wheelchair accessible: Great PA FlavorFest

Free admission! Free parking! Free tasting! Free entertainment! Wheelchair accessible! What is not to like? … only that the Great Pennsylvania FlavorFest only happens ‘once a year’ over Memorial Day Weekend.

Multiple Sclerosis symptoms are unavoidable companions in any outing.  Non-ambulatory is the big dog impacting everything from dressing and the rest of the activities of daily living to transportation. While Memorial Day weekend may kick off the summer season for many, sharing the enthusiasm for the weather is lost with MS sensitivity to both heat and seasons.  

Care giving is about making the adaptations or leveling that field. Not unlike the Indianapolis 500 or Coca-Cola 600 that dominates Memorial weekend sports, care giving is about the team behind the person in the chair. From the staff at Patti’s care facility that got her up, dressed, and ready – myself transporting and pushing her around the 35 acres – FlavorFest staff, vendors, and giant frog who patiently and pleasantly enabled Patti’s participation - team Patti kept Patti in the race to taste.

Obviously favoring her sweet tooth, Patti tasted her way through Red Raspberry, Blueberry, and Sour Cherry wines from West Hanover Winery; Peach Mist from Winery at Wilcox; Mountain Blush, Tailgate Red, Mountain Mist, and Mountain Sunset wines from Mount Nittany Vineyard until hitting the jackpot with their Rock Hill Red wine slush!

Wine slush was sooo good we bought a bottle of Rock Hill Red to make their slushy recipe at home. Bedecked in Penn State attire, Mount Nittany Vineyard staff also held the insight straight for Patti, an alumni. J

I would advise anyone dealing with mobility challenges that they do not rent wheelchairs or scooters, when it come to mobility assistance – it’s BYO.

Depending on your mobility device some parts of the Pennsylvania Renaissance Faire ground may or may not be the easiest to navigate. Manually pushed, it is all ‘no problemo’ for Patti and good exercise for me. 

As the cooler summer morning temperature gave way to MS unfriendly 81°F (27.2°C) with high humidity, a happy Patti wanted nothing more than a long air conditioned afternoon nap. 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

was it a tornado?

“In Cumberland County, police scanner reports around 6:50 p.m. stated that a tornado touched down” Severe thunderstorm hits Cumberland County

Just about that time, I was pulling up under the porte cochere of Patti’s care facility as all hell broke loose. Wind and rain blew so hard horizontally that cover meant nothing. Hail began to pound the rear window so hard I fully expected it to burst especially as hail grew to the size of jawbreakers. One extraordinary burst of wind briefly lifted the rear of our van and we watched pieces of the porte cochere blow off and disappear into the maelstrom of rain, hail, and wind in front of us. Power inside the facility failed and soon weighted outdoor furniture and trash cans were blowing by. With a loud crack the facility sign joined the casualties.  

How nothing hit our wheelchair van is beyond me but I am grateful. When wind slowed enough to open my door without it being ripped off I pried open the once automatic doors of the facility to see what was happening inside.

Not only was power out but back up generator had blown. Staff was executing tornado emergency procedures and getting everyone into wheelchairs and into halls away from windows until tornado warning was lifted.

Determining that we had power at home, I slalomed home on roads littered with trees, tree branches, puddles more suitable for boating than driving, and void of operable traffic signals. Emergency vehicles screamed in all directions.  

Around 11 PM the care facility called to inform me the tornado watch was lifted, emergency generator was working and full power was expected by 1 AM.

No guarantee our home power would stay on with more thunderstorms forecasted overnight, so we slalomed back.

Was it a tornado? I don’t think so. We lived through an F3 tornado in College Park, MD in 2001 that killed 2, injured 50, and left a 17 mile path of destruction. I’ll never forget the sound of a tornado, like trains racing from all directions.

All safe – that’s the only thing that really matters.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

World MS Day 2011: Work and MS

World MS Day - the last Wednesday of May each year - is an international day to raise awareness about people living with MS across the world.

The 2011 theme is ‘Work and MS’. How changes to a workplace can enable people with chronic fluctuating diseases like MS to stay in work. You can learn more at www.worldmsday.org.

People with disabilities and/or chronic diseases can be marginalized by society when their rights to access work are not recognized by employers or safeguarded by laws in their countries.

This is not about reinventing the wheel - it’s about removing obstacles to the wheel.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

summertime and memory is melting

“There ain’t no cure for the summertime blues” especially when living with Multiple Sclerosis. Research reports that memory and cognition melt in summer and not even air conditioning can help.

“cognitive scores were 70 percent lower among MS patients on warmer days — those with an average temperature of 66° F (18.9°C) — than on days when the mercury hit a mean of only 33°F (0.5°C)”

For MS Patients, Memory Melts in Warm Weather

Research was done by the Kessler Foundation in West Orange, NJ, “where reseach and program centers are linking science and grantsmanship leading to discoveries that are changing the lives of people with disabilities”.

