Wednesday, January 21, 2009

Inauguration, MS, and caregiving, Oh My!

Raising a child while living with Multiple Sclerosis, you always kind of wonder even worry about what affect it all may have on their future.

While the world watched Barack Obama become the 44th President of the United States. Two of us watched and felt the weight of anxiety lift for there at the center of the world stage stood Michelle (Robinson) Obama, raised by a parent with Multiple Sclerosis.

ONLY a caregiving family would even have noticed much less discussed how former Vice President Dick Cheney and family dealt with what appeared to be your everyday workhorse Everest Jennings Folding Wheelchair with surprising skill.

In this politically diverse household with two Democrats, one Republican, and one Independent it is interesting that only the Republican and Independent voted FOR Obama for President.

“… why a man whose father less than sixty years ago might not have been served at a local restaurant can now stand before you to take a most sacred oath.”

Raised in neighboring Maryland, I believe it was more like 45 years ago when de jure segregation ceased to be. Had President Obama been born in either Maryland or Virginia his parents could have been imprisoned for up to 10 years under miscegenation laws not repealed until 1967.

“… with remembrance, of who we are and how far we have traveled”

From a wheelchair Patti has witnessed two Clinton, two Bush, and today’s Obama inaugural.

"...we did not turn back nor did we falter; and with eyes fixed on the horizon and God's grace upon us, we carried forth …”

Picking her up to view the Inauguration I had to bait the hook with lunch and a trip to Walmart. “Walmart! I like that part, they have good shit!”

Certainly not the kind of ad Walmart could use, but you get Patti’s drift. In our universe we move forward by pushing.

Caregivingly Yours, Patrick Leer
web site:
musings: Patrick Ponders ...

Friday, January 16, 2009

profiles in ability: "Christina's World"

Artist Andrew Wyeth died today at age 91.

Christina Olson died at age 74 in 1968.

“Christina’s World” will live forever allowing all to touch the soul of those who face the poignant and heroic line between disability and ability.

“Christina”, Christina Olson was a real person. Born in 1893 she was challenged with an unknown progressing muscular deterioration from childhood. By age twenty-six, she could walk no more than three steps without grabbing an object, her hands were weakening, and she was experiencing exhaustion after ordinary tasks. Doctors were not able to diagnose her condition.

In 1948, Andrew Wyeth sketched Christina as she crawled down the hill to visit her parent's graves. Adding his talent as an artist and his wife Betsy as the model he painted “Christina’s World”.

To say the end result is riveting is understatement.

The thing is “Christina’s World” in one form or another is REAL for so many.

I am reminded of the first time our neighbor across the street stopped me to share that Patti had been pulling herself up our hill on our picket fence and crawling across the side yard to get into our home.

We lived in a Federalist Farm Home located on the high point of our property. You parked by the carriage house and walked up the hill to the house. Patti in the earliest years of Multiple Sclerosis fought, clawed, and crawled if necessary for the fight for independence.

Seeing the painting in the news so much today how can I not be reminded of the courage of so many Christina’s.

Caregivingly Yours, Patrick Leer
web site:
musings: Patrick Ponders ...

Thursday, January 15, 2009

Pennsylvania Farm Show 2009

If you were to ask Patti her favorite part of the Pennsylvania Farm Show, she would tell you “the Food Court”!!!

(though with MS related dysphagia, caregiver assistance is mandatory to prevent choking)

"The FOOD COURT" is where Pennsylvania’s farms meet the consumer in the most overwhelming, fresh, and affordable menu you will ever find … deep-fried breaded mushrooms, mushroom soup, grilled portabellas, mushroom salad, vegetable soup, batter-dipped vegetables, blooming onions, strawberry slush drink, broccoli-cauliflower salad, chicken corn soup, dill pickles, carrots and celery, broccoli soup, berry pie, pumpkin pie, bean salad, chicken breast sandwiches, turkey barbecue, wings, bucket of chicken, chicken cheese steak, chicken soup, deviled eggs, red beat and mustard eggs, chicken parmesan sandwich, turkey meatball sandwich, chicken chili, trout chowder, tortilla crusted tilapia, cinnamon sticky bun, shoofly pie by the slice, whoopie pies with white or peanut butter icing, fresh apples, apple dumplings with ice cream, apple cider, cider floats, caramel apples on a stick, dried apple snacks, apple or peach sundaes, rib eye steak sandwiches, philly cheese steak sandwiches, beef BBQ sandwiches, beef sticks, peach tea, honey dumplings with ice cream, orchard freeze slushy honey ice cream, honey waffles, maple sundaes, maple yogurt, maple cotton candy, baked potatoes, fresh cut French fries, potato donuts, potatoes and baked sweet potatoes, milkshakes, milk/chocolate milk, ice cream sundaes, deep fried mozzarella cubes with marinara sauce, pork barbeque sandwiches, roast beef sandwiches, lamb stew, ham and cheese sandwiches, beef meatball sandwiches, beef sausage, beef/pork hot dogs, steak salad, ham salad, and pink lemonade.

