what a difference a day makes

   Imagine teams of volunteers arriving at the homes of people living with Multiple Sclerosis and meeting their needs and those of their family on a single day. I have hallucinated such a fantasy many times over my 20 years juggling MS spouse caregiving, basically single parenting and everything else.

   It is such a treat to read that through a pilot program that this now actually happens.

“If you are living with MS and need a helping hand around the house, MS Service Day Volunteers from (Central PA) Chapter will divide into teams and complete projects and provide friendly visitation to people living with MS.”

What a Difference a Day Makes 

   Projects can include services to the exterior or interior of the homes like:

yard work

roof repair

cutting and stacking wood

cleaning

some household repairs

washing cars

re-potting plants

shampooing carpets

de-cluttering house or garage

holiday preparation, etc.

   Other services are sometimes provided like shopping, laundry, cooking, playing cards or board games, sharing conversation, etc.

   Thanks to the generous $100,000 grant from the Donald B. and Dorothy L. Stabler Foundation to the Central Pennsylvania Chapter, the Chapter can expand this program in 2010-2011.

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 
musings: patrick ponders

wheelchair accessible corn maze

   On a 75°F (23.9°C) Sunday afternoon in October one voice in my head screams ‘corn maze’, while the caregiver voice wonders is there even such a thing as a wheelchair accessible corn maze?

   Googling and phone calls led me to Hayman Farms, seven miles northeast of Carlisle, PA. 

   Hayman Farms is a privately owned working farm venturing into agritourism.  Calling them I hear them say their maze is accessible but hearing their neighbor uses a wheelchair and is one of the first through the maze is all the proof I need. … The heart is always the best blueprint.

  Now add Multiple Sclerosis symptoms of short term memory loss and visual impairment (legally blind) on top of the bafflement of a 2 acre corn maze, … well, I am quite sure that Patti and I have never laughed so hard in the middle of a field of corn.

   Afterwards, we (OK, maybe just me) had time to grunt and squeak and squawk with the animals, "of courserous! Can't you?" While Patti and her goat buddy tried to ignore me, the sheep was captivated by my singing.

   As the day was simply marvahlous dahling, we headed next to picnic in Willow Mill Park . You just do not find many parks that have pavilions with ramps and an entire row of tables custom cut for wheelchairs. 

   What better way to end the day, then settling in on the shore of the Conodoquinet Creek for some whale watching.   …

   Never did see one but that’s OK, when the day started I had never seen an accessible corn field either.

   Adventures in accessibility are somewhat like a recipe. You take a dash of daydream mix in planning and work and with a pinch of good luck, let the good times roll.

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 
musings: patrick ponders

thyroid and Multiple Sclerosis

   While the Internet empowers me to just click in to Gothenburg, Sweden and the meeting of European Committee for Treatment and Research in Multiple Sclerosis and learn “…that disorders such as thyroiditis, diabetes, rheumatoid arthritis, and asthma are associated with MS…” Patients With Multiple Sclerosis at Risk for Thyroid Disease, the hard wired part of me cannot help but remember and reflect on how all this began before the Internet.

   Preceding Patti’s diagnosis of “probable MS” in 1985 she went through a rough health streak. Frequent strep throat eventually was treated with a tonsillectomy. Next up was diagnosis of Grave’s disease, thyroid surgery and better life through chemistry, Synthroid. Then almost as if a diagnosis of last resort, ‘probable MS’, four years later that would change to “no question about it” MS.

   Would today’s extraordinary access to information have changed any decision making back then? I don’t think so. Hey! I’m bleeding here, a band-aid would be nice still seems the logical approach to symptoms.

   However even though it does not apply to our story the ‘what if’ of it all does not escape me. Now days there is so much more to consider.

   As early as 1999 “findings might have therapeutic implications because interferon treatment can induce … thyroiditis” Association of MS with thyroid disorders 

   Or, “Some treatments and medications can trigger Graves' disease and/or thyrotoxicosis in some people, including: Interferon Beta-1b (Betaferon, Betaseron, Extavia, Ziferon), Interleukin-4, immunosuppressant therapy, … a third of patients receiving Campath-1H therapy for multiple sclerosis develop Graves' disease within six months …” Risks and Symptoms of Graves' Disease and Hyperthyroidism / Risk Factors, Triggers, Causes, Signs and Symptoms 

   Twenty-five years ago while Patti marched confidently toward solutions from internist to endocrinologist to surgeon, the duality of MS and Grave’s disease was never mentioned (perhaps not known at the time) “…There is a significant co-occurrence in patients with MS and Graves' disease …” Co-occurrence of autoimmune thyroid disease in a multiple sclerosis cohort  

Patrick Leer

BLOGS:

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

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

Dollars for Docs

Is your doctor taking payments from drug companies for speaking and consulting?

“we are inviting every medical patient in the country to join this investigation. The database on our website includes every payment by seven drug companies that have publicly reported since 2009. We invite readers to type their doctor’s name into our search engine and find out whether he or she has received money from pharma.”  Stephen Engelberg, ProPublica

DOLLARS FOR DOCS

“The raw numbers on payments, which represent only a small fraction of the industry’s total outlay, are staggering enough: More than $257 million to some 17,700 doctors and other practitioners.”

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 
musings: patrick ponders

rollin' and howlin' in the streets

Halloween Я Us - its a family tradition for as long as I can remember.

Talk about mixed mythologies between my own earliest photographed Halloween costume as St. Patrick and our daughter’s first as an angel with two devils as parents.  

No doubt a psychoanalyst would have a field day with Halloween and me. For years I set up skeletons representing friends who had died and sat down for a beer with them at a patio table before Trick or Treat would begin.  The longer you live the more people you miss, now days it takes a parade!

With the temperature dropping just below 70°F (21°C) it was a magnificent evening for our small town Halloween parade and a bottle of Zombie Zinfandel with ‘friends’.

As the wheelchair pusher a special treat about parades is use of the streets closed to vehicles. Love that no sidewalk and no curb cut freedom.

Parades also seemingly fit Multiple Sclerosis symptoms like a glove. Short term memory loss and attention span are non factors. Life sized to larger than life unquestionably helps with visual impairment, and for a brief moment in this parallel universe sitting in a wheelchair trumps sitting on a curb.  

Dancing ghouls, cheerleaders, politicians, marching bands, fire trucks, floats, and costumes could only be made better by parade marchers giving out candy! So much candy that Patti actually said “no mas”.

For reasons I have never figured out Patti while wanting to attend will sometimes upon arrival transform temporarily into a total grump. As if on cue down the street toward the grump zone came an exuberant bouncing pack of cheerleaders and aspiring mini-cheerleaders. As if guided by some mystical unhappiness antenna they stopped pivoted and performed a happy cheer. Turning to caution Patti not to be rude I found a laughing clapping Patti. Never underestimate cheerleaders as healers.

Politicians I found a fascinating addition to this year’s parade and created the opportunity for some spontaneous chat about upcoming election choices. I do have to credit Patti for raising the quintessential political tiebreaker, “which one is giving out candy?”

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 
musings: patrick ponders

stink bugs, to arms!

Spring and Fall afternoons and evenings are, or I should say were, our favorite time of year to enjoy our patio with optimum weather for living with Multiple Sclerosis.

Forget 'Invaders from Mars' or 'Invasion of the Body Snatchers' there is an invasion of real aliens - stink bugs! If you have never seen one, they are about 2/3 inch (17 mm) of ugly.  

They cling to our patio door and window screens by the dozens and dozens and dozens, just waiting for any opportunity to enter the house and hang out for the winter. Able to either walk or fly they are formidable when determined.

Cooking on the grill, eating on the patio, or just rolling Patti out to enjoy the weather is WAR. These scoundrels think nothing of hitch hiking on a person in a wheelchair. Ever tried swatting bugs off a legally blind cognitively impaired person with short term memory loss? Let me tell you it takes a lot of explaining over and over again.

Originally I just captured them one by one with a tissue and flushed down the toilette until their numbers became overwhelming. Now happiness is a warm vacuum.  I suck those critters to hell in a vacuum bag! Have even taken the offensive vacuuming the outside of the house, yeah baby!

OK! I admit that trash talking bugs and doing my best Vincent Price psycho laugh while sucking them up in a vacuum may be a little over the top, but hey it’s their fault – they started it. Patti was laughing so hard she could not even smoke her 'ciggie'.

Excuse me I just felt something crawling on my back. … I’m back. After removing my shirt why should I not be surprised – it was a stink bug. Sentenced to execution by flushing. 

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 
musings: patrick ponders

Disability Employment Awareness Month

Employment is challenging for everyone right now, though for some it is far MORE challenging than others. The unemployment rate for those with disabilities is almost twice as high as those with no disability.

National Disability Employment Awareness Month

“…Individuals with disabilities are a vital and dynamic part of our Nation, and their contributions have impacted countless lives. People with disabilities bring immeasurable value to our workplaces, and we will continue to address the challenges to employment that must be overcome. This month, let us rededicate ourselves to fostering equal access and fair opportunity in our labor force …” President Barack Obama 

Visit - US Department of Labor: Office of Disability Employment Policy  

or click What can YOU do?

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 
musings: patrick ponders

flu shot shout-out

Annual vaccination for the flu is a no-brainer for caregivers, family, and friends that care for or live with people at risk for influenza-related complications.

Additionally a caregiver down with the flu is not only a non-caregiver, but even the comfort of visiting or companionship becomes risk as you can infect others beginning 1 day before symptoms develop and up to 5-7 days after becoming sick. 

If you cannot care for someone then someone else has to and on it ripples.

More at Centers for Disease Control and Prevention (CDC) Seasonal Influenza (Flu) 


All 3 flu vaccinations in 1 shot this year! 


Plus there is this out of Great Britain ... Flu shot linked to REDUCED heart attack risk. 

Often the challenge is simply trying to find and get a flu shot between obstacles of time, locations, availability and more. After frustratingly trying a publicized Pennsylvania State flu shot locator I figured it was going to be another difficult year.

Monday, on a rainy cool evening outing, I dashed into Target (always bemusing Patti with the ‘Tar-zhay’ pronunciation) for a hot chocolate from their in-store Starbucks and was greeted by a Target Flu HQ campaign rivaling Halloween merchandising.  (and somehow not listed on PA flu shot locator)

Returning the next day I treated myself and our daughter to 2010 flu shots. Patti gets her flu shot through her care facility.

Advertised at $24 we discovered our AAA membership was worth a 33% discount, bringing the price to $16.

Outside of a form to fill out there was no appointment, no hassle and no wait. Pharmacist gives the shot, and one of the kinder and gentler shots I have ever had.

Additionally for each shot we got a booklet of $40 in ‘cold and flu’ season coupons, over half of which are products I actually buy, and for the pièce de résistance a tub of Dum Dums to pick from!

Wonder if I can choose Target for my health care plan under Obamacare?

Flu IQ

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 
musings: patrick ponders

life expectancy facebook of multiple sclerosis

While Big Medicine offers statistics, in the 21^st Century people can communicate a bond of feelings about a shared anxiety of living with Multiple Sclerosis, life expectancy. (from a Facebook comment stream)                 

"my neurologist team are adamant that, while life expectancy is, at the moment anyway, reduced marginally, it will not kill you"

 "at our recent rally in Canada, a list of people who died of MS was read.... You see, people die of MS all of the time, and the complications it causes to long-term health.....if they didn`t have MS …they`d still be alive." 

"are we taking into account the amount of people who have died from taking meds to treat their MS, like Tysabri and now this new drug Fingolimod" 

"suicide and euthanasia rates are exponentially higher in the MS community than in the general population" 

"I was told MS is incurable, it is not fatal" 

"MS can kill, it does happen and we know it does. And it doesn't matter what the play on words is the truth is the primary illness caused the secondary.....and therefore death." 

