fondue with Uhthoff's Phenomenon / Multiple Sclerosis

“April is the cruelest month.”  A week of freakishly warm temperatures, 90°F (32.2°C), has turned Spring helter skelter. 

Pollen drifting like desert sand may be hyperbole, but mowing my lawn twice before April 6^th is not! Even our cat stuck her tongue out at me! 

Now let us add Multiple Sclerosis to a Spring afternoon in our backyard … 

Chilled fruit fondue is a light, fun, and easy to eat meal for Patti. Bite size pieces of fresh cantaloupe, honeydew, and watermelon can be pre-set with toothpicks for dipping into peach yogurt (her favorite).  

Patti can ‘feed herself’ and I have found this dysphagia friendly in that for whatever reason the combination of fruit plus yogurt tends to encourage Patti to chew and taste her food before swallowing. Any meal with less prompting is a good meal. 

Add some cheese and crackers and you feel downright special. 

Enjoying being on our back patio doing our best impression of trendy I noticed Patti starting to slow and become disoriented, fruit was suddenly missing both the yogurt dip and her mouth. 

As I expressed concern, Patti growled back “I’m all f#cked up!” 

Uhthoff's phenomenon is in the house! A pseudoexacerbation associated with heat and Multiple Sclerosis, Patti’s eloquent, succinct description is right on the mark. 

For inquiring minds that need more detail - from MS Society of Canada:

Managing MS Symptoms: Uhthoff's Phenomena (Heat Intolerance) 

“Demyelinated fibers in the central nervous system can be very sensitive to even small elevations of core body temperature …Because these symptoms disappear with rest and cooling, they can be confusing … Heat induced weakness presents safety concerns for people with MS … they may find themselves too weak to extricate themselves …” 

Fortunately moving both Patti and our meal inside and cranking up the central air conditioning Patti rapidly stabilized as room temps dropped and we returned to enjoying dinner.

Multiple Sclerosis never misses a chance to pounce. 

Though long ago I never advanced beyond my Wolf Badge in Cub Scouts I have learned that when it comes to caregiving, (Winter, Spring, Summer, or Fall) “be prepared” is always good advice. 

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 
videos: http://www.youtube.com/daddyleer

Interview with the Caregiver, part 2

CY: You have been a caregiver for 20 years, is that normal?

Patrick: “How long will this take?” That inner child sitting in the back seat endlessly asking “are we there yet” never grows up. Inquiring minds do want to know.

Statistically the average time spent caregiving is 5 years. Yet statistics fail to capture the extraordinary range of caregiving situations. End of life care for a terminal illness is obviously shorter than care for a chronic disease or disability.

For what it’s worth only 15% of caregivers have been involved for 10 years, so at 20 years I guess you could say I’m “abnormal”.

CY: Have there been different stages or levels of caregiving over the years?

Patrick: Somewhere I wish there was written in stone “The X Stages of Caregiving”. Unfortunately, uniqueness makes this square peg round hole territory.

Caregiving ‘evolves’ of that there is no doubt. Obviously disease progression drives the pace. Caregiver metamorphosis defines the pace.

At genesis you are about SUPPORT. You basically help out.

With progression PERSONAL CARE becomes part of the equation, ‘hands on’ assistance with activities of daily living, dressing, feeding, personal hygiene, and toileting.

When personal and medical decisions can no longer be competently self-directed you enter ADVOCACY, almost becoming ‘one’ person.

CY: What do you mean by caregiver metamorphosis?

Your self identity transforms. In the beginning you identify yourself as “my wife has …”, or “my child has …” That is also how you see your role.

Later you begin to identify your self as a caregiver. You are not the person you were before just ‘adding on’ support for another to ‘your’ life. You accept your transformed self-identity.

As caregiving evolves fundamental changes occur in both of you.

CY: Ever consider walking away?

