now only ride on the zephyr of memory.
Yet the 'place' where it began, Willow Mill Park, lives on as an “accessible” municipal park still serving kids and families ... and yes, Patti still "rolls" on though now teamed with a spouse caregiver pushing here and there.
'Forces of nature' do reshape the land and even people but not the hearts of kids who are too old to be kids at all.
“Tilt your head let the breeze kiss your face, always remember this wonderful place.” Carousel by Karen Palumbo
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Monday, April 06, 2009
accessibility / bullying and bullsh#t
Les Expéndables (Prologue 2009, vallée de cumberland) Patti, Patrick, and Megan arrive to attend "Les Misérables".
Mme. Bull Merdler: “Do you know what seats you have”
Patrick: (Thinking this an odd question since holding printed tickets.) “Yes, wheelchair seats 1, 2, and 3”
Mme. Bully-ardo: “See, THIS is the problem! There should only be only TWO tickets!!! ONE wheelchair and ONE companion seat!”
Patrick: “Since when does a person in a wheelchair have ONLY one friend or one family member? The box office sold us three tickets in the wheelchair seating section.”
Mme. Bull Merdler: “Your third ticket can sit back here in the aisle and you two can switch at intermission.”
Seeing that Patti's MS related mental confusion was overwhelmed and our daughter (the third ticket) was giving me the glare of 'do not go ballistic on them with me standing next to you', I let it all settle for a moment.
Sitting next to me and occupying all the rest of the wheelchair section were several sheepish looking grand dames (none in a wheelchair nor visibly disabled). The woman adjacent to me leans over and apologizes explaining that where they are sitting are not their seats but Mme. Bully-ardo told them to sit there, “it was OK”.
Noticing Mmes. Bully-ardo and Bull Merdler huddling nearby I stood up and ‘engaged’ them. Surrounding us displaced in the aisle were a young man in a wheelchair with what I guessed was CP and companion, a woman who could not carry her portable oxygen up to her seat, a woman trying to maintain the security of the proximity of her high tech walker and too many more real life “les miserables?”.
With 35 years experience in the entertainment business, 20 years experience in caregiving, and having attended yearly performances at this theatre since it was built I was the wrong person to tag team with bull sh#t, and bullying.
I suggested that perhaps this unacceptable situation may not have occurred had the additional wheelchair seating in the orchestra seats NOT been sold to able bodied people.
Mme. Bully-ardo: “There is NO wheelchair seating closer to the stage.
Patrick: (gesturing toward aisle seats nearer the stage with white wheelchairs painted on them) “Since the theatre was built, those seats were designed and sold for wheelchair patrons.
Mme. Bully-ardo: “Well, we CANNOT” remove a seat just for a wheelchair.”
Patrick: “You do not have to. The armrests lift to accommodate transfer.”
Mme. Bull Merdler: “I am the theatre manager. YOU are not aware of the fire laws.”
Mme. Bully-ardo: “That’s right!
Patrick: “This theatre was built both fire law and ADA compliant.”
Mme. Bully-ardo: “A ‘wheelchair person' would trap everyone else in the aisle”!
Patrick: “Those seats were specifically built on the inside aisle seat. People exit OUT to fire exits not to the center of a theatre in case of fire.”
Mme. Bull Merdler: “Uh, they are NEW fire laws!”
Mme. Bully-ardo: “That’s right!”
One thing and only one thing changed, this dynamic duo either for their own gain or incompetence sold designated accessible seating to general sale.
Obviously nothing could be corrected at a sold out performance. Yet some times you just have to jawbone and even kick a little proverbial dirt on authority’s shoes to get in their thick self-centered heads.
Bullying and bull sh#t are too often the dual faces of theatre confronting disability attendance.
Disabled, elderly, or infirmed patrons are not “les expendables”!
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Mme. Bull Merdler: “Do you know what seats you have”
Patrick: (Thinking this an odd question since holding printed tickets.) “Yes, wheelchair seats 1, 2, and 3”
Mme. Bully-ardo: “See, THIS is the problem! There should only be only TWO tickets!!! ONE wheelchair and ONE companion seat!”
Patrick: “Since when does a person in a wheelchair have ONLY one friend or one family member? The box office sold us three tickets in the wheelchair seating section.”
Mme. Bull Merdler: “Your third ticket can sit back here in the aisle and you two can switch at intermission.”
Seeing that Patti's MS related mental confusion was overwhelmed and our daughter (the third ticket) was giving me the glare of 'do not go ballistic on them with me standing next to you', I let it all settle for a moment.
Sitting next to me and occupying all the rest of the wheelchair section were several sheepish looking grand dames (none in a wheelchair nor visibly disabled). The woman adjacent to me leans over and apologizes explaining that where they are sitting are not their seats but Mme. Bully-ardo told them to sit there, “it was OK”.
