disability 'dashboard' gauges Multiple Sclerosis

Take a glance below at the image of Patti’s Multiple Sclerosis dashboard disability gauges.

EDSS gauge reflects Kurtzke Expanded Disability Status Scale (EDSS) a method to quantifying disability in Multiple Sclerosis from 0 = normal neurological exam though 10 = death due to MS.


ADL gauge refers to the Modified Barthel Scale to measure performance in basic Activities of Daily Living (ADL) from 100 = independent through 0 = totally dependent on others.


Running on empty might be a fair observation, though it would be both correct and incorrect.


Why should the victories and experiences of those who have progressed beyond independence fade into shadows or become invisible?


Too many stories of people with MS fade away or disappear as MS progression takes away the ability to tell their own story.


Stories do not end with independence they evolve as here in Caregivingly Yours, the caregiver blogs linked on this page and more out in the blogosphere. Those who care … caregiver, carer, spouse caregiver, family caregiver, well spouse, family, friends, aides or whatever become part of their story.


Pictured below are the exact same MS dashboard disability gauges just from a different view.

Behind this picture was support and care. It took multiple aides plus a lift at Patti’s care facility to get Patti up, transferred, washed, and dressed. I transported her in our wheelchair accessible van, assisted her with eating, and pushed her through the streets to the captured moment in time. In spite of heat, humidity, and dependency Patti supplied the intangible … her spirit.

While Multiple Sclerosis steals the body and mind, piece by piece, from the person diagnosed with MS it also steals THEM from YOU. Everyone changes.

Does everyone evolve? Isn’t that answer really up to you?

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

health info-mation

Something like 61% of Americans go online to seek health-related information.

When “our story” of living with Multiple Sclerosis as a family first met the Internet in the early 90’s it was on an AST computer with 4 RAM, using Dos commands to open programs (even Windows). With a dial up connection, I first discovered ‘others’ on the Prodigy network's Multiple Sclerosis bulletin boards.

Today it is a different world.

Top 20 Health Websites 8/5/2009 eBizMBA

Feel like a kid in a candy shop? Try to ask yourself …

How is the information reviewed?

“Mavens” and “experts” abound; but to paraphrase Glinda, “Are you a good maven or a bad maven?”

Who pays for the Web site?

"This is great news for marketers …They have another way into the office." 3 Out of 4 U.S. Nurses Recommend Health Websites to Patients

“Visitors to the HealthCentral websites were more likely to request prescription drugs from their physicians than were visitors to competing sites …” Medical Marketing & Media

Or, what the hell, just start one yourself …
(read out loud using your best Billy Mays' voice) “grab your very own super-profitable "Health Biz in a Box" right away! … Ordinarily $1,497.00, but yours for just $47 if you order now or within the next 5 days!!”

Remember … Let’s be careful out there!

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

spouse caregiver / IMHO

Being a spouse caregiver is rarely a stand alone role. Though crucial it may not even be foremost of your family responsibilities. In our story, every morning redefined the dilemma of caregiving vs parenting; Patti progressively declined while our daughter simultaneously grew up.

Spouse caregiver is never an exemption from the lives of others, whether parent, sibling, grandparent, aunt, uncle, or friend.

Even the label ‘spouse’ caregiver confounds. Why is caring any more about gender and marital status than it is about race or creed? If “blood is thicker than water”, then wouldn’t that make spouse caregiver ‘the weakest link’?

Seemingly infinite variables of those in need and those who give care fragment us into an abstract to those looking in. Finding a composite of a ‘spouse caregiver’ would be like the man below seeing a 'face' in the painting.

Perhaps intuitively, who knows? We caregivers somehow convert that abstract canvas into a collage of life.

In our story, I simply made it up as I went along. It has been a 19 year see-saw ride. Patti’s Multiple Sclerosis progression brought increasing dependence while raising our daughter as basically a single parent from 18 months to adult was about teaching independence.

We had to raise a daughter not only in a family living with a parent's progressive MS but also to live in the able bodied world. We carved out time to experience things WITH Mom and also carved out time to experience more able bodied adventures WITHOUT Mom.

One such able bodied tradition through the years has been hiking in Shenandoah National Park. I consider myself blessed that our now 21 yr old would still put up with Dad, and his antics, on a nostalgic respite overnighter in the mountains.

http://www.youtube.com/watch?v=vI3kHXYF838

So what is this entry actually about? Or am I simply rambling? IMHO (in my humble opinion) “spouse” caregiver may be best explained by the Danish philosopher Søren Kierkegaard, “Once you label me you negate me.”

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

a Swank Diet and Casino Therapy

Why do North America and Western Europe have considerably higher rates of MS than the rest of the world? Why is MS, 8 times more prevalent for inland populations than those living along the coast of Norway?

60 years ago, Dr. Roy Swank, University of Oregon Medical School, decided to study the relationship between diet and MS.

Swank’s study spanned 35 years and tracked over 150 MS patients; half following his Swank diet and the other half a standard western diet, high in saturated fat, dairy products and meats.

SWANK DIET

Swank Diet participants had 80% reduction of MS exacerbations during the first 3 years; only 5 % of these patients suffered any deterioration after 35 years.

We never ‘got’ the easy to follow aspect of the diet. Between juggling spouse caregiver, raising our daughter, homemaking, and working … meal planning and preparation became expendable. Nor could “Meals on Wheels” and/or home health aides be expected to comply. Most importantly, Patti had STRONG feelings about what she ‘likes’ and does ‘not like’ to eat, delivery is only a phone call away.

Reading the recent issue of NMSS Momentum magazine, The skinny on the Swank MS Diet, reminded me of the debate over diet and MS.

While studies are studies, sometimes you just stumble onto solutions. Tonight we discovered Casino Therapy.

We found ol’ fashioned, one-armed bandit, slot machines at Hollywood Casino. Parking Patti in her wheelchair on the side of an end machine, I was able to prompt Patti to alternate stretching her left and right arm out pulling the slot machine arm for over an hour (minus cigarette breaks).

For whatever reason, Patti rarely uses her left arm, and exercise in general is tough in a wheelchair. Tonight’s workout must be a record and even cheaper than physical therapy since we started with $1 and left with $1.

We wrapped it up with snacks track side at the adjoining race track enjoying the summer night.

Cigarettes, soda, and cookies are NO Swank Diet but then again Casino Therapy has got to count for something. No teaspoon of cod liver oil could equal as many smiles or as much laughter.

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

Dear Special Olympics Family ...

"... It is with a heavy heart that I write to let you know that my mother, Eunice Kennedy Shriver, passed away early this morning. …"

Portrait of Eunice Kennedy Shriver by David Lenz
National Portrait Gallery, Smithsonian Institution

" ... My family and I would be proud and honored if you would take some time to learn more about her life, share your own remembrances about her, and read the remembrances of others at a website that was recently established to honor her legacy, www.EuniceKennedyShriver.org.
In the spirit of her hope that everyone would share in the power of Special Olympics, I hope you’ll not only read and contribute to the site, but share it with friends."

With great appreciation,
Timothy P. Shriver

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

accessible fruit: donut peaches

Accessible fruit! Who would have thought?

With Patti’s Multiple Sclerosis progression holding and eating some of her favorite foods has become too challenging. As her spouse caregiver, I am always on the look out for solutions and options that can enable her.

Stopping at a road side fruit stand I discovered Donut Peaches (aka Saturn Peaches, aka Angel Peaches, aka Chinese Pan Tao Peaches).

Patti loves peaches. However MS progression was making holding and eating a peach next to impossible. That is until we tried “accessible” donut peaches! They were a hit, easy to hold and easy to eat!

Don’t just take our word for it. Mother Earth News offers the top reasons to eat a Donut Peach:

1. They taste better than other peaches. They're sweeter, with almond overtones.


2. They are lower in acid than other peaches.


3. The pit doesn't cling to the flesh, so it's easy to pop out with your thumb.


4. The fruit's thin, red skin has little or no fuzz.


5. Their small size lends itself to being eaten out of hand.
   

You just have to like a snack high in Vitamins A and C and only 37 calories per peach.


Thank God when nature lends you a hand.


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

monster truck wheelchair shopping cart

Pushing a 'monster truck' wheelchair shopping cart through Walmart is what you make of it.

