‘tis the season for Multiple Sclerosis

What is it with Boston and the seasons of the year?

James Taylor, born in Boston, put them to rhyme

“Winter, spring , summer, or fall,

All you have to do is call”

Brigham and Women's Hospital in Boston recently studied the seasons in relation to Multiple Sclerosis.

Participants had MRIs weekly to monthly over the course of a year. The study found that disease activity varied with the seasons.

In the spring and summer months, people with multiple sclerosis are at a two to three times greater risk for disease activity. 

"Our results showed that the appearance of lesions on brain scans was two to three times higher in the months of March to August, compared to other months of the year." Dr Dominik Meier

Seasonal prevalence of MS disease activity 

Besides seasons they also factored in daily weather conditions and found that warmer temperatures and solar radiation were linked to disease activity, while precipitation was ‘no problemo’.

Now trying to share this ‘news’ with Patti on a 90°F (32.2°C) hot and humid summer evening got a big “duh” out of her about the study yet a more spirited conversation over James Taylor music. She enjoys and I, well … (One good thing about pushing a wheelchair is you can make faces while listening to someone talk.)

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

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

musings: patrick ponders 

disruptive behavior in health care

I know the values and bedside manners of classic TV doctors like Hawkeye Pierce, Cliff Huxtable, and Marcus Welby were fiction but I did not realize they were fantasy.

            

What do you do when real reality is weirder than reality TV? 

"… surgeon storming out of the operating room, leaving others to finish the job… 

… doctor refusing to wait for an anesthetic to be applied to a baby, and performing a circumcision that left the baby in terrible pain… 

… dropping instruments on the floor, ignoring an offer of replacements, and using the contaminated items on a patient…”

Pennsylvania agency reports 'disruptive behavior' in state health care 

Hey! Can’t we all just get along or at least play nice while I’m bleeding here?   

“…the doctor ignored a concern raised by a nurse … nurses often react to intimating doctors by avoiding communication with them”

Or my personal favorite and why you should always include duct tape in preparing for any doctor’s appointment …

“… when doctors and patients talk, the doctor interrupts after an average of 18 seconds"

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

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

musings: patrick ponders 

care facility era internet chatter

What in the world do blue baths or finding non-existent second floors have to do with the care facility era. Everything and you will find neither in admission brochures.

You will only find them on the blogosphere because they are the experiences of caregivers of the care facility sharing the importance of continuing involvement, advocacy and above all communication.

Barb blogging in Multiple Sclerosis Carer, The blue bath shares: 

"Don would complain bitterly that … he hated the "blue bath". 

 “I quizzed the staff … he doesn't have good enough balance any more to sit up in the shower chair … wasn't safe; he might fall.”

“… tracked down a high-backed reclining shower chair … on trial for the past week … nurse said they just wheeled him in and left him to it … he was refreshed and relaxed and very happy with it.

(if the nursing home will not purchase one) …then I will purchase Don's own. … You can't put a price on dignity." 

Sarahsue blogging in "A day in my life",  Today….right now……that is the time!  

"I am learning to help Jack wait.........and waiting is difficult

I am also learning to judge what is fact and what is supposed fact.

Sometimes I get a call from Jack about a problem and after I drive 10 miles to the facility, he was mistaken, and greatly embarrassed. Helping him through these painful times is just part of loving your spouse.

Most of all I am learning that showing LOVE is understood and communicated without any barriers in the mind. The brain can be a broken machine but the love cells still function."  

In the care facility era the caregiver is now part of a team. Whether Multiple Sclerosis or Parkinson ’s or any multitude of illnesses or disabilities a patient’s ability to communicate is affected. Successful teams are fueled by communication.

Recently a reader forwarded me an excellent link and well worth the read for an insight into the communication training of nursing staffs.

Nursing Fundamentals Communication Skills 

Needs and hearts are only part of the circle of caring.

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

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

musings: patrick ponders 

choosing to care

It begins subtlety, no better yet, invisibly. You begin to give care. You CHOOSE to care.

The person dealing with diagnosis or progression of chronic illness or disability did not CHOOSE to be so and is understandably ferocious in their independence.

Veteran long term caregivers look back on this as a beginning or a stage of caregiving. But to many this stage holds, it is what they do.

Find a way to extend a helping hand without trumpeting your effort. For example, if you don’t normally do the cooking “develop” an interest do not “offer to cook”.

Worlds change. Soon you are excusing yourself from social activities to be around the home, just in case. Of course, you never phrase it that way.

What you are doing is not really fooling anyone, it is all about how you approach it. In a sense, chivalry not chauvinism.

Progression is the proverbial elephant in the room for both of you. I pray the elephant just sits there. Unfortunately most likely it will grow. The care person needs to be thinking and exploring ‘what if’ and under no circumstances think out loud.

                                                            

No one wants to be dependent anymore than they want to be chronically ill or disabled. This can get like emotional bumper cars in this stage. You have to try to understand that your choices whether calculated or in the heat of the moment are no different in the 21^st century than Pythagoras philosophized in the 6^th Century B.C, “choices are the hinges of destiny”.