Noticing Mmes. Bully-ardo and Bull Merdler huddling nearby I stood up and ‘engaged’ them. Surrounding us displaced in the aisle were a young man in a wheelchair with what I guessed was CP and companion, a woman who could not carry her portable oxygen up to her seat, a woman trying to maintain the security of the proximity of her high tech walker and too many more real life “les miserables?”.
With 35 years experience in the entertainment business, 20 years experience in caregiving, and having attended yearly performances at this theatre since it was built I was the wrong person to tag team with bull sh#t, and bullying.
I suggested that perhaps this unacceptable situation may not have occurred had the additional wheelchair seating in the orchestra seats NOT been sold to able bodied people.
Mme. Bully-ardo: “There is NO wheelchair seating closer to the stage.
Patrick: (gesturing toward aisle seats nearer the stage with white wheelchairs painted on them) “Since the theatre was built, those seats were designed and sold for wheelchair patrons.
Mme. Bully-ardo: “Well, we CANNOT” remove a seat just for a wheelchair.”
Patrick: “You do not have to. The armrests lift to accommodate transfer.”
Mme. Bull Merdler: “I am the theatre manager. YOU are not aware of the fire laws.”
Mme. Bully-ardo: “That’s right!
Patrick: “This theatre was built both fire law and ADA compliant.”
Mme. Bully-ardo: “A ‘wheelchair person' would trap everyone else in the aisle”!
Patrick: “Those seats were specifically built on the inside aisle seat. People exit OUT to fire exits not to the center of a theatre in case of fire.”
Mme. Bull Merdler: “Uh, they are NEW fire laws!”
Mme. Bully-ardo: “That’s right!”
One thing and only one thing changed, this dynamic duo either for their own gain or incompetence sold designated accessible seating to general sale.
Obviously nothing could be corrected at a sold out performance. Yet some times you just have to jawbone and even kick a little proverbial dirt on authority’s shoes to get in their thick self-centered heads.
Bullying and bull sh#t are too often the dual faces of theatre confronting disability attendance.
Disabled, elderly, or infirmed patrons are not “les expendables”!
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Thursday, April 02, 2009
to walk or not to walk
Fundraising has become as much a part of Spring as flowers and showers.
“showy fundraiser walks, … upbeat copy about how you’ll be ‘making a difference’ or ‘bringing hope’ or ‘changing lives’. It all sounds great, I know, but my advice is “don’t walk”.”
Duncan Cross “Don’t Walk”
"I, for one, used to donate to MS charities. … I like to support charities where I can actually see my support making a difference --- today! Because suffering - today -- is what needs assistance, in my opinion."
Disabled Not Dead “Numbers Game”
Excellent questions and concerns about organizational fundraising are raised in the above entries. In our story, we NEVER participated in a MS Walk for the first 20 years of Patti’s diagnosis. Why? In the beginning, NMSS was simply NOT friendly to those with progressive MS.
Surprisingly and suddenly 4 years ago Patti remarked that she wanted to attend a MS Walk and we have been participating since (I push, she rolls).
By participating we discovered that NMSS had become friendlier to ‘living with MS’ not just ‘a race for the cure’. Today a NMSS assistance grant helps us to afford our wheelchair accessible van which in turn dramatically impacts the freedom of Patti’s daily life.
Progressive MS does get the short end of the stick, I suspect, because it is not ‘seen’.
It is a challenge to get Patti out and about. So when a grocery chain raises money for MS by asking at checkout if you would like to donate a dollar to MS, it can get interesting asking Patti and I that question depending on who answers first. (If I were to quote Patti's answers this would have to be an 'adult only' entry.) Clerks always LEARN more than a dollar’s worth about MS.
Fundraising walks and awareness rallies also create a brief sense of community. Let’s face it, any chronic illness or disease is isolating. While not everyone will agree with the course of any organization, for a couple hours it is refreshing to be around others ‘like’ yourself. Certainly not identical, maybe not even similar, but there are enough shared experiences, fears, hopes, and laughs to go around.
Patti's Pride: Central PA 2009 Walk MS Camp Hill, PA - April 19
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
“showy fundraiser walks, … upbeat copy about how you’ll be ‘making a difference’ or ‘bringing hope’ or ‘changing lives’. It all sounds great, I know, but my advice is “don’t walk”.”
Duncan Cross “Don’t Walk”
"I, for one, used to donate to MS charities. … I like to support charities where I can actually see my support making a difference --- today! Because suffering - today -- is what needs assistance, in my opinion."
Disabled Not Dead “Numbers Game”
Excellent questions and concerns about organizational fundraising are raised in the above entries. In our story, we NEVER participated in a MS Walk for the first 20 years of Patti’s diagnosis. Why? In the beginning, NMSS was simply NOT friendly to those with progressive MS.