Flare ups of Patti’s Multiple Sclerosis and/or summer weather can take the usual enthusiasm out of driving electric carts for her. As a spouse caregiver, trying to maneuver those electric beasts from the side or rear is definitely NOT fun, so we opted to try their ADCO "Rover" (combo wheel chair and shopping cart).

Kind of cool the way it works, opening and closing like a shell. It’s pictured in front of vehicle tires for perspective. Pushing around this ‘big dawg’ felt like pushing around an adult Tonka Toy.

Finished with our toiletry shopping we decided to take a nostalgic roll through the toy department, pushing “try me” buttons. Well, until Patti decided to respond to Elmo’s invitation to sing a long with “Who the hell cares you weird little thing!” We both dissolved into laughter and to giggles from kids and parental stares we escaped to an older toy aisle.

An aisle dominated by Barbie and Shrek figures only made the laughter worse as somehow the conversation shifted to whether Barbie and Shrek ever “did it”. This image alone may keep me from sleeping for a week. Anyway time to roll out before we were thrown out for having too much fun.

Successfully transferring Patti back to her own wheelchair at the entrance/exit to Walmart, I was accosted by the cart herder with “Dude! You are one strong dude!”

At my age, ANYTIME a youngen calls me dude not once but twice this is the start of a good conversation. He explained he pumps iron and was most impressed with the way I transferred Patti using only neck, shoulder, and arm muscles. “You do everything wrong but it works, awesome!”

I am trying to remember the last time we had so much fun, laughed so hard, complimented, and spent so little money. Hey! It’s Walmart admission is free.


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

on death, dying, underwear, and socks

Happy 40th anniversary to “ON DEATH AND DYING” by Elisabeth Kübler-Ross, and her five stages of grief: denial, anger, bargaining, depression, and acceptance.

In this Internet age with cyberspace immortality, I am beginning to wonder about ‘acceptance’.

Deaths send the media scrambling to Facebook and MySpace to browse for sensational tidbits from the deceased and ‘friends’. Your words, rants, and pictures are forever.

How do families even access journals or social networks if they do not know the passwords? How do they note that someone is dead!

What is with posting comments on dead people’s pages?

Why do ‘friends’ still invite the dead to join Mafia Wars?

What is proper etiquette? Tweet, email, or post an entry to notify friends of a death.

Ahhh! The problems of cyber-immortality.

Of course, we caregivers have to assume 'real' immortality or at least the methuselah gene, too much depends on us waking each moring. We've been in denial too long to ever evolve.

How many accounts from banking, to credit cards, to bills will require someone to know your passwords to access those accounts? … and oh yes, they may read all your old email.

Somewhere I remember an admonition from my Mom about always wearing clean underwear and matching socks because you never know when you are going to die.

Amazing how that seems to make more sense each day.

Is this the future, keyboards instead of ouija boards?

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

respite care: teen autism & special needs

Recently a father emailed me about day care for a teenage son diagnosed with autism. I wish I had a better answer to give than only suggest a method to search for local resources.


Opening our Sunday paper, I was surprised to find this front page story:

PARENTS PRAISE RESPITE CARE

“Finding a sitter for a special needs individual, child or adult, is often impossible,”

In the news story, a parent whose son is diagnosed with autism and mental retardation touches a poignant and pragmatic aspect of special needs respite, helping to prepare transition.

Finding genuine respite may be like finding the Holy Grail for families living with special needs.

From my view, most available activities and programs seem to require a parent in attendance from accompanying a Pennsylvania Department of Mental Retardation aide to Easter Seals social activities such as bowling, swimming, and cooking.

Whether technically respite or not, certainly there is camaraderie to such activities and parent to parent contact, support, and information exchange are invaluable.

Inquiring minds might notice that United Cerebral Palsy hosts the respite center and Easter Seals sponsors the social activities. Googling “teen autism” locally may not even find these resources easily.

Summertime amplifies need because special education takes a vacation.

Summertime traditions may as well be a parallel universe. These are teens and young adults that cannot be dropped off at a pool or amusement park. Camps for special needs are far and few and expensive.

It takes somehow finding the time in a day with no time to mine for gold through the fragments of local information available.

More media attention on caring resources is a special need we all share.
Patrick Leer

Health Activist:

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

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