Patrick: Yes, the voices in my head argue about this all the time. Caregiving is a CHOICE; the person you are caring for has NO choice to be ill or disabled. You will always be both separated and joined by that reality.

to be continued …

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

Interview with the Caregiver, part 1

CY: In the mother of all interviews, Anne Rice’s vampire, Louis, remarks “I saw my last sunrise. I remember it completely … I watched its whole magnificence for the last time as if it were the first. And then I said farewell to sun light, and set out to become what I became.”

Do you remember the moment you ‘became’ a caregiver?

Patrick: Whoa! I did not see that segue coming.

Yet interestingly I do remember vividly the hours before ‘becoming’. That evening before bed was everything we wanted and dreamed. Playing with our healthy happy child, in 'our house', two jobs, two cars, “two cats in the yard, life used to be so hard.”

From the moment Patti awoke in the morning unable to walk and barely able to see or talk hours of chaos unfolded. If I became a caregiver it was only because I was the only was left standing and holding our 18 month daughter in my arms as Patti was hospitalized with her first MS exacerbation.

CY: Do you think becoming is like that for other caregivers?

Patrick: There is no cookie cutter caregiver. Some are adults suddenly caring for their parents, others are parents learning they will be caring for a special needs child for the rest of their lives, and others like us are one moment partners and the next moment one dependent on the other.

Age, abilities, education, resources, and more make it impossible to predict a reaction.

Fate has dealt your loved one the cruelest hand, and you are thrust into a life that will never be the same.

CY: Did anyone help guide you?

Patrick: No, in 1989 there were no brochures sitting on counters about caregiving at any medical office or MS organization.

Even if there were I am not sure it would have been helpful, differences often exceed similarities.

You react intuitively. There is simply too much too quick to absorb and accept. Don’t obsess over getting it right or wrong.

Focus on being there, and 'I care'. A simple hug may be the best possible first step.

to be continued …

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

timeline of health care law changes

Pro or Con what has always been needed was an easy to read view of health care law timeline and changes ...

Infographic by HealthInsuranceProviders.com: Compare health insurance options from many different providers!

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

I discovered the Internet and Multiple Sclerosis

I discovered the Internet and Multiple Sclerosis spouse caregiving in the early 1990’s on an AST desktop computer with two RAM and a dial up connection.

Even on prehistoric technology I was in awe of what seemed information magic. Our only other options were brochures from the neurologist or sitting in our local library reading through the New England Journal of Medicine.

Time was increasingly shrinking juggling spouse caregiving and basically single parenting. Nothing except the Internet was ‘open’ after I got Patti and our daughter to bed and finished homemaking chores.

While neurologists focus on Multiple Sclerosis as a medical condition, we were learning that MS is life changing.

Then suddenly on a screen were the stories of people like us, living with Multiple Sclerosis as a family.

Today a Google search of Multiple Sclerosis yields over 9 million results; I cannot help but wonder if overload doesn’t swamp those already reeling from being newly diagnosed.

The Savvy Web User

Using the Web as a source of health information is not without its hazards; incorrect or misleading information, bad links, stale news, fraud, and even hoaxes all exist on the Web, so findings must be viewed with a critical eye. When you come across a Web site that looks promising, ask these questions about the site and the information it presents to determine its trustworthiness.

* Are authors and original source material cited?
* Is the author credible by virtue of listed education or experience?
* Is the information up to date and unbiased?
* Are links to other medical sources present and working?
* Is the site easy to navigate, clear, and useful for all types of people?

Be sure to share search findings—especially those related to medical treatments—with a doctor or other healthcare professional that can help you determine the legitimacy of the source. …

Click Understanding the Internet: MS and the Web to open the full article by Melissa Carter-Ozhan, Editorial Supervisor, BioScience Communications.

Hope burns like a wildfire across the Internet as well it should. Navigate wisely.

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

one-person transfer technique, the hug

Out and about living with Multiple Sclerosis transferring to and from a wheelchair basically comes down to the assistance of one person and the epitome of caring, the hug.

Technically correct or not, this is how we have successfully and safely executed the one-person transfer hug for almost 15 years.