Surprisingly and suddenly 4 years ago Patti remarked that she wanted to attend a MS Walk and we have been participating since (I push, she rolls).
By participating we discovered that NMSS had become friendlier to ‘living with MS’ not just ‘a race for the cure’. Today a NMSS assistance grant helps us to afford our wheelchair accessible van which in turn dramatically impacts the freedom of Patti’s daily life.
Progressive MS does get the short end of the stick, I suspect, because it is not ‘seen’.
It is a challenge to get Patti out and about. So when a grocery chain raises money for MS by asking at checkout if you would like to donate a dollar to MS, it can get interesting asking Patti and I that question depending on who answers first. (If I were to quote Patti's answers this would have to be an 'adult only' entry.) Clerks always LEARN more than a dollar’s worth about MS.
Fundraising walks and awareness rallies also create a brief sense of community. Let’s face it, any chronic illness or disease is isolating. While not everyone will agree with the course of any organization, for a couple hours it is refreshing to be around others ‘like’ yourself. Certainly not identical, maybe not even similar, but there are enough shared experiences, fears, hopes, and laughs to go around.
Patti's Pride: Central PA 2009 Walk MS Camp Hill, PA - April 19
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Tuesday, March 31, 2009
a caregiver reflects on the R-Word
As a caregiver you are both a shield against 'others' and an educator to 'others' especially when the person you care for is never unattended.
Special Olympics unquestionably edgy campaign to end the R-Word today, 03.31.09 frankly is confusing to me.
Long ago in a language no longer spoken the Latin word for slow, tardus, would eventually evolve to many variations of the R-WORD.
Trying to draw attention to correct language usage is a tough line to walk at the risk of political correctness in absurdum.
Oddly the Special Olympic promotional videos depict people using the R-Word as teenage ‘who’s in’ or ‘who’s out’ slang of social status or cliques not directed at or intended to hurt anyone with mental retardation.
To me, a concern with such a campaign is that others are inadvertently painted with the same brush. State departments of Mental Retardation and The ARC of the United States (aka Association for Retarded Citizens) greatly benefit and assist those who need their help.
Mental Retardation is a medical diagnosis and people and families NEED help. Lacking adaptive skills or the abilities to speak and understand, a person can be overwhelmed by the simple tasks of everyday life. In living with Autism, Mental Retardation can be comorbid for some.
Yes, I used an IQ based graph for a visual to DEMONSTRATE the impact of mental retardation. MOST reading this fall between the two tallest blue and green bar ranges.
I created the inserts for Mental Retardation from Assessment Psychology Online and for Austim Spectrum from Autism, IQ, and the Stanford–Binet.
Maybe I just do not get the bigger picture or am just too pragmatic in these economically challenged times but millions spent over words could have helped some people and families in need.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders...
Monday, March 30, 2009
Caring, Care Facility, Desecration
My heart and prayers go out to all those living with Sunday’s desecration of CARE at Pinelake Health and Rehab.
From the News & Observer of Raleigh, North Carolina:
8 KILLED AT CARTHAGE REST HOME
Jerry Avant, a registered nurse, was killed in the shooting, shot more than two dozen times. "He undoubtedly saved a lot of lives", Avent's father called his son a "good boy" who "really loved nursing."
Carthage Police Officer Justin Garner, who was the first officer to arrive on the scene, exchanged gunfire with the gunman in a hallway. Officer Garner suffered a gunshot wound to his leg during the shoot-out before wounding the gunman and ending the carnage.
Sunday, in our corner of the care facility universe, Patti was having a challenging day with Multiple Sclerosis symptoms of short term memory loss, cognitive impairment and fatigue. She was more cantankerous than aware of any news and world events.
An outing of Chinese carry-out with her parents, brother, and me … plus ‘ciggies’ made for a world of a different Sunday for her.
Caring will go on because it must go on!
From the News & Observer of Raleigh, North Carolina:
8 KILLED AT CARTHAGE REST HOME
Jerry Avant, a registered nurse, was killed in the shooting, shot more than two dozen times. "He undoubtedly saved a lot of lives", Avent's father called his son a "good boy" who "really loved nursing."
Carthage Police Officer Justin Garner, who was the first officer to arrive on the scene, exchanged gunfire with the gunman in a hallway. Officer Garner suffered a gunshot wound to his leg during the shoot-out before wounding the gunman and ending the carnage.Sunday, in our corner of the care facility universe, Patti was having a challenging day with Multiple Sclerosis symptoms of short term memory loss, cognitive impairment and fatigue. She was more cantankerous than aware of any news and world events.
An outing of Chinese carry-out with her parents, brother, and me … plus ‘ciggies’ made for a world of a different Sunday for her.
Caring will go on because it must go on!
