Friday, February 27, 2009

EVERY DAY is MS Awareness Month / Week

EVERY DAY is MS Awareness Month and/or Week around here. Recently, March has become associated with public awareness of Multiple Sclerosis.

“MS: Now You See It, Now You Don’t,”
MS Education & Awareness Month sponsored by Multiple Sclerosis Foundation (MSF). Raise awareness with family, friends, and community by highlighting the unpredictable and often invisible nature of multiple sclerosis. To order MS Awareness kits contact MSF at (800) 225-6495 or

“Move It!”
MS Awareness Week sponsored by National Multiple Sclerosis Society (NMSS). Click blue link to find your local chapter for their specific daily events for the week. Patti’s favorite kind of MS Awareness “hospitality and snacks” are featured at our local chapter’s open house.

“This March, Be Visible – Because MS Symptoms Often Aren’t.”
Humbled by emails I have received following my article in MSFocus Winter 2009, “A Caregiver’s Perspecitive: MS and Cognition”, I believe sharing a few excerpts will help understand the role of “be visible”.

“I read your article … and I know that even though I live with the MS horror-show, I still have something to say to others. You did something that I was told years ago: "Just say it."”

“I was happily surprised to see your article … every day is a NEW adventure.... (my husband) has lost some cognitive function as well as other things but I always think IT CAN BE WORSE...we manage but thank you for your words......very comforting. A fellow caregiver”

“Your article made me stop and it took my breath away. … I was fine and going about my life … worked for 20 years … had a perfect work record. All of a sudden, I was getting fired. I couldn't remember things anymore, multi-task or answer phones w/o forgetting.”

“I have read some of what you have lived with in the past years. I can relate. … I am the only caregiver of my husband. … (Our families) do not understand why he acts the way he does.”

“My wife, living with MS for 36 years, now has severe cognitive problems. … It has been an awful struggle for both of us. After reading your article I felt I’m not alone. I identified with everything you wrote …”

Caregivingly Yours, Patrick Leer
web site:
musings: Patrick Ponders ...
answer key to MS Awareness a crossword puzzle

Wednesday, February 18, 2009

MS Walk 2009: I PUSH because ...

Help OUR team in the fight against MS!

We've formed a team for walk MS because ... How many people go to bed expecting to awake to a different life in the morning?

Thanksgiving morning 1989, Multiple Sclerosis transformed our family including myself, our then 18 month old daughter, and, most of all, my wife Patti who awoke unable to walk, see, and barely able to talk.

Join our team on Sunday, April 19th as a walker or a volunteer! Make a donation online! Send in a check! There are so many ways to make a difference in the fight against MS, and it all begins right here.
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. MS fundraising enables financial assistance grants from NMSS Central Pennsylvania Chapter for families living with Multiple Sclerosis. It helps make freedom a bit more affordable.

NMSS Central Pennsylvania Chapter web links VeriSign secured, powered by Convio.

Caregivingly Yours, Patrick Leer

caregiving: American Recovery and Reivestment Act

Interestingly 17% of the $787 billion American Recovery and Reinvestment Act (H.R. 1) is targeted for health care spending.

In 2008, the United States spent 17% or $3.4 trillion of its gross domestic product (GDP) on health care. Elsewhere, health care spending accounted for 11% of the GDP in Switzerland and Germany, 10% in Canada and France. Are we almost twice as healthy?

President Obama’s health care reform derailed by lackadaisical leadership choices remains without a captain. Now it seems we are patching up a runaway train for expedience’s sake.

“… ideals still light the world, and we will not give them up for expedience's sake. … “ President Obama. ... Oh how those inaugural speeches can come back to bite you in the butt.

Don’t get me wrong, real people need real help NOW. The American Recovery and Reinvestment Act will temporarily help those who need it the most:

$87 billion to prevent State cuts to Medicaid

$25 billion to help workers who lose their jobs maintain employer-provided health insurance by providing a 65 percent subsidy for up to nine months.

$13 billion to help disadvantaged students and $12.2 billion for the education of disabled children.

Another $30 billion in related spending for increased research and health information technology may have less tangible help, but certainly will benefit jobs in those sectors.

Yes, NEED dictated the American Recovery and Reinvestment Act and it will temporarily help millions. However it is NOT going to help millions more at risk or ruined by the runaway train of US healthcare spending:

47 million Americans have NO medical insurance.

Even if insured is it fool’s gold?
* Since 1999, employment-based health insurance premiums have increased 120 percent, compared to cumulative inflation of 44 percent and cumulative wage growth of 29 percent during the same period.

If the mortgage meltdown is considered a culprit in our current mess, then consider this:
About 1.5 million families lose their homes to foreclosure every year due to unaffordable medical costs.

Health care spending is not an incurable disease, but it is killing our economy. My diagnosis is “cupiditas” or good old fashioned greed.