The flaw to the PA Farm Show Complex is that everyone and everything on wheels or unable to use an escalator needs to converge on too few elevators. Wheelchairs, scooters, strollers, assisted walkers, even catering carts create an epic logjam which can easily consume an hour or more of your visit.

We have learned to take outside all-terrain routes between the 11 buildings housing 24 acres under roof; however this solution takes some extra Patrick pushing and pulling power to successfully maneuver.

Patti ends her Farm Show visits with a nice long afternoon nap to counteract MS fatigue while I abuse Ibuprofren and coat my lower back with Mineral Ice.

Caregivingly Yours, Patrick Leer

Saturday, January 10, 2009

living with MS / a grant of freedom

THANK YOU National Multiple Sclerosis Society Central Pennsylvania Chapter!

Through their financial assistance program we have been fortunate to receive a 2009 grant that helps pay 15% of our yearly payments on our wheelchair accessible van!

A special shout out to Carla Hecker, Information Resource Center Specialist with National Multiple Sclerosis Society, Denver, CO who ‘was there’ over the holidays to answer questions and get the paperwork started.

And, of course, thanks to the NMSS Central Pennsylvania Chapter President, Margie Adelmann and Director of Programs & Services, Robin Unangst for wrapping it all up and signing the check.

If you ever wonder what Multiple Sclerosis fundraising such as MS Walk is all about … Patti’s freedom is a good example!

Wheelchair confined and unable to transfer Patti’s life would be dramatically different without our van. For whatever reason accessible vehicles are priced comparable to luxury vehicles, living with progressive MS for over two decades does not really leave you economically in the luxury car class.

Between a discounted vehicle loan rate brokered by Pennsylvania Assistive Technology Foundation (PATF) and these grants from NMSS it helps to make freedom a bit more affordable.

Caregivingly Yours, Patrick Leer

web site:
musings: Patrick Ponders ...

Monday, January 05, 2009

Multiple Sclerosis & family: wheelchair rollin' 2008

As a caregiver I have never found myself even trying to make a list of New Year’s resolutions. While you certainly must prepare and can ‘try’ to anticipate, the disease progression of the person you care for drives the agenda.

2009 finds me beginning my 19th year as a spouse caregiver, and Patti her 24th year since diagnosed with Multiple Sclerosis.

Captured below in 1 minute and 36 seconds is a look back at 2008 accompanied by "Old Man River".

Multiple Sclerosis & family: wheelchair rollin' 2008

Uploading this I was humbled to discover that Caregivingly Yours videos have been watched nearly 60,000 times since October 2006 when the original Multiple Sclerosis & family: wheelchair rollin’ debuted.

You Tube “insight” feature informs me that our original rollin’ video while most popular in the US, China ranks second, with Sweden and Germany tied for third in views.

Thank you ALL for caring! We will do our best to keep our story of living with Multiple Sclerosis and family, rollin’ on for 2009!

Caregivingly Yours, Patrick Leer
web site:
Patrick Ponders ...

Sunday, January 04, 2009

caregiving: MS incontinence prophylaxis with Macrobid

Antibiotics, I noticed, are grabbing headlines to open 2009.

Preventive Use of Antibiotics Cuts ICU Deaths

Conventional medical wisdom and antibiotics seems to fluctuate.

Over a decade ago when incontinence first became a part of living with Multiple Sclerosis, it was too often accompanied by Urinary Tract Infections (UTI).

Patti’s MS related physical challenges and wheelchair complicated her ability to deal with her own medical care.

Being a ‘guy’ and her spouse caregiver I found myself in a crash course on female anatomy. Yes, we all have a casual knowledge of each other, but woefully inadequate to be engaged in discussions with OB/GYN’s.

The more I learned the more I discovered it was more than dangerous. It was time to make some noise as her caregiver!

Anyway long story short working along with an OB/GYN who was able to see the more hollistic view of living with MS and caregiving we all decided to try an experiment, prophylaxis with Macrobid® (Nitrofurantoin).

In our story, Patti has NEVER had another UTI since prophylaxis with Macrobid®. It has been almost a decade and yes her doctors periodically like her to ‘take a break’ for a period of time before resuming. Whatever, it works!

When wearing your medical advocate hat, I believe you have to act to protect the patient NOW from the most AT RISK threat. Long term effects certainly must be weighed however first you have to get TO the future.

Caregivingly Yours, Patrick Leer
web site:
musings: Patrick Ponders ...

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