Caregivingly Yours, MS Caregiver

Ouch! Degenerative Bone Disease and Multiple Sclerosis

2012-01-29T17:23:00.000-05:00

Ouch moments intermittently dominated this past week. While Patti cannever actually tell me where or what hurts, I observed each ouch always somehowinvolved the use of her left arm either removing her coat or transferring herfrom wheelchair to bed. I say intermittent because out of 8 coat removals only3 were ouch moments while two out of four transfers to bed involved an ouch. Lookingfor common denominators, each transfer ouch was preceded by a coat removal ouch,yet each coat removal ouch was not followed by a transfer ouch.

Ouch by deduction might even frustrate Sherlock Holmes. No it’snever “quite elementary” when asking Patti is unfortunately confounded by herMultiple Sclerosis symptoms of short term memory loss and cognitive impairment.

With anywhere between half to two-thirds of those diagnosed with MSreporting pain as a symptom it would be easy to assume this is about MS. Exceptthat Patti has never in 25 years reported pain associated with MS.

In this situation the care facility era is a godsend. While Pattifell off to sleep I stopped to discuss my observations with the nursing staff.They ordered an x-ray of her left shoulder for the next day. X-ray machinescome to you in the care facility era easier than delivery pizza in the homecare era. The next afternoon I was looking at the radiologist’s report as Istopped by to pick Patti up for an outing.

On the good side the x-ray found no fracture or break, on thenegative it did reveal 'mild degenerative bone disease'.

Degenerative bone disease is commonly known as degenerative osteoarthritis. Allegedly this affects more than 20 million Americans. It’sabout the breakdown and loss of the cartilage of the joints which when workingproperly acts like a shock absorber helping the bones glide over one another. Whenbones begin to rub each other – ‘ouch’ may be an understatement.

Tylenol for pain and application/massage of a bengay type ointmentwill be the immediate treatment. Outings and such need not be compromised just adjustedto ouchless by minimizing left shoulder rotation.

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

exercise, fitness, caregiving for Multiple Sclerosis

2012-01-24T12:09:00.000-05:00

Across the years of caregiving, I’d guestimate I’vepushed Patti’s wheelchairs at least 5,000 miles (8,000 kilometers).

Multiple Sclerosis caregiving is physicalcaregiving. Sure the pushing might sound dramatic but the heavy lifting isincalculable beginning with the first time I helped Patti off the floor after afall to the non-ambulatory stage and one person unassisted transfers.

Not only have I had hernia surgery but achesand pains so common I joked that Bengay was eau de cologne forcaregivers. A ‘back brace support weightlifting belt’ and/or large pain relieving patches were too often simply part ofgetting dressed.

That is until a year and a half ago when I firstdiscovered Planet Fitness, “Caregivingly Yours: are you fit to care / exercise”

“Exercise recommendations for someone caring for a loved one are no different than for anyone else. 30 to 40 minutes ofmoderately intense exercise three or more times a week.”

“Caregivers responsible for lifting loved one’sin and out of bed or chairs require a strong core.”

Hey! 90% of the time I’ve been a caregiver Iviewed exercise as some hobby for the spandex clad bourgeoisie - some of usjust learn slower.

Using the Planet Fitness 30 Minute circuitworkout (a series of stations with lever-and-pulley machines for each majormuscle group) I’ve not only been able to strengthen the specific muscles usedto transfer and lift Patti but build better muscle harmony and no longer need the ointments and braces.

To train the ‘pushing engine’ it takes aerobic/cardioexercise and their variety of choices and bells and whistles is most appealing.When the same thing gets boring, I lose interest. These days I start with onemile on a treadmill with maximum incline to best replicate pushing a wheelchairup a grade and another mile on an elliptical or bike for cardio endurance.

As sweat stains your shirt you only need askyourself - how many people do you know who will step in to push the person youcare for up the hills and across the years?

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

91% of caregivers use Facebook

2012-01-16T12:07:00.000-05:00

“91% of caregivers are using Facebook another 29% are using blogging sites …”

OMG I’m a tribal elder! While Facebook celebratesits 8^th birthday next month, I’ve been a spouse caregiver longerthan there has been Facebook or even Google, longer than smart phones, matterof fact - longer than either cell phones or home PCs. Telephones had cords andneighbors would leave hand written notes in the door, “going to grocery storethis afternoon, call if you need something.”

“… This provides a unique opportunity for marketers trying to sell healthcare products and services generally targeted tocaregivers or for those trying to build goodwill from a Pharma corporatestandpoint.”

A century and a half ago Edgar Alan Poe asked,“Is all that we see or seem but a dream within a dream?” – Is today all that wesee or seem but an opportunity to sell?

That’s a helluva a lot of people reaching outinto cyberspace to try and find others like themselves, or trying to juggle theshrinking time for research or simply staying in touch as caregiving isolates.

Shouldn’t such phenomenal usage statistics be aunique opportunity for sharing and caring rather than marketing? Or am I simplynaïve?

Through 22 years of spouse caregiving andjuggling basically single parenting I’ve marveled in awe of the technologicaland scientific advancements of those two decades.

Yet also wondered why there are still so manycaregivers? Why does Patti still have MS? Whatever happened to dreaming ofthings that never were, and asking why not? What if … we focused instead on ‘reducing’the need for and cost of Big Pharma, health care products and services?

Am I the only one who finds it more thanstrange that the last time a disease (Polio) was defeated was before thecomputer age?

In a society where each day more people walkaround staring into smart phones and walk right into Patti’s wheelchair, I amleft wondering about the odds of hope for all that we see or seem to ever beall it could be.

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

where sheep wear spandex / an MS outing

2012-01-10T20:16:00.000-05:00

Whether care giving or needing care sometimesthe best thing you can do is just go have some fun.

Laughing while spandex wearing sheep tried toeat Patti’s wheelchair we began our visit to the 2012 Pennsylvania Farm Show.

With 24 accessible acres(approximately 24 football fields) under roof, I cannotthink of a more wheelchair friendly outing for January. (and excellent pushing and walking exercise for me)

Enjoying two creamy chocolate milk shakes fromPA Dairyman’s Association in search of the butter sculpture we decidedto watch some honeybees in a glass observation hive at an exhibit by PABeekeepers Association. Soon we found ourselves in a conversation with abeekeeper about bee stings and medicine. While most visitors took a step backfrom the weird people talking about stinging themselves, several lingered,listened, and asked questions in a spontaneous discussion about Patti’seventually unsuccessful two years of Bee Venom Therapy for Multiple Sclerosis and the beekeeperwho had found genuine success for his Rheumatoid Arthritis through apiatherapy.

It’s hard to miss 1,000 lbs (454 kg) of butter and weeventually found the sculpture. After the week long farm show the sculpture isgiven to a selected dairy farm where it is converted into electricity.

After a couple hours of checking out and oftenvisiting up close and personal certainly every farm animal and crop in ourimagination – well, we were hungry … hey, the theme was “from the farm gate tothe dinner plate.”

Heading to the food court area we decided onLamb Stew from PA Livestock Association with frozen maple yogurt topped withmaple syrup for dessert from PA Maple Syrup Producers.

Lamb stew and frozen yogurt could not have beenmore dysphagia friendly and feeding Patti was no problem in the crowd ofhumanity, over 50,000 attend each day. Most people are shoving one thing oranother in each other’s mouth anyway under the ‘try this’ principle of fine farmshow dining.