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
Friday, March 27, 2009
Guide for Uninsured Multiple Sclerosis Patients
“Having Multiple Sclerosis and no insurance — or inadequate insurance — is a bitter pill to swallow. … Like it or not, MS and money go hand in hand.”
GUIDE FOR UNINSURED MULTIPLE SCLEROSIS PATIENTS
A shout out from Caregivingly Yours to MS Maze for the above most excellent and timely guide.
Beyond NO insurance or inadequate insurance, LOSS of insurance is increasingly haunting families living with chronic illnesses.
"As the economic crisis worsens … the number of uninsured citizens will grow. In February 2009, more than eight percent of Americans were unemployed and 1.1 million of them will become uninsured with each one percent increase in unemployment.” Sen. Edward Kennedy (D-MA)
One thing for sure about trickle down theories, shi#t does trickle down on those that can least afford it.
Exhaust the ‘guide’ ideas for help. Gambling with your health by medication skipping, ignoring symptoms or such is not the wisest course.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
GUIDE FOR UNINSURED MULTIPLE SCLEROSIS PATIENTS
A shout out from Caregivingly Yours to MS Maze for the above most excellent and timely guide.
Beyond NO insurance or inadequate insurance, LOSS of insurance is increasingly haunting families living with chronic illnesses.
"As the economic crisis worsens … the number of uninsured citizens will grow. In February 2009, more than eight percent of Americans were unemployed and 1.1 million of them will become uninsured with each one percent increase in unemployment.” Sen. Edward Kennedy (D-MA)
One thing for sure about trickle down theories, shi#t does trickle down on those that can least afford it.
Exhaust the ‘guide’ ideas for help. Gambling with your health by medication skipping, ignoring symptoms or such is not the wisest course.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Wednesday, March 25, 2009
"What's up with anal probing?"
For me, anal probing and alien abduction have always associated; however since the month of March is National Colorectal Cancer Awareness Month I will step forward - I was recently probed.
Not by aliens, I believe, but then again I slept through the whole experience so who knows.
Harassed for years at my annual physical to get a colonoscopy I had successfully dodged, delayed, and canceled all previous attempts.
Omens were not good as I followed my instructions and went looking for Fleet Phospho-Soda. Fleet had recalled the product, something about lawyers and renal failure.
Plan B was NuLytely, a gallon jug with powder in it and some flavor packets. You chug a glass wait a couple minutes and chug some more, brought back memories of old college drinking games.
Eventually after hours on the commode, I found myself debating the definition of a clear stool with the jug, not unlike Tom Hanks talking to his volleyball Wilson in “Cast Away”.
ANYTHING and EVERYTHING else was easy.
I weighed about 5 lbs less. Walking around with my extremely clean butt hanging out of the backless gown was somewhat exhilarating.
I remember chatting with the anesthesiologist and then I remember waking up. From the time I arrived to walking away was under 90 minutes and most of that was waiting and sleeping. My proctologist swore to me that I had a colonoscopy and everything was just fine.
Patti endured a colonoscopy a couple years earlier, a monumental caregiving challenge when non-ambulatory and both bowel and bladder incontinent due to Multiple Sclerosis. Without the assistance of her Mom and cousin (a former care facility worker) I cannot even imagine how her prep could have been possible or safe.
She too passed with flying colors.
Considering this all costs a couple thousand dollars and with 40%+ of Americans without medical insurance, this whole Colorectal Cancer campaign may be approaching a moot point with our failing US health care system.
Or worse:
“Thousands of veterans … may have been exposed to hepatitis and HIV because of contaminated equipment after getting colonoscopies …”
Possible contamination at VA facilities sparks call for inquiry
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Not by aliens, I believe, but then again I slept through the whole experience so who knows.
Harassed for years at my annual physical to get a colonoscopy I had successfully dodged, delayed, and canceled all previous attempts.
Omens were not good as I followed my instructions and went looking for Fleet Phospho-Soda. Fleet had recalled the product, something about lawyers and renal failure.
Plan B was NuLytely, a gallon jug with powder in it and some flavor packets. You chug a glass wait a couple minutes and chug some more, brought back memories of old college drinking games.
Eventually after hours on the commode, I found myself debating the definition of a clear stool with the jug, not unlike Tom Hanks talking to his volleyball Wilson in “Cast Away”.
ANYTHING and EVERYTHING else was easy.
I weighed about 5 lbs less. Walking around with my extremely clean butt hanging out of the backless gown was somewhat exhilarating.
I remember chatting with the anesthesiologist and then I remember waking up. From the time I arrived to walking away was under 90 minutes and most of that was waiting and sleeping. My proctologist swore to me that I had a colonoscopy and everything was just fine.