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

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

musings: patrick ponders 

Friends on the winds of cyberspace

Why care? Why share? Likely there are as many answers as there are caregivers. Teach us to care is ever evolving.

             

One person somewhere shares a care experience and someone else reads. That experience is used, modified, or inspires someone else in the blogosphere. Caring evolves.

Four summers ago while Patti tooled around the yard in her scooter I was inspired by an entry from A Day In My Life about caregiving in Oklahoma and of all things an irrigation tip from the prairie.

The willow planted that day was small enough to fit in a car for its ride from nursery to home. Today, well …

Now branching over 20’ (6.1 m) wide and 30’ (9.14 m) tall it did not cure Multiple Sclerosis nor dramatically improve caregiving. It does remind me daily that no matter how lonely any one day may be that I am not alone.

Choosing a willow originally was just a spontaneous feel good kind of choice. With time it’s grown in symbolism.

Long before Big Pharma was even Big Pharma, Bayer AG synthetically produced the willow’s salicylic acid and patented it as “Aspirin”? Long, long before that native Americans used it as a staple of their healing arts. Across the then flat world, Hippocrates wrote of its medicinal properties. No Internet nor had anyone traveled between Old and New Worlds. ‘Mother’ Willow somehow healed across people, places, and time.

As the wind blows through the willow branches, I am reminded that another caregiver lives with the challenges of the care facility era in Oklahoma and another in Australia.  A caregiver deals with homecare in Massachusetts and another in Amsterdam. Their stories and more are lived in reality and shared in blogs listed on the sidebar. Friends on the winds of cyberspace and like the resolve of the willow they may bend but never break.

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

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

musings: patrick ponders 

week in the life of a wheelchair accessible van

Facing a week without our wheelchair accessible van cast a shadow on our August calendar.

Our van needed to spend a week at the vehicle spa getting rejuvenated after the collision. Costs of repairs and a rental vehicle - responsibility of USAA insurance, their client had rear-ended us.

                                            

Finding a ‘comparable’ rental vehicle was frankly more of a challenge than a point of contention. On site Enterprise Rent-a-Car office was worthless. Kudos to McCafferty's Collision Center! Their staff not only grasped living with wheelchair accessibility but found the needle in the haystack.

                                                        

Ta-da! Accesible Rental Vans of Owings Mill, MD to the rescue, with pickup and delivery service to Maryland, Washington DC, Virginia, Pennsylvania and Delaware.

Rendezvousing with me at the collision center, the rental Dodge Caravan/Braun Entervan was configured ideally for our needs, an able bodied driver and wheelchair passenger. … Well almost – later discovering the air conditioning did not function at the highest setting was a problem for living with Multiple Sclerosis heat sensitive symptoms especially in August.

One phone call, no hassles ARC met me the next morning with another van. Inventory and commitment to customer satisfaction was exemplary. Keep in mind their base of operations is 80 miles away.

Second Dodge Caravan/Braun Entervan’s air conditioning worked perfectly! Intriguing to me, it was equipped with both regular and hand controls. I have never had the opportunity to ever see much less use accessibility driving controls. It has been a new window onto assistive technology.

… and gave us a good midsummer’s laugh over imagining Patti behind the wheel. Run for your lives, legally blind driver locked and loaded!

The more severe the progression of Multiple Sclerosis the more isolating it can be. Wheelchair accessible vehicles are more than empowering they represent freedom.

Freedom of mobility is too often not treated like a necessary activity of daily living. We have been blessed this week to have encountered so many good people working in businesses who actually ‘get it’ and have gone the extra mile to make it work.

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

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

musings: patrick ponders 

knee contractures / newly diagnosed MS

We were out and about the other night enjoying a summer evening, due in large part to the ongoing success of Patti’s daily therapy for Multiple Sclerosis knee contractures. 

                          

Easier and safer one person transfers equal more outings plus prolonging my back is in both our best interests. When Patti can extend her legs during a transfer everything just comes together.

For whatever reason care facility staff and Patti have been into a groove about putting on the softpro static gel knee orthosis when Patti settles down for her afternoon nap. Sounds so simple yet like anything involving team work you can assemble a team but that does not mean they will accomplish anything.

Certified nursing assistants (CNA) assist Patti into bed. The licensed practical nurse (LPN) needs to put on the knee orthosis as it is ‘prescribed’ therapy.  And of course Patti who can have rather strong feelings about the knee orthosis as a royal pain in the ass. … for whatever reason they are clicking.

We encountered a young woman we knew, out with her two young children. Greetings and salutations froze on the summer breeze as she shared that she had just been diagnosed with Multiple Sclerosis.

Time just stopped.

“Couldn’t it be something else?” “Couldn’t they be wrong?”

We listened. We cared. We shared our time and ourselves.

Likely we were a better audience than most since we had no questions about ‘what is’ MS.

With Patti’s own MS diagnosis in long term memory, she participated in the conversation, even helping with the refreshing sound of laughter as they shared a laugh over “neurologists suck!” and the absence of social skills in rocking someone’s world with a diagnosis of MS then reminding them to make sure to stop at the receptionist to make your next appointment.  