Happy and fed Patti was ready for a longwinter’s nap.

Fortunately between MS fatigue and her memory lossshe would not have to fret about counting spandex clad sheep.

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

please take your medicine / MS and chronic illness

2012-01-09T14:37:00.000-05:00

“Please take yourmedicine?

50% of chronically ill people need a better reason

People hate medicines. It’s a fact of life. As many as 50% ofpeople with chronic illnesses don’t take their medicine correctly". Euro RSCG Tonic 5.0 Survey

Isn’t it ironic that one of the world’s topglobal marketing companies Euro RSCG (representing Big Pharma giants Novartis,Merck, Sanofi, and more) gets it …

… yet between Multiple Sclerosis symptoms ofmemory loss and mental confusion, Patti especially when prescribed something ortreated with something she does not like - often tinkers with the best laidplans of mice and caring people.

When not repeatedly monitored or involved withpeople for the couple hours she is supposed to wear her braces for dailylow-load, long-duration stretch for knee contracture therapy she simply forgetsand fidgets with braces. The pads with velcro x's half way down her shins shouldbe positioned over her knee caps. As pictured and worn they accomplish nothing.

Or recently one of her bedtime medications waschanged from a capsule to liquid. Yet liquid was so foul tasting Patti gaggedor choked reaching a point of refusing to take. Intervening as her POA Idiscovered no one really knew why the change, or had ever recommended a change.Back to a capsule all is well.

Outside looking in whether medication ortherapy, how often do we see or essentially say - here is ‘your’ problem, hereis ‘your’ solution, then sprinkle it with some encouraging mantra and suggest ‘justdo it’.

An ever growing mountain of challenges riseswith progression - who wouldn’t need ‘a better reason’ to takeor do something that at best might make you feel better than you are but lessthan you were.

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

Despite MS, to Spite MS

2012-01-04T12:09:00.000-05:00

How unique is this book? In the forwardJennifer Digman shares her research that there are 2,100 books on MultipleSclerosis but only 5 about Multiple Sclerosis love stories.

How unique was reading this book? Because of MSsymptoms Patti cannot read nor can she remember in the short term which in turnaffects attention span. Reading it to her pieces of chapters at a time over theholidays was beyond interesting, at times outside my imagination.

At one moment I’m reading to Patti about DanDigman who transfers his wife Jennifer from her wheelchair with the same oneperson unassisted transfer as I use for Patti except the guy has MS. Not onlyhas MS but runs an 8K race in 43 minutes – damn, this guy is in far bettershape than me and I do not have MS.

While Patti, who does have MS, makes skeptical soundsabout a think positive snippet in one breath, laughs along with Jennifer’s takeon something from their shared wheelchair view perspective in the next breath,and then abruptly decides she just wants to go to bed. MS attention span can bedizzying to deal with.

Spacing chapters are haiku poems by Judy Williams who also has MS. These capture Patti’s attention causing spontaneous commentsand observations, a couple times leaving me to see the poem differently.

If ever I doubted it, this experience ofreading “Despite MS, to Spite MS” with Patti has proven that Multiple Sclerosisis less a diagnosis and more a collection of Multiple Stories.

And, Now, We Pause for a Brief CommercialMessage . . . Click “Despite MS, to Spite MS” to order. A portion of the proceeds will benefit the National Multiple Sclerosis Society andCamp Courageous.

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

reindeer flying drunk vs MS

2011-12-26T13:39:00.000-05:00

Memories of Christmas morning broke new ground this year with aphone call from Patti’s care facility that she had been found on the floor nextto her bed about a half hour before dawn.

After physical and neurological examination sheappeared OK and had no complaints nor remembered anything. Of course MultipleSclerosis related memory loss, Patti’s MS short circuiting of pain neurotransmittersand probable shock confounded examination.

Incoming day shift found her during 7 AM ‘observation’.Overnight shift reported her asleep in bed at the previous hour’s 6 AM check.

Nursing staff wanted to keep her up and alert,just in case (some kind of concussion protocol), and on priority monitoring andevaluation. After a couple hours – a bruise beginning to develop on her kneewas the only observable concern.

Continuing with plans to pick Patti up forChristmas Day with family still seemed the best of possible ideas.

All things considered, in fact, Patti wasfiring on all cylinders right through the day. Patti never gets up as early as7 AM and has not gone without at least one mid-day nap for at least a decade.She was beyond impressive for someone who began the day falling out of bed, participating with over a dozen family members inChristmas Day festivities .

After about the umpteenth time of pestering herif she remembered anything about how she ended up on the floor - she turned to me while riding in thevan and said, “the damn reindeer were flying drunk.”

You got to love it!

For the First Day of Christmas, I do know thatPatti is getting the return of two bedside fall mats and that beginning lastnight her high-low mechanical style bed will be lowered to as close to the flooras possible when sleeping, about a foot (30.48 cm) off the floor.

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

no one can serve two masters / MS meds

2011-12-20T08:18:00.000-05:00

from today’s Washington Post:

Was my doctor loyal to me, or to the drug companies?

“…I knew that I had felt pressured by him to take medications. WhenI found that he had been paid six times my yearly salary to work for themanufacturers of those same drugs, my loss of faith was complete … having MS isdifficult enough. The last thing I needed was to worry about whether myneurologist was acting in my best interest…”

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

disability perspective / MS

2011-12-19T18:15:00.001-05:00

Q ...What is a disability perspective?

A ... disability perspective is a viewpoint that considers the needsand aspirations of disabled people and their families.

I offer as an example a tale of two stories...

“Christmas By The Lake” Boiling Springs, PA

When surreal becomes real, you’re just glad you were part ofit. “Christmas by the Lake” hosted bythe Boiling Springs High School Alumni Association could not have been a moreenjoyable winter outing.

Upon arriving we found wheelchair van accessible parking availablein front of Appalachian Trail Conservancy.

Lowering our van ramp we found ourselves also in the staging areaof the Pioneer Girls (a variation of Girl Scout Daisies) and parents. Our‘transformer’ van quickly became show and tell to young inquiry minds who inturn shared with us all their exciting adventures lighting the luminaires. Welaughed and smiled as the curious ‘heart of childhood’ embraced differences sohonestly and innocently.

Our push and roll around the lake was mesmerizing with hundreds ofreal luminaries plus a fully lit Christmas Tree floating in the lake. Patti inher wool cape, mittens, hat and buggy bag wheelchair lap blanket declared shewas “quite toasty” in spite of a ‘real feel of 29˚F (-1.6˚C)’.

When we needed to abandon the path and use the side of the streetfor a block, the reflective strip on Patti wheelchair lap blanket shone like abeacon in the lights of approaching cars.

Christmas music filled the air, Santa roamed about ho ho hoing and chestnutsand marshmallows were available for roasting over a fire pit. Everything was free including hot chocolate,hot dogs, and Christmas cookies. MS symptoms of dysphagia restricted us to hotchocolate and cookies but that was ‘no problemo’, they were delicious.

Horse drawn carriage rides were also available but we did notexplore as rarely are they easily accessible and Patti could care less - shealready has me, her trusty one-man open sleigh horse.
----------------

Now the same event as reported by mainstream media … Lights line the lake in annual Boiling Springs event
----------------

12% of Americans are affected by disability, add in theircaregivers and families and you are talking about a quarter to a third of anycommunity’s population.

Including disability perspective into news or promotions is notabout political correctness, it is inclusive and welcoming to people of allabilities.

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

dreaming of a purple Christ…MS

2011-12-17T11:02:00.000-05:00

Decades ago, maybe even the last time Patti‘walked’ into a church, we had a Christmas tree lit with all purple lights. Ouryoung daughter, along with all the children, was invited up to the altar totalk about Christmas. Long story made short the kids were asked about Christmaslights. When Megan offered purple, the minister corrected her pointing out thereis no such thing as purple Christmas tree lights.

A harbinger of what she would face in schoolwhen teachers would mis-teach Multiple Sclerosis either working from out ofdate textbooks or sharing mild MS as an example.

It would not be until her senior year of highschool that Megan actually had a teacher who personally knew what growing up livingwith severe MS was about. She, like Megan, had spent her youth with a Mom in awheelchair dependent on others.

Lack of awareness by others is part of livingwith MS as a family, affecting not only the mysterious diagnosis but equallysignificantly the daily life of all family members.

Holidays are a good time for common denominatorexamples. ‘Normals’ put a tree in a stand and admire, while living with MS you discoveryou need to secure the Christmas tree as stable as a grab bar. Patti has pulledmore than one tree down on herself while trying to be involved. For years I securedour conventional tree stand to a square of 3/4” (19 mm) thick plywood. Severalyears ago I simplified and bought a 30 lb (13.6 kg) steel stand with a leg spanof almost 3’ (.9 m) made by Bowling Enterprises of Bear Lake, MI.

Being no longer able to stand, legally blind, failingeye hand coordination, and down to use of only her right arm - were you tooverhear our ‘assisted’ decorating you might be surprised at the laughter ofinvolvement.

Purple is not only Patti’s favorite color but acombination of contradictions, hot red and cool blue. Perhaps not traditionalChristmas but then again living with MS as a family we jumped that traditionaltrack long ago.

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

winter wheelchair tips for caregivers 2011

2011-12-13T12:16:00.000-05:00

In a wheelchair Patti does not generate thesame body heat as a walking person. Cognitive impairment only adds to risk whenoutdoors in any weather.

Speculating on how fast it takes forhypothermia to set in is a fools’ question. … Prepare!

While winter embraces all, it does demandcaregiver / carer respect. Our story is about Multiple Sclerosis however winterweather does not discriminate over diagnosis.

Lower body for a non-ambulatory person is mostvulnerable. Last winter was a benchmark when we received a gift of a buggy bag® wheelchair lap blanket. All the time and stuff involved such as layers ofsocks, leg warmers, boots, and blankets disappeared. It’s almost like the BC /AD line in our history of winter living with MS. Not only did it quickly becomea winter mainstay but its all-weather features have made it all year rain gear.

It’s easy to say “wear several layers ofloose-fitting clothing”. However when someone is unable to dress themselvesthis can get beyond interesting. A sense of humor is most helpful.

For outerwear we depend upon a hooded woolzippered cape. Capes are easier for getting on and off when assisting someonein a wheelchair and a zippered cape simply increases options. Hoods are easy toflip up or down, cover everything except the face and are always attached.While wool is ‘old school’ it still has the unique ability to provide warmtheven when it is wet.

While a hat and scarf are often recommended Ihave concerns about mixing scarves and wheelchairs, though I have learned ofthe ‘infinity scarf’ for those wanting style without the ends that could catchin wheels. Hats work OK but are easily misplaced and can create some serious ‘electrichair’ styles.

Mittens ‘rock’! Rather than struggle to fit herfingers into gloves Patti just slides her hands into warmth.

Most importantly remember your carer /caregiver self especially your foot wear on snow or ice-covered sidewalks, ramps,driveways, etc. Fashion is arbitrary, falling is unacceptable.

Being prepared separates ‘disability forced hibernation’from enjoying winter to its fullest!

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

National Multiple Sclerosis Act of 1949

2011-12-09T00:25:00.001-05:00

“But to watch someone close to you become ahopeless, helpless paralytic and to know that medical science is powerless tohalt the progress of this disease, is something no person should be called uponto endure”

Mrs. Gehrig Urges Congress Finance Sclerosis Campaign

“May 11, 1949 Washington DC – Mrs. Lou Gehrig,blue eyed widow of baseball’s “iron horse” urged Congress yesterday to financea campaign against Multiple Sclerosis which cut down her husband at the peak ofhis fame.

Several victims of the crippling malady sat inwheelchairs listening …”

Republican Senator Charles Tobey of NewHampshire, whose daughter had MS, sponsored the bill. Tobey declared, “Wecannot take this thing laying down. There is enough money in this country totake care of this job. … God will hold us responsible unless we try to dosomething for them.” Emerging Illnesses and Society: Negotiating the Public Health Agenda” by Randall M. Packard

National Institutes of Health (NIH) opposed theformation of a separate institute for MS and the legislation never passed. Instead the idea was folded into a then unfunded directive to the Surgeon General to set up a National Institute forNeurological Diseases and Blindness and the National Institute for Rheumatismand Metabolic Diseases.

It’s interesting that media reporting of 62years ago interchanges MS (Multiple Sclerosis) and ALS (Amyotrophic Lateral Sclerosis)especially since ALS would become known colloquially as ‘Lou Gehrig’s Disease’.Then again public awareness remains a problem.

Most of all I am struck by the loss of moralimperative in approaching disease. Then a nation that not only believed “in Godwe trust’ but “God will hold us responsible unless we try …”

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

losing my mojo / MS caregiver

2011-12-03T00:08:00.001-05:00

Putting up this year’s Christmas decorations Iwas struck by how much I’ve lost my mojo through 22 years of Multiple Sclerosisspouse caregiving.

Medical science monitors progression of anillness or disability but ignores that the family also progresses. Then againhow do you measure downward economic and social mobility? How do you measure achildhood sacrificed? How do you measure the physical and emotional toll ofchoice? How can you even explain it when you put ‘care’ before all the otherunderstandable motives such as life, liberty, and the pursuit of the happinessof career, income, and all the trappings of normal life? … How do you measurethe loss of a caregiver’s mojo?

The following 20 second video captures what ouryard looked like at Christmas time in the earliest years of juggling MScaregiving and basically single parenting.

Believe it or not that’s even scaled down from mypre MS caregiving lawn decorations. Whether you are a fan of excessiveChristmas decorations or not, what is important is it was ‘me’ – I enjoyed it I- my mojo was running on full throttle.

Pictured below is now – two decades later …

While my blow mold plastic may be considered vintageto some, I’m quite sure I’m hearing polyethylene whispers about losing my mojo.

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

dysphagia, yes / dysfunctional meals, no

2011-11-28T12:44:00.001-05:00

Written from my perspective, the caregiver’sview, Patti has MS related chewing and swallowing challenges. Memory loss andcognitive impairments act somewhat like an eraser on Patti’s ability to relate herown experience.

How something is defined versus how it affectssomeone are really two different things.

A meal centered holiday like Thanksgiving literallyand figuratively brings dysphagia to the table.

This year was the first year I needed to feedPatti at the table following years of her increasing struggles to try to feedherself.

Amplifying this year’s focus on the challengesof chewing and swallowing I found myself the following day in an enlightening thoughpoignant conversation with a cousin about her own and her son’s challenges withdysphagia associated with muscular dystrophies.

In Patti’s case it’s about the central nervoussystem in theirs it’s muscular. Nor is dysphagia exclusive to MS or Muscular Dystrophies– Alzheimer, Parkinson, and strokes to name a few. Even some medications and agingitself can complicate the complex combination of voluntary and involuntarymuscles we know as chewing and swallowing and that most of us take for granted.

However none of us started out by taking it forgranted. Any parent fondly remembers their time spent teaching a baby to eatfrom a spoon or chew solid food.

Do we fondly or alarmingly view the reverse? How many people at the table can actually recognizechoking and assist?

In Patti’s case, MS related, for example shemay appear to be choking. Yet if familiar you would know that if a personappears to be choking yet talking (yes, even cursing and swearing) or coughing a dramatic interference such as Heimlich maneuvers might actuallymake things worse.

Speaking of the Heimlich maneuver how many atthe table actually know when and how to do it? What about with special circumstances, such as awheelchair?

Perhaps it should be about eating comfortably. Sharinga meal with people you do not have to educate or explain why you eat the wayyou eat and knowing they’ve ‘got your back’.

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

“Think you can make it, pilgrim?” / MS caregiver

2011-11-22T13:00:00.000-05:00

When the 53 surviving Pilgrims celebrated theirsuccessful harvest in autumn of 1621, Isuspect that even in their wildest imaginations none could ever have foreseenthe future rite of passage for kids and parents known as the schoolThanksgiving play.

Certainly Patti never imagined she would watch seatedin an electric scooter as our daughter played a Pilgrim mother who gave birthonboard the Mayflower.

Here in the now, this will be the 22^nd yearthat Thanksgiving is infamously intertwined with the dawn of living with Multiple Sclerosis as a family.

My memories of morning cooking aromas, leaf piles, and the Macy’s Parade on the TV were shatteredlooking into the fear in Patti’s eyes as she awoke that morning in 1989 realizingshe could not walk, and could barely see or talk.

Waking up Thanksgiving morning should not be awatershed moment in one’s life.

Four years earlier Patti had a brief period ofnumbness and tingling in some fingers. With symptoms ending sooner than tests, adiagnosis of “probable” Multiple Sclerosis while devastating in the momentseemed less probable as time passed.

Years passed, no symptoms returned. Life wasgood; homeowners, two jobs, two cars, ‘two cats in the yard’ and a healthyhappy daughter.

Absolutely underprepared for what was happeningthat morning, somehow I found Patti’s neurologist’s number and called. Duh! It wasThanksgiving morning of course he was unavailable. An associate returned mycall, arranging hospital admission.

Simultaneously our 18 month old daughter wasstirring and ready to get up. While I had been as involved, if not more thaninvolved, for a guy in the late 1980’s I had not been the lead parent much less everhave juggled parenting and caregiving.

I never felt more alone and overwhelmed.

“Think you can make it, pilgrim?” John Wayne

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

Economic Costs of Multiple Sclerosis

2011-11-19T09:35:00.001-05:00

(guest post by Elaine Hirsch)

According to a 2010 report entitled “Global Economic Impact of Multiple Sclerosis” compiled by the Multiple SclerosisInternational Federation, Multiple sclerosis creates substantial economic costsfor the economies of nations where there are large numbers of MS patients.Statistics from the report show that fifteen countries, including the UnitedStates and Germany, reported an average annual cost of $41,335 or more for eachMS patient.

A study published in the same year, “Economic Impact of Multiple Sclerosis in 2010,” sponsored by Multiple Sclerosis ResearchAustralia, showed the economic impact of MS on just one national economy.Australian researchers, using an average cost of $48,945 per Australian patientsuffering from MS, calculated that Australia’s 21,200 MS patients cost thenational economy a yearly total of approximately $1.038 billion, up 58 percentsince 2005.

Measuring the medical costs of MS patients isnot easy, because the severity of MS symptoms varies from one patient to thenext; some patients having only transient attacks, such as occasional blurredvision and fatigue, while other patients may become partially or completelyparalyzed, as described in “Multiple Sclerosis: Just the Facts,” a brochurepublished by the National Multiple Sclerosis Society of America.

Australian researchers compensated for thevariation among MS patients’ conditions by breaking down care costs into manysmall categories. Prescription medication and other medical necessities, suchas nursing services, caused the highest costs for patients, but the cost ofinformal care, provided by family, friends and other private caretakers, jumpedfrom $99 million in 2005 to $145 million by 2010.

The report noted that tabulating dollars foritems such as hospital stays did not show the true human cost of MS inAustralia. Commonly misunderstood, economic costs typically extend beyond thedirect inputs to patient care for MS patients. For example, researchers statedthat the “cost of informal care contributed 14% of the cost per person with MSwhile [employment] productivity losses contribute[d] 48% and was the highestsingle element of cost.”

The financial cost of time spent by family andother helpers caring for MS patients and the loss of employment opportunitiesexperienced by MS patients because many patients and caretakers are forced intoearly retirement are not as visible as money spent on wheelchairs, but thesefactors represent enormous emotional and financial losses to the patients,their families, their friends and the Australian economy, losses that areescalating as the number of MS patients steadily increases.

(Elaine Hirsch is kind of a jack-of-all-interests, from education and history to medicine and videogames. This makes it difficult to choose just one life path, so she is currently working as a writer for various education-related sites and writing about all these things instead. She is currently a writer for a master's degree resource.)

a time for ... truing (wheelchair wheels)

2011-11-16T10:29:00.001-05:00

For several weeks, the right wheel on Patti’swheelchair had been misbehaving, increasingly rubbing against the chaircreating everything from annoying sounds to resistance.

More significantly for Patti, the only arm shecan still use is her right and this one ability could not be compromised.

Chasing my tail, time and effort wascontinually misdirected looking for solutions whether through her care facilityphysical therapy department, researching replacing the wheel and or wheelchairitself and banging heads with insurance, or even tinkering myself. (Whilewheelchairs have been part of family life for over 15 years, I’m not a realmechanically oriented person and tend to ‘argue’ with inanimate objects.)

Confounding the process, Patti in the chaircould never remember the problem.

“If you don't feel you can handle simplewheelchair repair preventive maintenance yourself, you should always ask afriend, neighbor, or family member to help you.”

Visiting with Patti’s family on Sunday herfather and brother took a crack at the wheel and I entered a world I never knewexisted - the land of spokes.

Her brother went right to “truing the wheel”. Spokesactually push and pull a rim while a wheel rolls. Proper tension keeps thewheel round and straight. A younger version of him learned these skills workingon motorcycles.

Lacking a proper shop, instead spinning thewheel on the wheelchair axel as the chair lay on its side, he found the highspots in the rim and corrected by tightening and or loosening correspondingspokes in low spots. … and all this accomplished while Patti sat and playedgames at the table in another wheelchair with her Mom and our daughter. Truingtime can be family time.

Patti originally chose her wire wheels becauseshe liked the look. Mag wheels, I’velearned, are allegedly maintenance free while wire wheels require spokes to beadjusted periodically to insure proper tension. My Bad!

While Patti’s wheelchair now comfortably rolls,I’ve learned that even this caregiver approaching his 22 anniversary of MScaregiving can use some truing - “ask for help” rules!

