Sunday, May 24, 2009

cluster headache: brain writhing on a corkscrew

IT lurks in the peace of sleep. No, that is not quite right it IS sleep itself, intertwined and indistinguishable.
90 minutes after closing my eyes, it (a Cluster Headache) jabs that corkscrew from hell above my right eye and torturously twists it in and then out. Malevolently crafted, headaches can last from 15 minutes to 2 hours.
"To sleep, perchance to dream- ay, there's the rub."
I admit I fear and resist sleep even while sleep becomes more tempting with sleep deprivation.

My first episode coincided with my first year of juggling Multiple Sclerosis spouse caregiving and raising our daughter. Cause and effect? Coincidence?

Over the past two decades, Cluster Headache episodes occur on average about every 18 months and last from 8 – 12 weeks.

Sleep deprivation eventually dominates any episode. Piles of things around me tell the tale of lost focus. Caregiving is a juggling act, yet one by one the juggled balls fall. My head snaps at the sound of rumble strips as my tires drift across lanes scaring me into adrenalin fueled alertness.

Disabling? Yes, during an actual Cluster Headache. Inconsistent abilities try to move forward through the deepening mud in between. However it WILL end! Or at least, it always has.

Nothing ends without learning. Empathy for pain in others and a window to better understanding life altered by disabling symptoms are lessons learned from a brain writhing on a corkscrew.

Previous related entries:

by Patrick Leer
Caregivingly Yours, MS Caregiver @

Saturday, May 16, 2009

Will the REAL Multiple Sclerosis stand up

I find myself reading journals written by people with Multiple Sclerosis and I ask myself how can this be?

Patti’s MS symptoms of visual impairment and inability to control hands and fingers prevent her from using a keyboard or mouse.

Perhaps voice activated systems, I ask myself? NO, Patti’s MS vocal impairments including slurred speech and inability to modulate plus cognitive impairments have whacked out any and all voice systems we’ve tried.

How can this be?

“And you may ask yourself
How do I work this?
And you may ask yourself
Where is that large automobile?
And you may tell yourself
This is not my beautiful house!
And you may tell yourself
This is not my beautiful wife!”

I read in these blogs written by people with MS about vacations, travel, cruises. How can this be? This is not our MS story.

I ask myself where Patti’s MS non-ambulatory symptoms are. What about the logistics of wheelchair accessible vans meeting them at airports?

I ask myself where Patti’s MS symptoms of total incontinence of both bladder and bowels are which determine range and logistics of travel? Patti’s MS cognitive symptoms prevent use of catheters, Patti amazingly survived pulling out a Foley catheter without rupturing herself.

What are these author’s secrets to living with MS?

"And you may ask yourself
Where does that highway go?
And you may ask yourself
Am I right? I wrong?
And you may tell yourself
My god!...what have I done?"

I read of people with MS and their work places. How can this be?

Patti’s MS symptoms at the time (slurred speech, numbness in fingers, cognitive and visual impairment) crashed and burned her prior career as a buyer for International Paper within a year of her first hospitalized exacerbation and prevented her from driving for everyone’s safety.

Are these authors driving with MS? How can this be?

Letting the days go by
Into the blue again/after the moneys gone
Once in a lifetime/water flowing underground.

Will the real Multiple Sclerosis stand up?

Same as it ever was...same as it ever
was...same as it ever was...
Then again maybe Kermit the Frog best asks the question how can this be?

Caregivingly Yours, Patrick Leer
web site:
musings: Patrick Ponders ...

Friday, May 15, 2009

Multiple Sclerosis & childhood alchemy

Different points of view tell the story of living with Multiple Sclerosis ‘as a family’.

MS and Mother’s Day for Patti’s Mom holds memories ranging from a toddler daughter taking her first steps to that of an adult daughter who can no longer walk; a mind numbing time line that only a Mother’s heart can know.

Patti celebrated only one able-bodied Mother’s Day before Multiple Sclerosis robbed her. The intensity of onset and progression has left her a spectator or absent for so many traditional ‘firsts’ as our daughter grew up.

Our daughter Megan was 18 months old when Multiple Sclerosis changed our lives. Progressing MS symptoms have highlighted yearly the difference in her mother daughter relationship from anyone she has ever known.

15 years ago, confronted with the task of making a home made Mother’s day card, our then 6 yr old daughter used her different point of view to hit one out of the park.
While Patti and I always worried about the impact of MS on raising a child, here was Megan addressing both her Mom’s visual impairment through video which could be viewed on a larger TV screen and her Mom missing her (Patti was having a particularly bad spell and staying with her folks). Childhood alchemy changing anxiety into hope.

Never underestimate different points of view.

Caregivingly Yours, Patrick Leer
web site:
musings: Patrick Ponders ...

Thursday, May 14, 2009

knee contractures Multiple Sclerosis

Knee contractures are more than a Multiple Sclerosis symptom; they affect Patti’s opportunity to participate in life.

In the wheelchair era of Multiple Sclerosis changes occur in the surrounding muscle, tendons and ligaments of the knees which make the legs stiffer to bend and straighten. Knee contractures impair transferring because legs essentially tuck up under a person rather than extending.

From a caregiver’s perspective the safer and easier transfer of Patti from her wheelchair to bed, scooter, non-accessible seating, or whatever by simply helping her to stand and pivot equals outings and involvement.