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

Saturday, February 14, 2009

Valentine's Day - Fleeting Fluff

"But I'm the one who deserves the diamond journey pendant necklace and the roses, not the women with healthy husbands!" I have shoted this more than once at my TV as Valentine's Day nears and we are deluged with the ads of the jewelry, flowers, romantic overnight Valentine's packages at hotels, etc.

For many well spouses, Valentine's Day can be anything from horribly sad to downright annoying and aggravating, since we won't be getting gifts from our spouses who are too ill or disabled to recognize Valentine's Day. The Valentine's celebrations by the general public can leave the well spouse feeling dejected, bitter, and cast to the sidelines of life - feelings that we can experience on any day but that are perhaps magnified as we watch all the healthy, happy, functioning couples celebrating their love with special gifts.

But let's look at the February 14 hullabaloo more realistically. . . Read more...

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

Monday, February 09, 2009

caregiving: teeth brushing smiles

Laughter is good medicine, yes, but if you are the entertainer sometimes you must be prepared.

I try to involve Patti in the only activity of daily living she can really still do reasonably by herself, brush her teeth.

Yes I position her wheelchair in front of her sink, fill her rinse cup, put toothpaste on her tooth brush and hand it to her but too often brain lock or something another would leave it right there.

Ever the showman, I take on a silly accent or song to provide verbal cues.

Sunday night I rolled out some vaudeville while leaning into the sink and singing a modified version of "Heigh Ho!", “We brush, brush … in our mouth the whole day through” .

Whether annoying or entertaining, this produced not only a big smile but more importantly brushing!

Next handing Patti her rinse cup, I leaned in and boomed out in a operatic voice, “We rinse, rinse …”.

Patti exploded in laughter spitting toothpaste and rinse water all over me.

This in turn triggered absolute hysterical laughter!

I believe I have never seen anyone have more fun brushing their teeth (and bringing out the hook on my performance :) ).

Later she was still laughing. It was like transferring a bowl of jello into bed.

In the care facility era, you have to "create" the laughter wherever and whenever. Come to think of it that is true in any era of care.

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

Friday, February 06, 2009

MS and Cognition: a caregiver's perspective

Thank You, to the Multiple Sclerosis Foundation for including “our story” in their Winter 2009 issue of MSFocus Magazine. View “A Caregiver’s Perspective: MS and Cognition” in MSFocus on line, pages 36 and 37.

Or view the article below:

Our then elementary-school-age daughter discovered the first clue: Her mom laughed hysterically at the word “brick.” Then came the day I opened our monthly credit card bill to find $2,000 in charges from a home shopping network.

Homecare agencies cancelled our aides due to incidents involving my wife, Patti’s, verbal and physical outbursts. Finally, I returned home one afternoon to discover our stove top on fire while Patti sat unconcerned or unaware at the kitchen table.

Looking back, were there earlier clues that my wife’s MS symptoms might not stop with the physical? Yes, but who knew to look? We were still reeling from the physical symptoms of Patti’s diagnosis and trying to learn to live with MS as a family. In a few short years, my wife had become wheelchair-bound. We were swamped in physical adaptations, and in the early and mid-1990s, cognitive problems associated with MS were simply not mentioned very often.

Now researchers tell us that MS can, in some cases, cause permanent cognitive problems. In Patti’s case, those problems are profound. (click to continue …)

Caregivingly Yours, Patrick Leer

Wednesday, February 04, 2009

Care Plan Reviews

Tuesday was Patti’s quarterly Care Plan Review or in ‘federal speak’:

Code of Federal Regulations, Title 42 PUBLIC HEALTH, Chapter IV, Part 483 – Requirements for States and Long Term Care Facilities, Sec. 483.20 - RESIDENT ASSESSMENT:

(c) Quarterly review assessment. A facility must assess a resident using the quarterly review instrument specified by the State and approved by CMS not less frequently than once every 3 months.
I will admit in the beginning of the care facility era I was flustered by sitting down with people representing departments such as nutrition, activities, therapy, nursing, administration, etc. After all I had done this all by myself for a decade and a half of homecare.

With time I have learned the advantages to team work and the challenges of communications in any care facility. There are not only departments representing the skills of care but three shifts of people needed to staff 24/7 care.

Yes, sometimes a review may be much about nothing. Yet other times they have been most productive and insightful for all.

Too few families either cannot or do not involve themselves in the care facility era making these quarterly reviews more important for patients and families than any compliance with law.

Cognitive impairment can prevent many patients from directing their own care. The law can make facilities sit down and talk but it cannot make caregivers and families attend.

Come to think of it, how many homecare situations really take time to “review” and “plan”? Speaking for myself I was too busy juggling parenting, homemaking, working, and scrambling to keep up with progressing Multiple Sclerosis.

From Patti’s perspective Care Plan Reviews are always positive because they mean an earlier and longer outing, since they are scheduled in early afternoon.

On a gorgeous February afternoon there is nothing quite like enjoying a smoke with a duck.

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

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