Patti endured a colonoscopy a couple years earlier, a monumental caregiving challenge when non-ambulatory and both bowel and bladder incontinent due to Multiple Sclerosis. Without the assistance of her Mom and cousin (a former care facility worker) I cannot even imagine how her prep could have been possible or safe.
She too passed with flying colors.
Considering this all costs a couple thousand dollars and with 40%+ of Americans without medical insurance, this whole Colorectal Cancer campaign may be approaching a moot point with our failing US health care system.
Or worse:
“Thousands of veterans … may have been exposed to hepatitis and HIV because of contaminated equipment after getting colonoscopies …”
Possible contamination at VA facilities sparks call for inquiry
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Sunday, March 22, 2009
Mentally Ill A Threat In Nursing Homes?
“Over the past several years, nursing homes have become dumping grounds for young and middle-age people with mental illness …”
MENTALLY ILL A THREAT IN NURSING HOMES
Now that was a helluva head line to read especially if you have a family member or friend living in a 24/7 care facility.
Reading on and learning that a woman with Multiple Sclerosis and dementia started a fire at a Connecticut nursing home killing 16 other residents was a vivid reminder of the day Patti while still at home with Multiple Sclerosis and the onset of her dementia like symptoms accidentally set our stove on fire.
A litany of tragic incidents in the AP story leaves you wondering about the Saturday morning fire that killed 4 developmentally disabled people at the New York State Office of Mental Retardation and Developmental Disabilities group home in Wells, NY.
The AP story offers several reasons from closing of mental institutions to the business of filling rooms at nursing homes.
I would propose two others. First aging home caregivers, a mentally disabled adult may have been a mentally disabled child. Parent caregivers may have died or can no longer care for them physically and/or economically. Second a failing health care system with far more have nots than haves.
Caring about people can never be about warehousing people whether they are frail and elderly or disabled and young.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
MENTALLY ILL A THREAT IN NURSING HOMES
Now that was a helluva head line to read especially if you have a family member or friend living in a 24/7 care facility.
Reading on and learning that a woman with Multiple Sclerosis and dementia started a fire at a Connecticut nursing home killing 16 other residents was a vivid reminder of the day Patti while still at home with Multiple Sclerosis and the onset of her dementia like symptoms accidentally set our stove on fire.
A litany of tragic incidents in the AP story leaves you wondering about the Saturday morning fire that killed 4 developmentally disabled people at the New York State Office of Mental Retardation and Developmental Disabilities group home in Wells, NY.
The AP story offers several reasons from closing of mental institutions to the business of filling rooms at nursing homes.
I would propose two others. First aging home caregivers, a mentally disabled adult may have been a mentally disabled child. Parent caregivers may have died or can no longer care for them physically and/or economically. Second a failing health care system with far more have nots than haves.
Caring about people can never be about warehousing people whether they are frail and elderly or disabled and young.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Wednesday, March 18, 2009
caregiving on the Conodoquinet
When it is sunny and 67°F (19°C) in mid-March you just have to make it an “outing” kind of day no matter what your care situation.
For us, not only an outing but an 'adventure', somewhere we had never been before. I am the first to say this is rarely a good idea when a wheelchair is involved, but I was in the mood to create accessible if need be.
Most eclectic place, old tree stumps and trunks are carved into tree art.
We found an abandoned Willow Mill Speedway, a racing track
for elves as best we could only guess. Whatever we did a couple laps for exercise with me pushing Patti then let Patti try a lap herself.
Even the maintenance buildings have been touched by the brush of a bemused painter.
Pavilions are accessible and the latest in wheelchair accessible picnic tables are available throughout the park.
Though just sitting and taking the time to loose your self in the sounds of a creek gurgling by is a gift money cannot buy.
Caregivingly Yours, Patrick Leer
For us, not only an outing but an 'adventure', somewhere we had never been before. I am the first to say this is rarely a good idea when a wheelchair is involved, but I was in the mood to create accessible if need be.
Discovering the 18 acres of Willow Creek Park tucked into a bend of the Conodoquinet Creek was like finding a hidden treasure.
Most eclectic place, old tree stumps and trunks are carved into tree art. Returning in Patti’s all terrain scooter this will be entirely accessible. Paths through the wet land sanctuary are paved environmentally friendly with wood chips. Patrick’s ‘rickshaw service’ navigated the terrain while giving Patti a reverse view from her wheelchair.
We found an abandoned Willow Mill Speedway, a racing track
for elves as best we could only guess. Whatever we did a couple laps for exercise with me pushing Patti then let Patti try a lap herself.Even the maintenance buildings have been touched by the brush of a bemused painter.
Pavilions are accessible and the latest in wheelchair accessible picnic tables are available throughout the park.Though just sitting and taking the time to loose your self in the sounds of a creek gurgling by is a gift money cannot buy. 
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
Tuesday, March 17, 2009
The Saint Patrick You Never Knew
“…The saints are for everyone—believer, unbeliever, Christian, non-Christian—it doesn't really matter. They are the people who say by their lives that human life is valuable—that my life is valuable—and that there is a reason for living. Without them, history would just be one horror after another."
“Some 1,500 years ago a teenage boy from what is now Great Britain was kidnapped and enslaved … . Not since Paris absconded with Helen of Troy has a kidnapping so changed the course of history.
And so it was that a young Briton named Patricius died an Irishman named Patrick. And neither Ireland nor Christianity was ever quite the same.”
From an interview with author Thomas Cahill in St. Anthony Messenger, “The Saint Patrick You Never Knew”.
- St. Patrick is the first male Christian since Jesus to praise women, speaking of women as individuals, lauding their strength and courage.
- St. Patrick is the first human being in the history of the world to speak out unequivocally against slavery.
- A better advocate than St. Patrick cannot be found for anyone disadvantaged, living on the fringes of society, or excluded—people that no one else wants anything to do with.
- A mystic who felt the presence of God in every turn of the road.
- It is Patrick's conversion of Ireland that makes possible the preservation of Western thought through the early Dark Ages by the Irish monasteries founded by Patrick's successors.
- The first to introduce Christianity outside Greco-Roman civilization.
- By converting the Irish to Christianity without making any attempt to romanize them as well, he founded a new kind of Church, one that was both Catholic and primitive. More joyful and celebratory (than its Roman predecessor) in the way it approaches the natural world. Not a theology of sin but of the goodness of creation.
When Irish eyes are smiling,
Sure, 'tis like the morn in Spring.
In the lilt of Irish laughter
You can hear the angels sing.
When Irish hearts are happy,
All the world seems bright and gay.
And when Irish eyes are smiling,
Sure, they steal your heart away.
(by Chauncey Olcott and George Graff, Jr.)
Beannachtaí Lá Fhéile Pádraig
(Blessings of St. Patrick’s Day!)
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Monday, March 16, 2009
care facility era: 5th anniversary
Sunday, was the beginning of Patti’s 5th year in an extended care facility.
An unremarkable, in fact, unnoticed benchmark for Patti, not so for me. Spent part of the day in my head beating myself up because Multiple Sclerosis progression had won. Even though I had juggled 14 years of home care for Patti and single parenting our daughter, the macho voice on my shoulder reminded me I had still lost.
Arriving to pick Patti up for an outing I jumped in helping the aides change Patti’s Depends and clothing with a stand-up lift. I was snapped out of my funk by the comradie, banter, and laughter between them all.
Knocking the macho voice off my shoulder, YES this was far better than 5 years ago in the twilight of homecare.
Providing the ol’ traditional basic needs of food/water, shelter, and clothing is not enough. Safety and healthcare ARE basic needs for someone living with Multiple Sclerosis.
In the twilight of homecare, Patti was falling multiple times a day and increasingly placing herself and others in at risk situations.
Patti can STILL develop other health issues and even more so because of an out of whack immune system from MS. Medical attention can be complicated by trying to juggle transportation and appointments around a home caregiver’s schedule.
Safety and healthcare have become NON-ISSUES in the care facility era, now at her need 24/7.
“Home” was my battle flag for homecare.
However, MS dementia like symptoms of cognitive progression plus total bowel and bladder incontinence changed the definition of home. When visiting meant possibly changing an adult diaper well you suddenly have no friends. Home became increasingly isolated.
It took awhile to get used to teamwork. However now, in the extended care facility era, three shifts a day of fresh, professional and kind people provide 24/7 attended care and companionship. Patti has never expressed a second thought. Additionally, Patti’s parents visit with her 3-4 afternoons a week. 4.5 evenings a week I pick her up for outings and/or dinners at home then tuck her into bed myself at her care facility.
Yes, as the macho voice on my shoulder reminds me, I still lost the home caregiving battle. However with the echoes of laughter from a Depend change in my head I know this is the better course for all of us.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
An unremarkable, in fact, unnoticed benchmark for Patti, not so for me. Spent part of the day in my head beating myself up because Multiple Sclerosis progression had won. Even though I had juggled 14 years of home care for Patti and single parenting our daughter, the macho voice on my shoulder reminded me I had still lost.
Arriving to pick Patti up for an outing I jumped in helping the aides change Patti’s Depends and clothing with a stand-up lift. I was snapped out of my funk by the comradie, banter, and laughter between them all.
Knocking the macho voice off my shoulder, YES this was far better than 5 years ago in the twilight of homecare.
Providing the ol’ traditional basic needs of food/water, shelter, and clothing is not enough. Safety and healthcare ARE basic needs for someone living with Multiple Sclerosis.
In the twilight of homecare, Patti was falling multiple times a day and increasingly placing herself and others in at risk situations.