As a MS caregiver for 20+ years my focus evolves with Patti’s MS progression. Yet for 200 people a week in the US the journey is just beginning.

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

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

musings: patrick ponders 

thunder gods

With NASCAR paused in the North between Pocono and Watkins Glen, three of its top drivers Tony Stewart, Kyle Busch, and Kasey Kahne took a break from the tracks of thunder to race sprint cars on a legendary local dirt track to raise money for a good cause.

"Any time Kasey has an event that we can make, we obviously want to make it," Stewart said. "When our schedule opened up, it was a no-brainer to come here."

The Kasey Kahne Foundation raises money to give back to chronically ill children and their families.  All of the proceeds from Thursday's “Battle at the Grove” went to the charity.

An outing to Williams Grove Speedway is something Patti has absolutely no interest in, especially since we can hear it on our patio 5 miles away. For whatever reasons as her visual impairment has worsened with Multiple Sclerosis her hearing has improved. A couple hours of trackside mega-decibels has absolutely no appeal.

Now I have attended a couple times and while loud is an understatement and the proximity to drivers, cars, track and racing is captivating it’s the dust that fascinates me. Walking through the parking lot after dirt track racing is like walking through a mutant winter wonderland. Car windshields need to be cleaned of dirt. Even your hair and clothing is coated with a layer of dirt.

Is noise and dirt an acquired taste or just clutching onto eternal childhood? After all wasn’t the dirtier you were an indication of how good a time you had.

Though if talking about feeling good … how great does Aaron Ott, who graduated high school only two months ago, feel after getting down in the dirt with three thunder gods and winning the “Battle of the Grove”?

Charitable fundraising not only demands creativity but becomes all the more important in rougher economic times. Kudos to NASCAR driver Kasey Kahne, Ollie's Bargain Outlet, and Williams Grove Speedway.

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

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

musings: patrick ponders 

cognition, memory, and sociopath clown? oh my!

Caregiver as interpreter becomes part of the duties as memory loss and cognitive impairment symptoms join daily life. While Multiple Sclerosis specific in our story such symptoms are not unique to MS caregiving.

Personally I find myself angsting more over this than all the physical aspects of caregiving.

When you start thinking for someone, it is too easy to slide into expediting, then manipulating, and soon you can easily be spiraling downward toward politician if you do not force yourself into a system of checks and balances. 

Am I guilty of assuming my perspective is right at the risk of becoming a caregiver version of ‘Captain’ from the movie Cool Hand Luke, “What we’ve got here is - failure to communicate”.

Or am I looking too far beyond what is immediately in front of me and too deeply into communication theory such as “One Cannot Not Communicate” (every behavior is a kind of communication).

What I do know is that simple becomes complicated and complicated becomes simple. Is bending everything else to accommodate what you think will work best really ethical much less viable? … Life is dynamic only change is constant.

When angsting even compliments can be unsettling. “You always get her to smile.” “She’s always laughing when she’s with you.” … Hey! If you want smiles any garden variety sociopath can teach that class. If you want laughs call in the clowns. … OMG! I am becoming a sociopath clown?

Fortunately there is always Patti the only check and balance that really matters. While trying to share some of my angst she remarks, “Can’t I just have a fu#@ing cigarette?”

Caring is immediate never abstract. The noise in my head can wait.

Turning to her with an exaggerated smile and a quip about me being diagnosed with diarrhea of the mouth I have to wait until Patti stops laughing before handing her a cigarette. - OMG!

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

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

musings: patrick ponders

teen autism: soon it will be again

Sharing a home with teen autism and repeatedly hearing phrases such as “soon it will be again” never ceased to intrigue me. Communication challenged or insight?

Early in July, J & T returned to Massachusetts after almost two years here in Pennsylvania. … Soon it will be again?

Immediate needs of individual caregiving swallowed the idealism of two long term caregivers as mainstays for each other.

Living with teen autism is above all about autism, 24 hours a day, 7 days a week.

States herald programs and services. Reality is a picture painted by funding or lack thereof. Services and programs are as necessary as air to breathing.

One summer in Pennsylvania rippled for months through both their lives. With only half a day, three days a week of summer school special education contrasted with full day, 5 days a week in Massachusetts routine cracked. For Tyler that meant anxiety surged. For Jennifer as a single parent school hours are the ‘the work day’; a loss of the majority of income for even a couple months impacts everything.

More significant is what may or may not be available when Tyler turns 21, only 3 years away.

Less now is not likely to become more later. As a parent you do whatever it takes for your child.

Back when Tyler was diagnosed with autism the prevalence was 1 per 384 children. NIH recently used the prevalence of one in every 91 children.

We are only seeing the tip of the iceberg of autism thrusting up into adult age and the quest for adult services.

As dependent adults what will they do, where will they go?  Can you even imagine how poignant those questions are for a parent?

These are extraordinary parents who have nurtured their younger child time after time beyond what they were told their child would never do.

Parenting a teen as most know it is about nurturing independence. 

Parenting teen autism is about preparing to grow old with autism.

“Soon it will be again.” 

Caregivingly Yours, Patrick Leer 

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