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

We are … what we remember

2011-11-11T11:43:00.001-05:00

Caregiving and Multiple Sclerosis can bump intosemantic walls. Short term memory loss, cog fog, or dementia may be just words tosome, but to others - them’s fightin’ words.

Yet MS symptoms can affect intellectual andsocial abilities. Sometimes this is easier to demonstrate as a caregiver througha thread of current events.

Patti surprised me Tuesday evening when I pickedher up for an outing asking me about the Penn State scandal which I had read toher about on Monday. I try to make the time to read newspapers to her and askher questions about the stories as an ongoing informal cognitiverehabilitation.

She never has recall over a day anymore, I wasstunned. Yet before beginning a victory dance I realized that Patti is a PennState alum and both long term and short term memory must be coming together insome kind of cognitive cauldron here.

Additionally ‘we’ had attended several footballgames together at Penn State's Beaver Stadium in the distant past. I am a U of Maryland alum and our respective universities had a football rivalry.

As a visitor I had always found Penn State a worldunto itself. When 100,000+ people begin shouting in sync their signature shoutand response cheer “We are … Penn State” it’s eerie.

Intuitively, now in 2011, I experimented withtalk radio while driving. Needless to say the topic was the Penn State scandal.

Patti was so involved with the program I wascaptivated. Not only was she following it but remembering previous callers and periodicallyverbalizing her own two bits. Most impressive to me was her focus on thevictims not the fall out. It was frustrating to see flashes of the person thatwas, yet discover she could not tell me what she had just had for dinner orwhere we were going.

Could this cauldron of long and short termmemories keep breaking through? Picking her up after a 48 hr gap, Patti rememberednothing about it. It was all new to her.

We are … what we remember.

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com

ghosts of caregiving past

2011-11-09T15:13:00.000-05:00

What do a 19^th Century stone mason,a painter, an engineer at a gunpowder plant, and a fireman have to do withNational Family Caregiving Month? Probably not much - contrasted to their wiveswho gave birth to, raised, and kept house for families with an average of 7children, long before disposable diapers or indoor plumbing.

Yet without them I would not exist, these weremy great grandparents. Born before the US Civil War some were immigrants, some fromslave owning families, and some left home as teens to become ‘servants’. I’vebeen stalking them with a 14 day free trial of Ancestry.com. However as spousecaregiving has dominated 36% of my life, eventually my eyes always look forclues.

“Caregiving is not new,” said Emily Abel, aprofessor at UCLA. “It has long been a normative experience in women’s lives.”In 19th century America it dominated their lives from “girlhood to old age”

21^st Century statistics report womenmake up 66% of caregivers. While I may be ‘the 33%’ now it was not that waywhen it began over two decades ago. Statistically males represented 10% ofcaregivers around 1990 and damn lonely especially lacking any traditions,literature, and frankly head butting against societal perceptions of male andfemale roles and skills. Simultaneously I was juggling basically single parentingour then toddler daughter. Even popular culture at the time portrayed men asbumblers in maternal roles.

Back to the future, President Franklin Piercevetoed health care reform legislation in 1854 arguing that the law violatedstates’ right position. We are STILL arguing over what we expect our federaland state governments to do about health care.

With medicine able to prolong life wherepreviously terminal (injuries, accidents, illnesses, war wounds…) - disabledAmericans were reintegrated into communities and wheelchairs appear. The first USpatent for a wheelchair was granted in 1869.

Sometimes a glance backwards frames perspectiveand more importantly reenergizes the potential ahead.

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com

almost stone age caregiving

2011-11-02T11:26:00.000-04:00

Keep in mind reading this entry that for the people referenced, today begins their 5th day without electrical related services.

In one New Hampshire town, 140 or so elderly and wheelchair using residents are trapped on the upper floors of a building because the elevators aren’t working. No power real concern for wheelchair-bound on upper floors

In Pennsylvania, “A tractor motor turns the generator that powers the breathing machine …She has Lou Gehrig’s disease, and her tenuous lifeline has been in place since Saturday. That’s when a rare October snowstorm knocked out power to homes …” Power outages from Saturday's snowstorm are threat for people with medical problems

In New York, “Visiting Nurse Service aide rushed around the dark house looking for a flashlight to set up a backup device that does not need electricity … It was already too late.” Halloween weekend snowstorm outage claims Bronx great-granny; lost oxygen during power failure

Are home generators the answer if you live with medical needs?

In Connecticut, “It is the latest of three carbon monoxide deaths since Saturday's massive winter storm” Carbon Monoxide Claims Another Life

In Massachusetts, “The state fire marshal says two people are dead in Palmer in what is believed to be carbon monoxide poisoning” 5 people killed in Mass. after October storm

Think having a ‘medical certification of emergency’ on file with a power company means something? – A spokesman for First Energy, parent company of Met-Ed, said “medical declarations are noted by the company but the thousands of outages from the storm make prioritizing a specific customer impractical.”

Probably too often I use a phrase “the tip of the iceberg”. Media focuses on the most dramatic. Countless others, among the over 1.5 million still without power, challenged with living with disabilities, chronic illnesses and of course their caregivers are also facing their 5th day of almost stone age living and caregiving.

November is National Family Caregiver Month and I for one find these unsung efforts heroic.

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com

adapting Halloween, what's this? snow!

2011-10-31T15:05:00.000-04:00

Sometimes adapting to living with Multiple Sclerosis life can be…

- captured in a movie minute

When Multiple Sclerosis symptoms impair viewing parades we experimented successfully with visiting 5 local Halloween parades while they assembled

- acknowledged

... attending our local MS Society Chapter Annual Meeting and Recognition Celebration, Patti’s primary concern throughout the event was “I just want a ciggie” while I was giving thought to borrowing a page from the Legend of Sleepy Hollow and throwing a jack-o-lantern at the speaker if she requested one more time for honorees to “please stand”. It’s all about perspective.

- or simply enjoyed
... as 6” (15.24 cm) of snow fell on Saturday of Halloween weekend followed by a 54˚F (12.2 ˚C) Sunday for playing while it lasted.

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com

how do you measure the years

2011-10-24T12:12:00.000-04:00

A MultipleSclerosis Blogger who uses poetry as her medium recently wrote

Does MS Ever Make You Think Of …

…the career you left

how much money you have spent

the friends that you miss…

Inthe ‘now’, MS symptoms of memory loss and cognitive impairment cloud Patti’sthinking of …

WhileI can remember for us both, can anyone really remember the intangibles of lifefor another?

Maybeour time with MS is better told as then and now?

Thenthere were only two main types of MS, now there are four.

WhenPatti was hospitalized with her first major MS exacerbation US troops were busyinvading Panama while Iran and Iraq warred between themselves in the MiddleEast.

Ourstory preceded disease modifying drugs for MS. None existed then, today thereare 6. Patti’s neuro tried to get her into the original Betaseron FDA trialshowever she was rejected as ‘too progressed’ – she had foot drop.

Someonenamed Bush has been President of the United States for 12 of the 22 years Ihave been a MS caregiver.

OurMS story predated the home computer age. We went to our local public library toread the New England Journal of Medicine to research and learn about MS.

Thenthe National MS Society called the debut of their major fundraising program the“MS Walk”, now it’s called “Walk MS”. Over the 22 years they have raised $623 million nationwide.