PREPARE

Remove potential transfer obstacles such as wheelchair leg and foot rests.

Optimum positioning is theoretical; we deal in ‘best of possible’. Position chair remembering this is a “pivot’ transfer, at most you will be moving only one foot.

Engage wheelchair brakes and double check.

COMMUNICATE

Talk through your transfer plan including both your role and person in wheelchair’s role. Avoid directional words such as right and left, remember you are facing each other this gets confusing. Pantomime is not only effective but often humorous and a little laughter goes a long way to reduce transfer tension.

POSTIONING

Toe-to-toe knee-to-knee I lean down toward Patti. She hooks her arms around the back of my neck. I put my hands around her lower back.

I use a three count countdown to transfer. On ‘one’ and ‘two’ I rock Patti forward giving her a sense of the momentum and dynamics then release her back to an upright seated position. Additionally this gives MY back and knees two quick stretches before transfer.

On ‘three’ I squat, pull Patti forward toward me, and I begin to stand up to a hug, encouraging her to extend her legs to ‘touch the floor’.

Important: Never hesitate to abort transfer if either you or the person you are transferring is experiencing pain. Simply release them back into wheel chair and seek assistance.

PIVOT

IF Patti has extended her legs then I simply pivot ‘us’ at target and lower her by squatting down and releasing hug. We might even be confused for dancers.

Now if Patti ‘has not’ extended her legs … well then it resembles whatever it takes to end safely.

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

Neither life nor life’s challenges come with a how to manual. People sharing their experiences can often be the best of possible windows.

related ‘caregivingly yours’ video
wheelchair transferring Multiple Sclerosis caregiver 

by Patrick Leer

BLOGS:

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

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

knee contractures Multiple Sclerosis

A sing-a-long of “Dem Bones” may have held the clue all along to the recent mystery of intermittent pain in Patti’s thigh and hip.

“The leg bone connected to the knee bone,
The knee bone connected to the thigh bone,”

The suspected culprit is “lack of use” of Patti’s SoftPro Static Gel Knee Orthosis for treatment of Multiple Sclerosis knee contractures. The recent change in Patti’s room resulted in changes in staff that interact with her daily. Patti gladly said “no” when asked and knee orthosis use faded away.

Restoring a daily routine of wearing the knee othosis for two hours has reduced to nearly eliminated complaints of pain in thighs and hips. More extraordinary to me is how effectively Patti is again extending her legs when transferring.

Treatment for Multiple Sclerosis knee contractures takes time, effort, and commitment. MS Society UK explains it all far better than I and specific to Multiple Sclerosis in this video “to guide physiotherapists in treating those with MS with joint contractures and improve disability and pain.” Symptom Relief - Relieving tight painful joints 

It gets all the more complicated when cognitive impairment and memory loss are part of the symptoms.

Exercise and/or treatment are never easy and will always be difficult … yet also ‘connected’ just like dem bones to every other aspect of living with Multiple Sclerosis.

On the topic of exercise:
Pushing Patti 3.5 miles is NOT an everyday occurrence. Training for the annual MS Walk has become a rite of passage for us from Winter to Spring.

The terrain and exhibits of the Army Heritage Trail is a favorite training camp. Capturing Redoubt #10 is an accessible version of Rocky’s steps at the Philadelphia Museum of Arts. On the balls of my feet I muscle Patti's wheelchair up the hill, then overpower gravity and momentum on the way down. Resting at the top after half a dozen successful captures and over the screams of my leg muscles I hear Patti remark “this looks familiar”. :)


Related entries:
May 2009 knee contractures Multiple Sclerosis
Oct 2008 Multiple Sclerosis knee contractures
Aug 2008 memory loss and knee contractures

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

beware psychiatrists bearing laxatives

Why is it usually 13 when we form things here in the US? Back in 1844 at a Philadelphia get together, 13 organizers formed the Association of Medical Superintendents of American Institutions for the Insane. Today we know then as the American Psychiatric Association.

More importantly they have been busy revising and preparing their fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-5) scheduled for publication in May 2013.

Ever throw a rock in a pond? Ripples happen.

Health care should evolve with knowledge and changing populations. It is the ripples that leave me crossing my fingers. Medical coding, billing, insurance, prescriptions, services, and more will be affected by the changes.

As any caregiver knows, it is the keyboard strokes and mouse clicks of myriad hourly employees along the way that affect outcome as much if not more than diagnosis.

As best I can make heads or tails of proposed changes Major or Minor Neurocognitive Disorder would house what is now labeled “cognitive impairment”, "memory loss" and/or “dementia-like symptoms” associated with Multiple Sclerosis.

Major Neurocognitive Disorder 

Minor Neurocognitive Disorder 

Clicking the links above will take you to the DSM-5 website. It is best to check it out from your own perspective.

Caregiving demands you keep an eye on “Revisions Я Us” especially when cognitive deficits interfere with functional independence of the person you care for.

Neither can you let it consume you. Finding a moment to smile, well that’s just healthy.

Researching this entry, I stumbled over a smile. Benjamin Rush, the "Father of American Psychiatry" featured on the logo of the American Psychiatric Association, also holds one of the quirkiest footnotes in US history. It seems Dr. Rush concocted and supplied the Lewis and Clark Expedition with fifty dozen laxative pills. With over 50% mercury content, the corps called them “thunderclappers”. Archeologists on the other hand have been grateful for the mercury content in tracing the Expedition’s actual route. … Wilderness use was ‘revised’ 150 years later to “leave no trace BEHIND”. :)

Beware psychiatrists bearing laxatives!

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

MS Walk: why we PUSH, ROLL and even WALK

We are not fundraising gurus, just one family living with Multiple Sclerosis for a little over 20 years.

MS Walk or Walk MS, has become the flagship event both for fundraising and Multiple Sclerosis awareness in most communities.

On a best of possible MS Walk days we find ourselves enjoying several hours among others like us and unlike us, such is Multiple Sclerosis.

In the early years, hope burned like a wildfire consuming everything. Fighting MS was all that mattered.

As the years rolled by, that fire of hope continues to burn just more focused. “Living with MS” and quality of life now dominate.

Likewise “why fundraising” shifts with each person living with MS. For many it is about research for a cure. For many it is about help with getting through the day.

There are both reasons to help and excuses in the best of times and the worst of times. While there are valid questions about charitable fundraising, in general, waterboarding munchkin sized peddlers of Girl Scout cookies is hardly necessary. … and yes there a many causes competing for help.

What I do know is that for a few hours on one day a year we can participate in something where ‘living with Multiple Sclerosis’ is not the exception. Plus Patti’s freedom of mobility, our wheelchair accessible van, has benefited from MS fundraising.

We invite you to join us on April 18th at Hershey, PA. Clicking the link below opens “Patti’s Pride” team page, where you can visit her team, join and/or donate.

http://main.nationalmssociety.org/goto/pattileer 

If not here, you can still form or join a team, be an individual walker, find someone to sponsor, or simply volunteer to help with a Walk in your own community.

In USA locate a chapter 
In Canada please consult Division home pages
                SVP voir les pages web des Divisions 

MS Walk: why we PUSH, ROLL and even WALK (30 sec)



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

wheelchair accessible trails / Wildwood Park

My caregiver antenna usually twitches when it comes to “wheelchair accessible” labels. Yet Sunday was a beautiful sunny late Winter afternoon and off we headed to boldly explore the wheelchair accessible ‘Boardwalk’ nature trails of Wildwood Park on the Northern most fringes of Harrisburg, PA.

Applause, applause! The two wheelchair accessible trails are everything and more they are promoted to be including proximity with wet woodlands and marsh.

To find wheelchair accessible permanently-mounted binoculars along the ‘boardwalks’ was mind boggling.