While Jersey Shore tourism must be wondering how the Kessler Foundation missed the memo about ‘promoting’ summer, anecdotally our worst attempts over two decades to create MS family outings have involved hot weather.  Of course, in those earliest days the only research available to us was ‘trial and error’.

While MS changes everything, surviving is about adapting to change.

Walking, pushing, and rolling through the cool of a summer morning is not unlike enjoying an ice cream cone before it starts to melt.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

Are you ready?

Rapture! Armageddon! Trumpet out from between headlines of news and scandals du jour as life as we know it is predicted to change this Saturday, May 21.

Yet for caregiving, this is an opportune ‘teaching moment’ – when some one is dependent on you, are you ready to not be there?

It does not take prophesy, over half of car accidents occur within 5 miles of your home.

What would happen if you died or where unable to communicate? How long would it take before anyone even realized there was someone dependent on you?

How many people realize that even the simplest cell phone has an ICE contact (In Case of Emergency) and often associated pages for text and/or voice information. Your cell phone can speak for you even when you cannot.

Immortality by necessity is understandable when caring for someone, yet the reality is the opposite. Caregiving reduces life expectancy. Again, are you ready?

Wills, general and medical powers of attorney are they safely filed and easily accessible? More importantly is your successor already named in the documents? And does that person know where they are and have access to them, or a copy?

Most importantly are care plan and prescriptions written and recorded each and every time? When were they last given? Or are you again assuming you will always be there. Shouldn’t care be more about plans and less about assumptions?

Hey, I totally understand caregiving can be time paralyzing. Just getting through the day is reason to pat yourself on the back. Getting ‘transition’ together and keeping it together is more than a task.

Yet just imagine for a moment how unbelievably overwhelming it would be for anyone to have to step in when delusional immortality was your best plan.

Are you ready?

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

don't you dare stop and smell the lilacs

No, you will not find me advocating any “stop and smell” philosophy of life. With caregiving you choose the priorities for your time.

Four lilac bushes in the yard have always been simpatico. For a couple weeks each year I’m bear-hugged by the scent of lilacs as I step out onto my patio with that morning cup of coffee.

“With every leaf a miracle … and from this bush in the door-yard,

With delicate-colour’d blossoms, and heart-shaped leaves of rich green

A sprig, with its flower, I break.”

        Walt Whitman—When Lilacs Last in the Door-Yard Bloom’d.

I’m no Walt Whitman, snipping away with pruning shears soon indoors and outdoors are in harmony.

I’ve even impatiently transplanted two of them using my car to pull them out of the ground, transplanting lilac / vehicular gardening, and they still greet me.

According to Greek mythology, the story of lilac begins with a nymph named Syringa (lilac’s botanical name).  Pan, the god of the forests and fields, chased Syringa.  Freaked out by Pan’s unwanted affections, Syringa escaped him by turning herself into - yep, you guessed it – a lilac bush. … (Ancient botany class must have been a blast.)

Human imagination could not rest, Tchaikovsky’s ‘Sleeping Beauty’ ballet would immortalize the Lilac Fairy as a heroine and demi-goddess of wisdom.

Scientifically, lilacs are in the olive family and yummy to the larvae of some butterflies and moths.

For the fans of the trivial, George Washington and Thomas Jefferson both grew lilacs in their gardens. Lilac is the State flower of New Hampshire. Lilac wood is used for engraving, musical instruments, knife handles etc.

For the fans of symbolism, lilacs are said to stand for confidence and to symbolize pride or youthful innocence. In the Victorian language of flowers, lilacs symbolized wisdom and remembrance.

Even stuffy ol’ Harvard University is not unaffected by lilac time, allowing public picnicking one day a year in its arboretum - designated “Lilac Sunday”.

Don’t you dare stop and smell, seize the lilac not only with your senses but your imagination.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

short term memory Multiple Sclerosis

“Problems with short-term memory” is one of those phrases that people from professionals to friends & family nod at or make murmuring sounds of consensus that it’s “common with MS”. Yet does anyone have a clue as to what exactly is short term memory, much less problems? Psychoscientists and psychobabbleists fill books on the conscious mind, short-term vs long-term memory, and primary vs active memory. Brits even offer a category of “dottiness” (amiably eccentric).

Long story made short, lesions in multiple areas of the brain, atrophy of damaged brain tissue, and short circuiting of nerves within the brain transmitting memories all can contribute to and confound memory problems associated with Multiple Sclerosis.

Recently I had the pleasure of sitting in on a memory therapy session at Patti’s care facility. Even when the session began with the set back of Patti being unable to remember the therapist’s name, they stayed with the friendly routine of memory exercises, often interrupted with laughter. Conceding the obstacles of MS and memory, the therapist remarked that while Patti is not her most successful patient she is her most enjoyable.