Then “RainMan” won the Oscar as best picture, this year, “The King’s Speech” - interestingbookends of challenges as art.

Thenwe could take scenic drives through Fall foliage, now with progression of MSvisual impairment – well we just enjoy it differently …

… onwheelchair accessible trails with ‘someone’ throwing piles of leaves into theair so they fall around us.

“In daylights, in sunsets

In midnights, in cups of coffee

In inches, in miles

In laughter, in strife

In five hundred twenty-five thousand six hundred minutes

How do you measure a year in the life?”

“Seasons of Love” RENT

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com

caregiving IS actually part of life

2011-10-21T15:01:00.000-04:00

Leavesfall like reminder notes. Next month will be my 22^nd anniversary asa MS spouse caregiver.

Extraordinarycare needs find us in this care facility era chapter of our story; however anursing home is never a solution just another season.

Family,in my experience, should not only continue to be ‘hands on’ involved inassisting with the activities of daily living but the driving force of the continuingspontaneity and intangibles of life.

Staying‘hands on’ brings consistency to care. For example by transferring, preparing,and tucking Patti into her bed by myself the majority of nights each week notonly is that consistent for Patti but enables me to consistently be involvedwith staff. Mutual training and motivation never hurts.

"It'sjust like sending your kids to school and never talking to the teacher,”says Pat Kelly director of the West Virginia Health Care Association. "The teamaspect is key."

Simultaneously,life is about more than just assistance with activities of daily living. Lifeis never routine, it’s the unexpected even challenging that gives color to anyday.

Facilities,in my experience, do a good job trying however they have to program for acommon denominator. Family customizes.

SinceI tuck Patti in the majority of nights I try to make each visit an outing. The‘what’ is not as important as the spontaneity.

Progressionof Patti’s MS symptoms demand concessions in planning and time involved, everadaptive is essential.

Halloweenparades are a century old Pennsylvania Fall tradition. However Patti can nolonger see costumed marchers in the middle of a street and prefers to go to bedlong before most parades end – so we experimented by visiting parades beforehand,while they were assembling.

Allin all it ended up a fun and free way to enjoy several Fall evenings. … andmaybe just maybe by our presence, demonstrate that caregiving is actually partof life.

"Creatinga home filled with spontaneity is foundational to transforming nursing homeculture." Susan Misiorski, Living in a Nursing Home: What Matters Most (IV)

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com

Was long term care insurance a CLASS act?

2011-10-16T15:01:00.000-04:00

As asociety, I am convinced that we cannot even grasp much less be prepared for thecrushing cost of long-term care.

Ismoney the only definition of cost? Families are changed forever, what about thelives lived and not lived?

Howdid we even get to this insurmountable gap between medical science and qualityof life?

OnFriday the Obama administration informed Congress that offering long term careinsurance as part of Health Care reform was not “budget neutral” and thereforunsustainable.

Secretary Sebelius’ Letter to Congress about CLASS (Community Living Assistance Services) and attached Health and Human Services Report.

Ofcourse with the gnat like attention span of our society, this story barely madeit out of a 24 hr news cycle.

The ‘unsustainability’of the Community Living Assistance Services Act is not a solution. The challenge of longterm care is not going away.

Here’sthe bottom line - EVERYONE will one day know or love someone who can no longercare for themselves …

… andwe do not have a clue how we will do it.

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com

Global Accessibility Map

2011-10-13T15:40:00.000-04:00

Strokeof genius if you ask me! To be able to check on genuine accessibility beforehand – unbelievable!

“Whena person has a disability, whether it’s a visual, hearing or mobilitychallenge, you face struggles every single day,” Hansen said. “One of thethings you don’t want to have to deal with is when you want to go somewhere tothen have artificial barriers that limit you from being a full part ofsociety.”

New website rates how accessible buildings are

“UsingGoogle Maps as a base, the website allows users to rate businesses andlocations based on how accessible they are for people with disabilities. Thewebsite includes separate rating criteria for people with mobility, sight, andhearing issues.”

GLOBAL ACCESSIBILITY MAP

Launchedjust yesterday, the example I pulled up is the Smithsonian Museum of Art in WashingtonDC. As a caregiver it is revolutionary that not only can I find out in advanceabout specific accessibility details but even companion care restrooms!

STARTUSING and filling out details of places you know!

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com

Halloween Parade (accessible parading)

2011-10-12T01:36:00.000-04:00

Whilewe’ve attended the annual Mechanicsburg Halloween Parade for almost 10 years,driving there Patti could not remember ever having gone before.

Questioningher further back in time I discover she can remember snippets from over adecade ago and the epic ‘Trick or Treat’ nights from our former home in CollegePark, MD. – Our home used to host over 225 trick or treat visitors, theatricaleffects and music all MC’d by me dressed up as Santa. – We were Halloween!

Progressionof Multiple Sclerosis symptoms sure can affect sharing ‘traditions’. Even a 7PM start is late for someone who prefers to go to bed by 7:30 PM.

Nowon the other hand one thing about memory loss is I do not have to get too hungup on tradition or routine. Working exclusively in the now does allow forcreativity. Rather than sit and wait for the parade to come to us why not abandontradition? It was a 68˚F (20˚C) evening in October, why not arrive early and pushand roll around to visit the floats, cars, and participants while they were assembling.

‘Accessibleparading’ worked better than expected as Patti got close enough to actually seeand interact. We pushed and rolled through the staging streets (and streetsalways trump sidewalks) visiting with groups as they put on finishing touches,found ourselves in the middle of a zombie dance rehearsal, and a dancing cowgave Patti a beach ball.

Suddenlyon some unspoken cue people assembled into parade formation and we were sweptforward in a marching band between bass drums and cymbals as pyscho-clowns onskateboards zoomed by on both sides.

Whilethe band turned left we went straight and escaped laughing.

Whetherremembered or not laughing is still fun!

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com

cruel and unusual SOMETHING

2011-10-10T12:18:00.000-04:00

Googling, I stumbled upon “a collection of essays about the wellspouse experience and what I believe society should do about it” by Marion Cohen.

“Cruel and Unusual” (2005)is an unpublished book she “decided tomake freely available”. You need only Adobe Reader, or other applicationcapable of reading PDF files.

Notonly does it provide insight to home caregiving but transition to the carefacility era over her 26 years as a Multiple Sclerosis caregiver.

Timeis everything for a caregiver / carer, and at 89 pages, “Cruel and Unusual”does not take a ‘War and Peace’ commitment of time to read yet on the otherhand raises enough questions, shared experiences and food for thought aboutcaregiving in our society to fill volumes.

Somechapter headings (in her own words):

WHATCAREGIVERS DO (a kind of Care Giving 101, especially for those who don’talready know)

SUGAR-COATERSAND OTHER NON-SOLUTIONS (such as referring to the patient as “the loved one”)

NOTEVEN VOLUNTEERS (the plight and feelings of family members of nursing homeresidents)

THESEX WORKSHOP (how some well spouses are seeking love and life elsewhere -- thejoys and limitations of that)

…also it’s an intriguing peak inside the early years of the Well SpouseAssociation.

Forveteran long term MS caregivers it may read like a visiting preacher preaching to the choir, butfor ‘others’ out there unfamiliar with the details and stresses of long term care, “Cruel and Unusual” could be the proverbial whack upsidethe head - “The conspiracy of silence leads, or is tantamount to, cruel andunusual SOMETHING”.