When dead lifting her is necessitated because of knee contractures not only are both of us are at risk but her world shrinks.

Patti can be a genuine b*tch (“and proud of it” in her own words) about physical therapy.

A saint of a new therapist persists with Patti and changed the modalities of therapy:

  1. Ultrasound is used to deep heat muscles and tendons.
  2. Legs are manually manipulated and stretched.
  3. SoftPro Static Gel Knee Orthosis are applied and supported with an ottoman like cushion while Patti is still in her wheel chair.
  4. A nap wearing the soft pro braces closes out the routine.

In my opinion the results have been phenomenal, seemingly setting the clock back several years when it comes to transferring.

While PT cannot last forever, the nap with ortho braces is to be written into the nursing plan. ANY nap that is written into a care plan is a plus with Multiple Sclerosis care.

Additionally occupational therapy will next evaluate Patti for modifications to her wheelchair and/or a new wheelchair to focus on improving leg extension and posture.

A plus to the care facility era is that medical care surrounds you from aides for attended activities of daily living to nursing staff to doctors visiting you to ‘down the hall’ therapy.

Please always remember that the pluses are in large part driven by YOU. You must insure that a specific Multiple Sclerosis oriented care plan is in effect. Most important of all YOU, FAMILY, AND FRIENDS must remain involved and supporting.

previous related entries:
10/21/08 Multiple Sclerosis knee contractures
08/12/08 memory loss and knee contracture

Caregivingly Yours, Patrick Leer
web site:
Patrick Ponders ...

Sunday, May 10, 2009

a Mother's Day reflection

While I do not remember the scalpel slicing through the womb and being dragged into the world that is where my Mother’s Day begins.

Just because I had the good manners to sit upright and face forward I had already been zapped a couple times with x-rays and labeled a complete breech.

My Mother was a daughter of old world immigrants, her Mom from Ireland, her Dad from Wales.

Traditional values seem confusing today. You became a quick learner in the right and wrong department after a couple whacks across your butt with a belt. You only whined “I’m bored” once, because you were handed a list of chores. Threats of being left with the “Pineys” and eaten by the “New Jersey Devil” instantly stopped backseat squabbles between my brother and me on long car rides.

While traditional my Mom also inspired independence. She worked nights to balance parenting and her career as a psychiatric nurse.

Her career blended interesting insights into parenting. My Mom observed one of my earliest experiments in shaving and remarked that only child molesting, psycho killers shave that way. I still smile most mornings when remembering.

“Don’t cry, crying only lets them know they got to you.” To this day, I am not exactly sure who them and they are or what this means but I have stuck with this maternal advice.

Faith and religion were not optional activities. Being Irish Catholic was as necessary as food, shelter, and sleep. I ate so many fish sticks on Fridays I am traumatized by tartar sauce.

Through it all, love was unequivocal. That is the single most important lesson from my Mom. Well, that and the lilt of Irish laughter.

My Mom struggled her final years following a massive stroke. One January afternoon in 1997 I visited with her while my Dad had a doctor’s appointment.

That afternoon was surreal. My Mom was more lucid than in a decade. She asked me to read some of her favorite Bible passages and we got to talking about everything and anything. Yapping away more like two old friends than mother and son.

I thank God for that last memory and time together, as I would never see nor talk with her again.

Years later, I found a book of poetry she had given me decades earlier for my 30th birthday (which I had never even opened). I failed miserably in the ‘don’t cry’ lesson as I opened the book and read in her handwriting:

“To Pat,
Walk easy on the Earth!!
Your Mother”
Caregivingly Yours, Patrick Leer

Saturday, May 02, 2009

cluster headaches aka suicide headaches

They’re baaack …

It has been a 22 month reprieve for me but as they have for 20 years an episode of Cluster Headaches again rules my daily life.

"Suicide headaches" was the earliest attempt to describe the severity of cluster headaches being able ‘to take normal men and force them to commit suicide’.

Women with cluster headaches describe the pain as worse than giving birth. Imagine giving birth above your eye without anesthetic 2 or 3 times a day, for eight weeks at a time.

Debilitating, disabling, and beyond any definition of pain they become your life for the duration of the episode.

Since my last episode I was surprised to discover the pioneering of videos related to Cluster Headaches on You Tube. This first video is a most creative attempt using the music video format to explain cluster headaches.
This second is REALITY and takes guts to watch. It takes even more guts to leave a camera on and capture what happens as the hell from a cluster headache destroys you.
I writhed as I watched knowing too many years of such attacks. To avoid waking anyone, I have learned to chew on towels and scream into pillows. IF God is in a merciful mood I black out at the peak of pain and awaken later on the floor. Sadly, rarely is God merciful.

Soon sleep deprivation is in a neck to neck race with pain. I live trying for brief cat naps.

Through two decades of episodes while spouse caregiving for Multiple Sclerosis and parenting a child through infant to adult, human empathy from others was inherent. Family sees pain and results in caring unspoken adjustments in their own needs and behaviors.

New to this episode is living with Autism in our home. From what I have observed of Autism there is no awareness of another, nor resulting empathy for anyone else.

The time ahead will certainly test Friedrich Nietzsche’s, “What does not destroy me, makes me stronger.”

Caregivingly Yours, Patrick Leer
web site:
musings: Patrick Ponders ...

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