If you build it, will they come? … Well, if tracks in the snow tell a story, then apparently Patti was the ONLY wheelchair to use the ‘North Boardwalk’ trail on Sunday.

Boardwalks were 90% clear and dry with only some patchy snow on stretches through deepest woodland.

Accessible parking (4 spaces) is available in the Olewine Nature Center lot. Then there is about a 100 yds of blacktop and gravel mix surface to the Delta Boardwalk and about another 100 yards North across Paxton Creek to the North Boardwalk.

North Boardwalk features bird blinds that jut out into the wetlands, and yes there are wheelchair eye level viewing portals.

The Boardwalks are indeed wooden boardwalks, level and easy for rolling or pushing. However the connecting paths between boardwalks and parking lot are not level. Whether those distances are easy is relative to abilities. Some may find them ‘not easy’, but I doubt anyone would consider them difficult. Electric scooters or power chairs should have no problems maneuvering from parking lot to boardwalks.

Boardwalks are listed as a half mile each, one way. So basically we enjoyed wheelchair accessible wandering through two miles of wetlands and marsh. Access to the wild is such a treat. Multiple Sclerosis may try to deny, but with a little help we can do much.

Thank you … Dauphin County Parks and Recreation, Friends of Wildwood, Benjamin Olewine and Audubon Pennsylvania.
---------------
UPDATED 3/09: Special thanks to ALL the volunteers who work to keep the trails open and inviting year 'round. ... a special 'shout out' to the 14 yr old volunteer who spent his Sunday morning shoveling snow off the Delta Boardwalk.

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

Multiple Sclerosis Center of Excellence

Our story is honored to be of help to those who deserve our gratitude.

From Multiple Sclerosis Center of Excellence United States Department of Veterans Affairs:

“Understanding the Internet: MS and the Web / Web Sites for Caregivers
… There are websites that are devoted to caregiving issues. Some of these include Caregiver.com, Family Caregiver Alliance, and National Family Caregiver Association. There are a few Blogs that also address this population and they are Caregivingly Yours and MS Caregivers.”

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

pulling your hair out and smiling at the same time

Recently Patti was observed by staff intermittently cursing over pain in her right hip and thigh during assisted dressing and Depend changing.

In the care facility era, pain intermittent or otherwise is approached differently than in homecare or self-care. Multiple staff over multiple shifts equals numerous eyes to not only document but set in motion addressing the problem. This is especially beneficial when Multiple Sclerosis memory loss and cognitive impairment clouds a patient’s ability to self direct.

Care in a care facility is governed by a protocol, more importantly a protocol that is not subject to the timetables of the real world.

Technology comes to you. X-ray ruled out a fracture. Ultrasonic testing ruled out a blood clot. Often ruling out problems is actually working forward.

A “house call” is the norm in the care facility era. Unfortunately Patti’s MS prevents her from sharing much credible information or history, if any, to help her physician during room visits.

I prepared and left a “precise and concise” one page note for Patti’s physician on Patti’s family and physical activity history and my own observations on the different lifts in use since recent room change. Could the change in slings be affecting Patti’s hip and thigh?

As I have said before, as an advocate you must do more than monitor a ‘whatdunit’. You must inject yourself IN the mystery.

Many problems yield a diagnosis only after treatment begins, sometimes the response to therapy leads to the diagnosis.

Currently physical therapy (just down the hall) is treating Patti with ultrasound massage, analgesics are used for complaints of acute pain, and staff is working on the challenges of varying lifts.

OK, so people and machines are working around the clock. So what does Patti have to say about all this? Patti’s Mom asked her that question when visiting the other day. … Patti’s response: “What pain?”

Welcome to pulling your hair out and smiling at the same time?

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

no diagnosis on the dance floor

A teenager rolls across the dance floor. Red/orange neon lighting glowing from under her ‘pimped-out’ electric wheelchair, rapping along with the music:

“I'm so 3008
You so 2000 and late
I got that boom, boom, boom”

Her smile transcends the disco lighting and bass beat thumping. Her laugh illuminates the seen and unseen.

Somewhere in its origin this particular special needs Valentine’s lunch and dance party was about providing an option for students unlikely to be involved in traditional dances at high schools. Now with attendance grown to 600, this ‘Valentine’s Day’ lunch party is NO alternative. This is the real deal!

No painting exists without the strokes it took to create it. It takes an unwavering commitment of one Elks Lodge to annually host this lunch party including growing needs for space, preparing lunch and supplying refreshments. It takes the school system which finds a way to keep the transportation support in the budget. It takes a single grocery store manager who in turn twists arms to supply donations of ‘all beef’ hot dogs. It takes the support of the county Special Olympics. It takes the special education staff to accompany and assist many of the students. It takes a snack food vendor who donates bags of chips. It takes a ‘designer’ ice cream sales rep who donates individual serving size containers. It takes a private high school that buses over able-bodied volunteers to serve the food, clean up, and assist.

The DJ and dancers are one collective body now. Cue … play ... bodies move, arms wave … voices shout in celebration …

“Easy come, easy go, now we on top
(Top top top top top)
Feel the shot, body rock, rock it, don't stop"

One Elks Lodge has been doing this in one incarnation or another since 1963, long before anything was politically correct.

There’s no 'diagnosis' on the dance floor ... just the smiles of young people having fun.

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

Adverse Information on Health Care Practitioners

On March 1st, the National Practitioner Data Bank for Adverse Information on Physicians and Other Health Care Practitioners becomes available to hospitals and other eligible ‘queries’.

Originally created 22 years ago by Congress, it was intended as a one stop clearinghouse to check for disciplinary actions taken anywhere in the country against health care professionals.

This expanded version includes not only doctors and dentists but all licensed health care workers such as pharmacists, technicians, nurses, and aides.

ProPublica and the Los Angeles Times offer an investigation into problems with failed oversight, missing data and flaws in reporting and compiling of data by both Federal and State governments. Dangerous Caregivers Missing From Federal Database 

Unquestionably there are pluses and minuses whenever government collects and compiles data no matter how well intended. A month ago in ooops! Government looses hard drive I shared my own experience.

What hits me right up side the head about this data bank is who is authorized to query.

What about ‘we the people’? Are we not the ultimate employers of health care?

What is this … government knows best … hospital knows best … lawyers know best … BUNK! Who is more affected by ‘adverse information on physicians and other health care practitioners’ than the people receiving care?

On the White House web site you can read “My Administration is committed to creating an unprecedented level of openness in Government … Transparency promotes accountability and provides information for citizens …” I guess you can find graffiti anywhere.

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

WE laugh in the NOW. I remember for us both.

Pondering the dichotomy of change and caregiving over morning coffee a robin alighted on the snow outside my window. Omens are too weird over the first cup of coffee. I left Stardust to monitor nature’s contradictions while I took my head for a walk.

A month ago I shared in an entry, Whac-a-problem, about a change in Patti’s room assignment at her care facility.

While the change was a week of angst for me, Patti on the other hand summed up the transition, “What room?”

Why does it rub me wrong when a friend shares how much insight they have gained into cognitive decline of a 50 something woman from a fictional novel? Is fiction more ‘understandable’ than real life? Maybe it is.

We have been living a battle with cognitive decline, memory loss, and dementia-like symptoms of Multiple Sclerosis for almost 10 years. Real life is not only exhausting but long, slow and filled with wildcards. It is not as easy to gleam information from.

I think when she cannot. This role I do not enjoy. You pressure yourself so much more when required to think for another.

As a caregiver I replace and keep replacing that which is lost. Is it sad if Patti cannot remember some outing or activity shortly after it happened? I cannot answer for her. I simply conjure up another ‘now’.

‘We’ laugh in the NOW. I remember for us ‘both’.

Tell me grasshopper which is more important, the life we live or the life we remember? 