There is no cookie cutter MS patient and recommended encouragement in mentally stimulating activities like crossword puzzles, word games, and regular exercise are obviously thwarted by Patti’s other MS related challenges of visual impairment (legally blind), non-ambulatory and dependency on others. As are most low tech and high tech tips and tricks for helping short term memory.

Observing therapy it reinforced my years of intuitive involvement of Patti in outings of the minutiae of life, from errands to family to fun. I always believed that even though dependent it should not preclude her from remaining engaged. Though I concede this is caregiver time demanding.

Not unlike physical exercise the brain needs a work out routine. Memory in MS is so much more than forgetting why you walked into a room. It ripples into self-mage, concentration, reasoning, word finding, conversation, and safety.

When it comes to memory, maybe it’s less about Freud and more about RuPaul:

“You better work it, girl ... Work, Sashay! Shante!” 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

wheelchair friendly Open Stage of Harrisburg

While applause is traditionally reserved for performers, here I must applaud a theatre itself! Living with Multiple Sclerosis as a family will do that to you because accessibility is more than a concept.

The Angino Family Theatre / Open Stage of Harrisburg “had me at hello”, as a caregiver, when wheelchair seating easily displayed on their on-line ticketing screen. Upon arriving, when they removed the seat so Patti’s chair could just roll into the spot eliminating transfers they earned my highest label, “wheelchair welcoming”.

We chose to celebrate Mother’s Day by attending “August: Osage County”. What could be better than spending Mother’s Day with a “matriarch who careens back and forth between incoherency and sharp-tongued, foul-mouthed lucidity?” Theater review August Osage County

MS symptoms of dysarthia and Pseudobulbar affect which can cause Patti to abruptly and unintentionally interact with movie theatre dialogue had never been tested in live theatre. through MS 'symptom D' glasses

Plus Patti has evolved through MS changes into somewhat a practitioner of “foul mouthed lucidity” herself. cursing and swearing and Multiple Sclerosis, oh my!

Front row wheelchair seating was in such proximity visual impairment was erased, actors often performed within an arms reach, and referring to cigarettes as ‘ciggies’ (Patti’s favorite phrase) in the dialogue may as well have been an invitation.  

Shhhing Patti never works, best to just try and ‘reboot’ her with a touch redirecting her attention momentarily. I cannot even remember how many touch prompts it took to nip Patti’s inter-acting debut in the bud.

The play rocked, like riding a rollercoaster of dramatic and hilarious ups, downs, corkscrews, and loops. Minus the physical barriers it was all the more thrilling. Minus Patti’s cognitive barriers it was a whole new dimension. By the third act there I was with my hand poised above Patti’s arm and our daughter behind Patti with her hands poised above Patti’s shoulders, as if we were all reveling in the play while trying to keep her from periodically jumping into the play. J

No, it was not a Hallmark Mother’s Day moment, it was better.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

fracture risk a Multiple Sclerosis trump card

Headlines are always one of those random variables of living with Multiple Sclerosis, “Thyroid Drug Linked to Fracture Risk”

While MS unquestionably dominates living with MS it is never the whole story. Patti has been taking the thyroid drug of recent headlines for over 25 years. Pre-MS, Patti was diagnosed with Grave’s Disease and her thyroid removed.

Unable to direct her own medical care actually this is one of those times where 24/7 facility care supports and protects her better than anything or anyone else.

The gist of the study is that synthroid (levothyroxine) levels were found to be a factor in bone weakening.  While the specific study involved patients older than 70 taking the drug for 5 years, it is not a stretch of the imagination to think about this for a younger but non-ambulatory woman with severely disabling MS taking it for over two decades.

It’s all about dosing levels, monitoring and adjusting as the body changes. In our homecare era, Patti’s testing and adjustments were made annually with her physical. Now in the care facility era her synthroid levels are monitored monthly and adjusted as necessary.

Being the kind of caregiver that continues to stick my nose in everything, I am always intrigued by the seemingly minute changes and adjustments. Especially since they obviously were happening in the home care era but only dealt with annually.

Memory problems, fatigue, constipation, having trouble thinking clearly, and weakness are symptoms of which of the following?

     a)              Hypothyroidism

     b)             Multiple Sclerosis

                     c)              Both of the above

When the answer is “c” it certainly makes you wonder.

Especially since Graves Disease which predates MS is, in simple speak, about the immune system attacking the thyroid gland which in turn overproduces creating hyperthyroidism.

‘The immune system attacking …’ - now where have I heard that before? Oh yes! When the attack is on the myelin sheath protecting the central nervous system, it’s called Multiple Sclerosis?

Looking back I swear it gets more confusing. Better to focus on now, tomorrow and most of all – safer! ‘Fracture risk’ is a trump card.

Related entry:

thyroid and Multiple Sclerosis

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer