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