 Caregiver's Perspective: Multiple Sclerosis and Cognition 

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

Miss Pickle to marry Mr. Pickle

Some days you just have to smile!

Back on New Year’s Eve, Patti and I enjoyed a fun and totally accessible evening in Dillsburg, PA. Pickle drop at Ireland’s midnight in Pennsylvania 

How could I not smile out loud as I read this morning’s email:

Long-Awaited Wedding Date Chosen!

Dillsburg Area Business Association is pleased to announce the nuptials of “Mr. Pickle” to “Miss Pickle” will be held during PICKLEFEST on Saturday, May 8th, 2010.

The Public Ceremony begins at 11:00 AM. Guests may register at 10:00 AM for $2, at NYCHAPS’ Maple Shade Barn on the corner of Greenbrier Street and Harrisburg Pike. Proceeds benefit the Northern York County Historic & Preservation Society.

Wear official wedding colors, green and purple, or create pickle-themed attire to be considered for selections of Maid-of-Honor and Best Man. All registrants take part in the ceremony and will appear in the Wedding Album.

Dillsburg Mayor Henry “Hank” Snyder will officiate the service. The bride’s gown was lovingly donated by Dillsburg’s “Bon-Ton” Thrift Shop.

You can bet this is marked on our calendar!

"You know you're in love when you can't fall asleep because reality is finally better than your dreams." -Dr. Seuss

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

Snow Removal for People with Disabilities

Curb cuts are inadvertent victims of street plowing. Accessible parking spaces do seem to be too frequently used for snow piles. Ramps and inclines can get treacherous.

New Jersey pioneered a “Snow Removal Law” in 1999 to enforce removal of “snow, ice, or other obstacles from accessible parking spaces, curb cuts, and other improvements designed to promote accessibility”.

As a 20 year veteran of Multiple Sclerosis caregiving and wheelchair pushing, I do not believe plow operators, businesses, and homeowners are really criminal minds. I find most people simply overwhelmed by snow storms in general and unaware, bordering on oblivious, of the ripples that deny access to others.

As much as anyone I was thrilled to see snow plows keeping our neighborhood streets open. However where are they going to put it? Here Pennsylvania “may inconvenience the property owner by plowing snow onto the sidewalk rather than allowing snow accumulation to become a hazard on the highway.”

Inconvenience? It was difficult to tell if I was shoveling plowed snow off my sidewalk or spelunking.

While the pictures below may appear to signal my success restoring our sidewalk’s access for Patti, there is also a curb cut still buried under the snow to Patti’s left.

But that is a project for tomorrow. Today was Valentine’s Day, Patti seemed impressed visiting our snow canyon before we headed off to some fun and dinner at Hollywood Casino at Penn National Race Course.

We spent a couple hours enjoying penny slot machine physical therapy with Patti alternating her left and right arms as she pulled the slot machine lever, with of course breaks for cigarette smoking therapy for eye hand coordination. Started with $10 and cashed out with $11.01!

Laughter and good times are accessible. Too often their greatest obstacle is time and effort.

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

get your caring mojo going

Once upon a time, by one magical ‘dawn's early light’ …

‘we the people’ were blessed with snow from ‘sea to shinning sea’.

49 states dusted with snow; Hawaii's the holdout 

Get your caring mojo going! Living with a disability is living on the edge whether independent or assisted. There is no extra time in a day.

Embrace winter! Enjoy snow! Look around and CARE. Helpful services such as ‘Meals on Wheels’ are often suspended. Would you like to go without a meal for a day? Wondering why your neighbor’s driveway is not shoveled? Stop wondering – shovel it.

As the inches pile up, so do your chances to care.

Here is an excellent example from the Nation's Capitol:
Schools Ask Community To Help Shovel Out

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

'Friends' torture, kill disabled woman

No horror writer could even write much less imagine the following:

A mentally disabled woman was fed vegetable oil, spices, detergent, urine and medications, then forced to write a suicide note, stabbed to death, wrapped in plastic, put in a garbage can and dumped in a school parking lot …

Her head had been shaved, and she had been bound with Christmas decorations and clothing; she also was hit with a towel rack, vacuum cleaner hose and a crutch

Sadly this is not fiction. Five adults and one youth are all charged with criminal homicide and kidnapping, and being held without bond in the Westmoreland County, PA prison.

