timeline of health care law changes

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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.

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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.
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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