Patti can STILL develop other health issues and even more so because of an out of whack immune system from MS. Medical attention can be complicated by trying to juggle transportation and appointments around a home caregiver’s schedule.
Safety and healthcare have become NON-ISSUES in the care facility era, now at her need 24/7.
“Home” was my battle flag for homecare.
However, MS dementia like symptoms of cognitive progression plus total bowel and bladder incontinence changed the definition of home. When visiting meant possibly changing an adult diaper well you suddenly have no friends. Home became increasingly isolated.
It took awhile to get used to teamwork. However now, in the extended care facility era, three shifts a day of fresh, professional and kind people provide 24/7 attended care and companionship. Patti has never expressed a second thought. Additionally, Patti’s parents visit with her 3-4 afternoons a week. 4.5 evenings a week I pick her up for outings and/or dinners at home then tuck her into bed myself at her care facility.
Yes, as the macho voice on my shoulder reminds me, I still lost the home caregiving battle. However with the echoes of laughter from a Depend change in my head I know this is the better course for all of us.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Sunday, March 15, 2009
accessible travel
"Accessible for one disabled person is not the same as accessible for another," Craig Grimes says.
Amen! Amen! Amen!
I can not even count how many times I have to “walk the ground” first before attempting to take Patti somewhere either in her wheelchair or scooter.
Hours of telephone conversations, if not even a pre-visit, have been necessary to determine exactly what is meant by an “accessible bathroom” in order to stay at a hotel.
The word “accessible” may as well be definition-less.
A shout out from Caregivingly Yours to Craig Grimes!
ONE MAN HELPS THE DISABLED SEE THE WORLD
Amen! Amen! Amen!
I can not even count how many times I have to “walk the ground” first before attempting to take Patti somewhere either in her wheelchair or scooter.
Hours of telephone conversations, if not even a pre-visit, have been necessary to determine exactly what is meant by an “accessible bathroom” in order to stay at a hotel.
The word “accessible” may as well be definition-less.
A shout out from Caregivingly Yours to Craig Grimes!
ONE MAN HELPS THE DISABLED SEE THE WORLD Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
musings: Patrick Ponders ...
Tuesday, March 10, 2009
MS Awareness: a fairy tale of two people
Let's face it, Multiple Sclerosis and fairytale are not often found in the same sentence. Welcome to Jennifer and Dan Digman for sharing their most unigue story and even more unigue perspective on living with MS.
"Movie writers would never dream up a fairytale of two people with
multiple sclerosis falling in love and living happily ever after. But Jennifer and Dan have been living this truest of love stories as a married couple since 2005.
Combined, Dan and Jennifer have taken on this chronic illness for more than 20 years. Jennifer was diagnosed in 1997; Dan was diagnosed two years later. She has secondary-progressive MS, while his is relapsing-remitting."
Dan and Jennifer Digmann
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
"Movie writers would never dream up a fairytale of two people with
multiple sclerosis falling in love and living happily ever after. But Jennifer and Dan have been living this truest of love stories as a married couple since 2005.Combined, Dan and Jennifer have taken on this chronic illness for more than 20 years. Jennifer was diagnosed in 1997; Dan was diagnosed two years later. She has secondary-progressive MS, while his is relapsing-remitting."
Dan and Jennifer Digmann
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Sunday, March 08, 2009
MS Awarness: right to die, right to live
Debbie Purdy, diagnosed with Multiple Sclerosis in 1995 has watched her life progressively impaired from jungle trekker and parachutist to non-ambulatory and dependent. She's stirred up a legal and media storm in the UK trying to protect her husband from prosecution to help her to travel to Dignitas, a Swiss assisted suicide clinic.
In the US, Dr. Jack Kevorkian assisted in the choices of over a hundred people to die. Multiple Sclerosis and Lou Gehrig's disease (ALS) were the most common diagnoses.
One of those with MS wrote that he feared living in "one of those rat-infested nursing homes to be warehoused by `Nurse Ratched,'", others worried over the toll of years of long term care on their loved ones, others feared struggling alone.
I can understand people fearing that if they become disabled with Multiple Sclerosis they'll have no choice in how they live.
Our culture and media is obsessed with able bodied mythology. Even MS specific publications and pharmaceutical marketing slant toward MS-lite, leaving MS-max in a shadowy unknown.
In our story, yes Patti’s life has dramatically changed. She did not know that Multiple Sclerosis would by her mid 40’s mean that each day she would be dependent on others to get out of bed, to get dressed, to cut up her food and help feed her. Non-ambulatory, every bladder and bowel movement would be in her pants and necessitate others to clean and change her. Visual and cognitive impairment would block her into a world within a world.
Yet for Patti to survive every such day and want to get up and face another takes heroic courage and a will to live that few of us may have.
We all from individuals, to families, to societies need to focus more on caring with dignity.