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com

pancreatic cancer, apples, and memories

2011-10-07T17:07:00.000-04:00

Memories cascade or atleast mine do. Pancreatic cancer screams from headlines as Steve Jobs dies atage 57. It’s also been two decades since actor/producer Michael Landon’s publicbattle with pancreatic cancer and death at age 54.

Media reports his familyclaims Jobs died “peacefully”. I hope so, my Dad died from pancreatic cancer atage 75, fourteen years ago. I can never forget those long final hours ofpassage into final freedom from pancreatic cancer spent with him.

Memories also link. Myparents first met a home computer, when a used Apple II was gifted to them byfamily friends.

In their 60’s you know howit goes when your parents ask, “Patrick, can you figure this thing out?”

My first impression was ofa mutant home appliance and IMHO with its two disc drives and DOS commands wasabout the most complicated thing I had ever encountered. Of course I had noexperience, no manual, and as I remember at the time the “why” had something todo with making Christmas card lists easier.

Anyway those Christmas cardlists never got easier, my Mom suffered a massive stroke and my Dad was hercaregiver for over a decade before she died followed by his own death just fourmonths later. Totally ‘old school’, computers and/or Internet never played arole in their lives or caregiving. I never exchanged an email with my parents.

Years later when I enteredthe home computer age, several years after entering the Multiple Sclerosiscaregiver era, I never forgot how complicated that old Apple II was and embracedMicrosoft Windows. I’m a PC!

Now for our daughter,Apple computers were synonymous with school. I suspect like many of hergeneration she was raised bi-OS, fluent in both Apple and Windows operatingsystems.

All three of ourlives have been filled with wonder and enjoyment through Jobs’ Pixar Studios.

Today, people with theirfaces buried in Apple iPhones walk into Patti’s wheelchair with increasinglyregularity.

“To infinity and beyond!” – by all means, justplease try to watch where you are walking.

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com

adult sippy cups

2011-10-04T14:42:00.000-04:00

Entwining their arms theyshare a toast ... somewhere, just not in this story.

Instead I reach over tohelp Patti hold her adult sippy cup so she can enjoy her hot chocolate. Takinga sip of my own mocha I realize hey I’m drinking from an adult sippy cup too.Maybe this whole disposable coffee cup thing is really just about preparing usall for the adult sippy cup era ahead.

Curiosity got me Googling -paper cups have been around since the beginning of the 20^th Centurybut let’s face it lids were the quantum leap forward when in 1967 Alan Frank ofPhiladelphia filed a patent for the first tearable vented plastic lid forcoffee.

So with recent temperaturesnearer 40˚F(4.4˚C) we stopped by Sheetz “Specialty Coffeez Expresso Bar” for Patti’sfavorite ‘dark chocolate hot chocolate’. Not only can we get affordablespecialty coffee and hot chocolate but Sheetz may be the most convenient stopon the planet. Convenience trumps when you are a caregiver and their accessibleparking, even van accessible parking, is welcoming not an afterthought.

Depending on whether we’reheading home for an outing or how Patti’s MS fatigue is doing I may transferher hot chocolate to a travel mug that has become perfect for her for both hotand cold beverages. As a designer travel mug it’s a perfect disguise for anadult sippy cup and there are times the handle grip is most helpful for her.

Straws once were a cornerstonebut MS progression with decline of eye hand coordination, increasing visualimpairment and simply problems associated with the muscle control involved in sippingthrough a straw has made them increasingly obsolete. Summers ago I wrote anentry, immunity to ‘brain freeze’?, of Patti inhaling frozen drinks. This pastsummer she struggled to use a straw much less hold a drink.

Sure somewhere a coupleentwines arms and toasts and somewhere else one person reaches over and helpshold another’s cup. The end result is the same, a smile.

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

MS caregiver survey

2011-09-28T23:55:00.000-04:00

Received an interesting email:

“Dear Patrick,

We, the Southeastern Institute of Research (SIR), are conducting an important research study on behalf of the National Alliance for Caregiving and the National Multiple Sclerosis Society. The study includes a survey that investigates issues related to caring for someone with MS and the needs of family and friend caregivers. Would you be willing to post a link to this important survey on caregivinglyyours.com? …”

www.sirresearch.com/MScaregiver

For those who know me well, know I live and learn by questions. Noting a name and phone number at the bottom I called Heather Marron, Project Manager for SIR. She is indeed a real person and patiently fielded my questions.

More importantly I took the survey. It takes around 15-20 minutes though you can always save and return. It passed all scrutiny by my AVG anti-virus and anti-spyware defenses; ever the ‘doubting Thomas’ I also ran Spybot upon completion of the survey and it too found no prying eyes left behind. No name or contact information is requested, as anonymous and confidential as anything can be in this age.

Most importantly it really is an extraordinary survey. I’ve never seen anything like it and long overdue when it comes to trying to study us extremely diverse and unique MS caregivers.

“Responses will be combined with those of other caregivers and will be shared with the National Alliance of Caregiving and the MS Society so that they can learn how to better meet the needs of those caring for people with MS.”

Please note you must complete the survey by Friday, October 21^stand “for the purposes of this research study, caregivers are defined as family or friends, not professionally-paid caregivers.”

Of course if you have questions (and believe me I understand) Heather said it was fine to pass along her contact information: Heather Marron, Project Manager at SIR at hmarron@sirresearch.com or 800-358-8981 (ext 28) … or Anna MacIntosh, SVP of Research Operations at SIR at anna@sirresearch.com or (800) 807-8981 (ext. 18).

Take it and spread the word!
Caregivingly Yours, Patrick Leer
videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com

reflections on Pat Robertson’s remarks

2011-09-23T13:40:00.000-04:00

“Sometimes it lasts in love but sometimes it justhurts instead” (‘Someone Like You’ by Adele)

While Pat Robertson certainly kicked a hornet’s nestwith his recent remarks about divorce and caregiving, hopefully when thebuzzing settles down more people than before will have given some thought to thechallenges of long term spousal caregiving.

Robertson was specifically discussing one person’s situationof Alzheimer’s caregiving, yet other chronic illnesses and/or disabilities,including Multiple Sclerosis take a toll on relationships. d-i-v-o-r-c-e multiple sclerosis

What caught my attention was Robertson’s caution thatthe divorcing spouse would have to ensure custodial care and somebody looking after theirwife or husband.

The spouse caregiver should have a plan ensuring continuingcustodial care and somebody to look after their wife or husband NOW, if notalready. What’s divorce got to do with it? I’d bet that far more people areleft without somebody looking after them due to overwhelmed caregiver plansthan divorce. Yet where’s the buzz or better yet the help with this concern?

Considering oneself the ‘well’ spouse or ‘ablebodied’ spouse is always a touch delusional. Statistically the caregiver lifespan will be shorter and unquestionably abilities and resources will onlydecline. Butterfly effect MS caregiving

A care plan based on the assumption of immortalityand invincibility is risky. Or as Dr. Phil might ask Achilles, how’s thatworking for you?

Even though Robertsoncertainly also pushed the hot buttons of companionship, love, religion andintimacy, IMHO he concluded wisely “… the last thing I would do is condemn youfor taking that kind of action.”