Jennifer Daugherty had become involved in a community center in Greensburg, PA where she met several people whose names she had mentioned to her family as ‘friends’ - including several whose first names share those of some of the suspects.

Jennifer Daugherty rest in peace.

Pa. family: 'Friends' torture, kill disabled woman

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

activities of daily living / child of the north wind

While a snow storm may temporarily inconvenience “the things we normally do in daily living” imagine your personal activities of daily living (ADL) slipping out of your control permanently.

Multiple Sclerosis is a relentless and random thief of one’s abilities to perform ADLs. There is no thawing change in seasons.

Maybe it is because winter and snow have always been energy sources for both Patti and I that the unfairness of MS seems more outrageous.

Patti was an avid skier and with her long term memory more vivid these days than her short term memory well snow storms trigger recollections of slopes of powder. All the more I wanted to rail at the heavens when I went to pick her up for our pre-blizzard outing and watched her needing the assistance of three aides plus a Hoyer lift and sling to get out of bed, changed, and dressed.

Instead I found strength from her good spirit and laughter through it all. No lift tickets these days but instead a wheel chair accessible smoking lounge on wheels.

Heading back home it was time for me to take on Winter. Since Punxsutawney Phil saw his shadow on Groundhog's Day, 40” (1.02 m) of snow has fallen on our little piece of the Earth.

Piles of shoveled snow plus drifts are getting rather epic. Media talking heads claim we have more snow than the Vancouver Winter Olympics.

Conditions were so bad on Wednesday birds took shelter in our lilac bush shielded from blizzard winds.

While I battled to keep the driveway clear, township snow plows arrived as the storm was kissing us good bye. Trying to maintain our tradition of picking Patti up for a post storm outing I was foiled as Pennsylvania closed three major Interstates, which in turn transformed secondary roads into parking lots.

Alas! At least as a fellow child of the north wind, Patti knows that sometimes the mountain wins.

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

shoveling snow for a cat

22 inches (56cm) of snow can affect life, yet cats help us all keep it in perspective. Our cat, “Stardust” could not push open the flap on her cat window this morning. It was time for yours truly to get busy, and supervised.

Before I could start on our vehicles and driveway, additionally a cat trail was necessary in the back yard.

Back in December a 22 inch (56cm) snowfall left me stranded for two nights. This time it was on my home court, bring on the rematch!

Unquestionably heavy snow falls also affect both visiting and/or outings with Patti. There is some intangible balance between safe travel conditions and keeping Patti part of life outside her care facility walls.

"Neither snow, nor rain … stays these courageous couriers …” Yes, the Greek historian, Herodotus was referring to Persian mounted couriers, 2500 years ago, but it equally applies to caregiver mentality.

So we bookended the snow storm with outings. Lunch and errands as the first snow flakes fell, Friday afternoon. Then after spending today shoveling, I managed to navigate our wheel chair van for a Saturday evening outing.

Interestingly I found Patti already in bed when I arrived to pick her up. She told me she was not feeling well and had been throwing up all day. Not that I do not believe her but I know that Multiple Sclerosis related memory loss and mental confusion sometimes gets the better of her. Checking with nursing staff and aides they were not aware of any vomiting, nor had Patti complained of not feeling well. Whatever! The offer of an outing and a ‘smoke’ instantly cured the patient and she was ready to roll.

While we managed to be out and about, few others could say the same. “Pennsylvania Gov. Ed Rendell declared a statewide disaster emergency … National Guard forces were deployed to help state police” Unfortunately, not much was open, even McDonald’s was closed!

Yet one wheelchair van rolled through the streets with two occupants having a grand old time enjoying the snow.


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