MS or not, we are ALL going to one day know or love someone who can no longer take care of themselves, even ourselves.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
In the US, Dr. Jack Kevorkian assisted in the choices of over a hundred people to die. Multiple Sclerosis and Lou Gehrig's disease (ALS) were the most common diagnoses.
One of those with MS wrote that he feared living in "one of those rat-infested nursing homes to be warehoused by `Nurse Ratched,'", others worried over the toll of years of long term care on their loved ones, others feared struggling alone.
I can understand people fearing that if they become disabled with Multiple Sclerosis they'll have no choice in how they live.
Our culture and media is obsessed with able bodied mythology. Even MS specific publications and pharmaceutical marketing slant toward MS-lite, leaving MS-max in a shadowy unknown.
In our story, yes Patti’s life has dramatically changed. She did not know that Multiple Sclerosis would by her mid 40’s mean that each day she would be dependent on others to get out of bed, to get dressed, to cut up her food and help feed her. Non-ambulatory, every bladder and bowel movement would be in her pants and necessitate others to clean and change her. Visual and cognitive impairment would block her into a world within a world.
Yet for Patti to survive every such day and want to get up and face another takes heroic courage and a will to live that few of us may have.
We all from individuals, to families, to societies need to focus more on caring with dignity.
MS or not, we are ALL going to one day know or love someone who can no longer take care of themselves, even ourselves.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Thursday, March 05, 2009
MS Awareness "put it out there"
“forgive me for not capitalizing as i have ms and limited use of my left arm.
i wanted to thank you very much for "putting it out there."
How do people with Multiple Sclerosis share in this 21st Century?
In our story, Patti cannot journal herself because of MS visual and cognitive impairment, lack of use of her left arm, and unpredictable control of her right.
Do MS stories make some Dickensonian passage from MS past, MS present, and MS yet to come?
Yes, no, and maybe. Multiple Sclerosis symptoms and progression tend to be unique as well as are the support and resources available to each person.
More progressive MS and advanced MS symptoms unquestionably require more effort to communicate. Yet, sharing YOUR story may help another to discover that they are not alone. Otherwise cyberspace, by default, becomes a phantom’s mask revealing only part of the face of MS.
“not only am i living with ms but my husband also has the disease. … (your website) helped me look at this disease from both perspectives.”
I am always humbled by the reach of Caregivingly Yours. From my original entry: “Why share? … most people will have to walk this path eventually. Why buy some book, feel free to peek in. … This new world of journals or blogs or whatever seems worth a try.” “Caregivingly Yours” April 27, 2004
Journals/blogs read in reverse chronological order and eventually demand necessitated a website. If someone had just found our story, it was challenging to ‘cut to the chase’ through years of entries. A website gives you and the reader more control, of course it costs you money whereas journaling is free.
Network Solutions® offers a reasonable priced do it yourself web site package including domain name and web site building tool “for dummies”.
If considering sharing I recommend trying a journal/blog first simply because it is a free way to test the waters of cyberspace. Google’s Blogger I have found easy to work with.
Most important of all, just say it. Just “put it out there”.
Discovering you are not alone is a beacon anytime, any where.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Sunday, March 01, 2009
MS Awareness - Visual Impairment
Friday afternoon at Patti’s care facility …
Patti: “Patrick, is that you?”
Standing less than six feet from Patti I flashed on memories of when we first dated over 25 years ago before Multiple Sclerosis.
Patti would remove her glasses and squint her way around. I used to joke that she reminded me of Mr. Magoo. “Magoo” became an affectionate nickname.
“Hey! Magoo.” I answered.
Her smile beamed in on ‘the shape’ that now days her “legally blind” vision masks in the blur of MS visual impairment.
While the above is how MS visual impairment impacts one family, OUR family, check out this link from the UK Multiple Sclerosis Society for the nuts and bolts of:
Visual Impairment in MS
Speaking of vision, this able-vision caregiver and snow lover had to blink twice this morning to make sure I was not dreaming. Two inches of winter beauty dressed the day.
Patti: “Patrick, is that you?”
Standing less than six feet from Patti I flashed on memories of when we first dated over 25 years ago before Multiple Sclerosis.
Patti would remove her glasses and squint her way around. I used to joke that she reminded me of Mr. Magoo. “Magoo” became an affectionate nickname.
“Hey! Magoo.” I answered.
Her smile beamed in on ‘the shape’ that now days her “legally blind” vision masks in the blur of MS visual impairment.
While the above is how MS visual impairment impacts one family, OUR family, check out this link from the UK Multiple Sclerosis Society for the nuts and bolts of:
Visual Impairment in MS
Speaking of vision, this able-vision caregiver and snow lover had to blink twice this morning to make sure I was not dreaming. Two inches of winter beauty dressed the day.
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 ...
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