20 some years ago I remember typing onto a Prodigy‘bulletin board’ that I would never judge another spouse caregiver.

This planet is too full of people judging people andnot enough caring.

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com

pushing and rolling through nature's rage

2011-09-21T10:49:00.000-04:00

How chronic illness / disease or disability was leftout of those biblical plagues is beyond me. I suspect it has to do with myHallmark conspiracy theory about ‘get well SOON’ cards. People just do not doduration well. Bring on the frogs and boils just as long as “the Lord spakeunto Moses” – how long?

Not to make light of natural disasters but they dohave an end and involve words like recovery. Multiple Sclerosis and/or MScaregiving do not involve endings nor recovery. One of the intangible aspectsof caregiving is ‘crises management’, 24/7 year in year out.

Recently we rolled and pushed our way through twoweeks of natural disasters: earthquake, hurricane, tropical storm, and recordflooding with our wheelchair accessible van ramp lowering like the proverbialstaff of Moses.

While the East Coast felt and freaked over Virginia earthquake we foundourselves out enjoying an afternoon outing in Valley Meadows Park, eerily empty of people.

We were intrigued by wheelchair switchbacks builtinto the Forbes Path where grade was steep. Wheelchair ‘friendly’ is a world ofdifference from wheelchair accessible.

Later after Hurricane Irene finished trying to huffand puff and blow the town down, it was time for rollin’ along the sidewalks.

While Tropical Storm Lee was busy dumping nearly afoot of rain over several days, well … there were always home improvement megastores with acres under cover to roll around in. Considering the streak of natural disastersthey were also community social centers - and already decorated for Halloween!

I need to give thanks to Cumberland County Department of Public Safety Facebook Page which mademoving about in real time so easy and safe.

While safety is always first, living with MS can beisolating under normal circumstances. When all anyone is talking about isearthquakes, hurricanes, and floods mix that in with MS symptoms anddisabilities and it’s too easy to add worries. Sometimes you have to lower yourramp and stick your head out.

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com

Tax Benefits for Caregivers

2011-09-15T11:18:00.000-04:00

With politicians makingdaily headlines thumping their chests over benefits and tax cuts I found ittimely that ‘ASK MEDICARE: information to help you care for others’ would offerthe following factual information in their September/October e-newsletter.

"If you provide care andfinancial support, you may be eligible for certain tax breaks or otherfinancial help. You may want to look into:

* Multiple Support Declaration

* Deductions for qualifying relatives

* Deductions for medical expenses

* Dependent Care Credit for paid caregivers

* Payments (in some states) for caregiving work

* Public benefits available in your state

Qualtity Care Finder (informationon hospitals, nursing homes, home health agencies, and other facilities acrossthe country)

Help in Your Communityfrom Aging & Disability Resources Centers (ADRC) connect to the ADRC inyour area with the Administration on Aging's Eldercare Locator."

With medical insurance gonewild and not every one honest when it comes to our more vulnerable population, adviceis helpful.

"Medicare plans can startmarketing for Open Enrollment on October 1. Protect yourself by knowing therules about what Medicare plan sales agents can do. Sales agents CAN'T:

* Come to your homeuninvited

* Approach you inparking lots, hallways or lobbies

* Offer you a gift worthmore than $15 to join their plan

* Provide meals at salespresentations

* Try to sell you a planat educational events

If you know of an agent that's not following these marketing rules, sendan email with the details of what happened to our Surveillance Mailbox atsurveillance@cms.hhs.gov. "

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com

respite care awareness

2011-09-13T17:11:00.000-04:00

Respite care is a ‘giftof time’, a ‘break’, a provision of short-term, temporary relief to those whoare caring for family members. It’s about addressing caregiver / carer burn-out.

Respite care ‘awareness’is about education. Unless you have walked in carer/ caregiver shoes likely youdo not have a clue how consuming and overwhelming it all can become – or moreimportantly what can you do.

“WHEREAS, Families arePennsylvania's most important and constant care providers for individuals withextraordinary care needs, such as developmental disabilities, physicaldisabilities, Alzheimer's disease, mental and emotional disorders, and extrememedical need; and

WHEREAS, this importantjob can become stressful for the individual providing care, particularly due tothe often constant demands -- many times it is a 24-hour a day commitment;

WHEREAS, citizens whoprovide respite care to persons with special needs are providing an importantand highly valuable service to those individuals and their families, and totheir communities.

THEREFORE, In recognitionof the unique and important service that respite caregivers offer to the manyselfless individuals caring for Pennsylvania's most vulnerable population, I,Tom Corbett, Governor of the Commonwealth of Pennsylvania, do hereby proclaimSeptember 25th through October 1, 2011, RESPITE CARE AWARENESS WEEK throughoutthe Commonwealth”

I confess that my ownawareness of ‘respite care awareness week’ was only because Cumberland Perry Respite gave me a heads up a week ago. A designated awareness week seems an opportunity to promoteawareness in general and more importantly services for caregivers of any specificillness/disability. However I was surprised (and not surprised) to discoverafter a Google search only one related event in Pennsylvania, a Respite Resource Fair in Pittsburghsponsored by United Cerebral Palsy.

Admittedly there hasbeen an earthquake, hurricane, tropical storm, and record flooding to dominate bothlives and the news, yet the sounds of silence from the Pennsylvania chapters of major non-profitdisease and/or care organizations is rather deafening. Not unlike the soundthat usually follows the mention of the phrase ‘respite care’.

***updated 9/19 - Respite Care Awareness Week Proclamation from Cumberland County Commissioners

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com

9/11 I was standing in line ...

2011-09-10T23:57:00.000-04:00

10 years ago on themorning of September 11^th I was standing in line in at the PostOffice waiting to buy stamps.

The last guy enteringthe line started talking about hearing something on the radio about a planecrashing into the World Trade Center.We in line reacted more like Robert De Niro, “You talking to Me?” and refocusedour impatient glares on postal clerks.

Patti’s MultipleSclerosis progression both physically and cognitively even 10 years ago haddriven a coffin nail in home care help and I had decided to try to juggle itall; full time homecare, basically single parenting and somehow work.

Frankly from a morningof getting Patti and Megan up and dropping Megan at middle school, I wasoverwhelmed and it wasn’t even 9 AM. Living then in the Maryland suburbs of Washington DC my mind was in athousand places waiting in line that morning.

Returning home to carefor Patti who was watching morning TV, I asked her about it. She was aware ofno plane crash. Even then with her MS memory loss milder I still could not besure whether she simply had forgotten or it was not news, it did after all seemincredulous.

Turning my attention tothe TV – the world changed before my eyes. A second plane hit the world Trade Center, 30minutes later a third plane crashes into the Pentagon (less than 10 miles away asa plane flies), a forth plane crashes in Pennsylvania as passengers battle terrorists.

Get our daughter fromschool was my knee jerk reaction. Calling the Principal she explained all weresafe and all classes were watching TV news together. Where better to processthe unimaginable than with peers and teachers? If anything changed or Meganwanted to come home, she would call me. I couldn’t ask for more than that.

Somewhere in thetimeline we nearly jumped out of our skins as our entire house shook from sonicbooms as air force jets from nearby Andrews AFB roared into the skies over Washington DC.

Caregiving for perhaps the only day in 21 years became secondary.

Caregivingly Yours, Patrick Leer

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com