"you dont die of MS but of complications. Think of it like HIV...no one dies of AIDS but complications from it." 

"I've lost 6 friends to MS already, some under 50, they died because they could no longer breathe or eat, so I think the neuros saying you die from 'complications from MS'... is a point that has always irritated me with neuros." 

"my first neuro said I had Marburg MS. That is a death sentence. … Thank God that neuro was wrong in my case" 

"this is what the MS Society says about life expectancy:"  

Life expectancy is the most understandable question with any incurable diagnosis, neither statistics nor smiley faces will chase the albatross away.

Living with Multiple Sclerosis is the original “it’s complicated” status. Perhaps the touch of family and friends can help tip expectancy from apprehension to hope. Answers are in hearts whether broken, brave, or caring.

Caregivingly Yours, Patrick Leer 
web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders

music for caregivers

There can be so much noise in the head of a caregiver / carer that it can be almost impossible to focus. Your hands may be pushing a wheelchair, changing Depends, or assisting with a transfer but your brain is everywhere, endlessly reprioritizing your ‘to do’ list that never will be accomplished.

Recently I have been reading about music therapy in caregiving. Needless to say these articles are focused on patients. Helping to revive dormant memories, retain new information, palliative care, even how caregiver singing may improve communication between patient and caregiver. Broadway are you listening? A musical in a nursing home setting is just waiting to be written for the graying of America.

What about music for caregivers / carers? Some Google hits offer music as a stress reliever. Somehow, I just do not picture myself laying in a hot tub with scented candles listening to Vivaldi.

I do use music to motivate myself though more in my head not in earbuds attached to an MP3 player. If I’m dragging or my back is sore and debating maybe skipping an outing with Patti, I just call up parts of songs to get me back on track.

For example here is a minute of how my head works. 

There is head noise whether homecare or the care facility era, whether caring for spouses, or children, or parents, or relatives or friends simply because it all demands time you do not have, it is physical and it is emotional.

When I find myself in the right music the noise parts like Moses parting the Red Sea  … Yeah, yeah I know the simile is a stretch since I’m pushing a wheelchair and not riding a chariot but you get my drift.

What’s in YOUR head?

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders

hubris is a disease

"The fact is that we would have had comprehensive health care NOW, had it not been for Ted Kennedy's deliberately blocking the legislation that I proposed” former US President Jimmy Carter said. “It was his fault. Ted Kennedy killed the bill."

Slack jawed I’ve surfed the net over this squabble absolutely stunned that ‘pundits’ and news seem more concerned with political legacies than ‘getting’ the toll this bickering cost.

30+ years of people’s health, life and death have been impacted. Big Pharma and Big Medicine have infected the US economy perhaps irreparably. Rising medical bills have cost many families everything. U.S. residents without health insurance soared to a record high last year as employment-based coverage plummeted.

Championing health care reform in the 1970’s, Sen. Ted Kennedy trumpeted, “We are the only industrialized nation in the world outside South Africa that does not have universal, comprehensive healthcare insurance.”

Kennedy pulled out of a comprise bill with then President Gerald Ford. OK I can get why accept compromise when waiting a year or so and the Democrats might put together their own. 

Of course no one, not even his mother, envisioned Jimmy Carter winning the Democratic Party nomination.

However he did and went on to win the 1976 US presidential election. Now with control of both the White House and Congress health care reform became a squabble between Carter and Kennedy centered around implementation.

“He (Kennedy) did not want to see me have a major success in that realm of life,” Carter said.

Neither would blink and history swept the moment in time aside. Sen. Kennedy chose to challenge President Carter in the Democratic primaries of 1980. Beat Carter, beat Reagan, and then he could push through the legislation he wanted. … Sigh! Hubris is a disease.

Decades have passed, real people’s lives and health have been affected every day.

Time magazine in 1979 reported that health care reform could cost an estimated $130 billion. What are we talking these days in the trillions?

Whenever a man has cast a longing eye on offices, a rottenness begins in his conduct.  

~Thomas Jefferson

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders