Do I look like a FAQ?

Ever watch the ‘dance of the questions’ that flitter around anyone with visible chronic illness or disability? For two decades as a Multiple Sclerosis spouse caregiver I have held a front row seat. 

Any caregiver often assumes the role of medical information officer or family spokesperson.

Maybe it is about taking the heat off the person you care for. How many times can Patti answer the same questions? 

Maybe it is about a phenomena that ‘inquiring minds’ when confronted with a person in a wheelchair and a standing caregiver for some reason seem to often direct their question to the standing person. 

For whatever reason you do field the questions asked and unasked.

While a flawed logic, none the less there is logic to an individual as archetype. I know X, and X has MS, therefore I know MS.

For whatever reason inquiring minds seem drawn to that which they can see touch and feel over the abstract.

Through two decades of observing I have come to my own theory that sometimes it is simply about being remarkable.

Exhaustion and frustration may cloud any self perception that living with X is also about being remarkable.

However able bodied able minded people struggling through a mundane day may see one overcoming the challenges of living with X as extraordinary.

When you are ‘simply remarkable dahling’ … the questions follow you like paparazzi. 

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

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

God’ll get you for that

Is nothing sacred or has criminal enterprise moved into the assistive technology market? 

I have said before there is gold in mining the previously owned durable medical equipment market, key word “owned”. 

Participating in, dealing in, or buying stolen mobility assistance technology is illegal, and unconscionable. … “God’ll get you for that!”, Beatrice Arthur as Maude. 

Looks like God is going to be busy based on recent news stories from USA and UK:

An 86-year-old man ... got off his blue four-wheeled handicap scooter …  when the man returned, the scooter had been stolen. Handicap scooter stolen from man, 86, at Carlisle Fairgrounds 

Thieves stole the mobility scooter of a D-Day veteran on his diamond wedding anniversary. Garndiffaith D-Day veteran’s mobility scooter stolen

A stolen scooter belonging to a 64-year-old man with multiple sclerosis was found Wednesday morning, police Stolen Mobility Scooter Found By Police

"This is a heartless and despicable theft and has left the victim without the scooter which he relies on to go about his daily business." Mobility scooter stolen, Hebburn 

Callous thieves have left a frail pensioner housebound after stealing her mobility scooter and wrecking it. Mobility scooter theft leaves Mary housebound 

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

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

common sense vs etiquette

While grocery shopping I found myself in a frozen food aisle with other shoppers including a man in a wheelchair. I overheard the guy in the wheelchair rebuff at least two offers of help, with “I did not ask for help”.

As our shopping brought us adjacent, I observed him struggling to try and keep a door open with one arm, balance his basket on his lap with the other arm, and what … reach in with a third arm?

So I just reached over and held the door open. As his head pivoted in surprise, our eyes locked, and before he could say anything, I remarked, “I did not ask if you wanted help!” With a begrudging chuckle he reached in with his now freed arm retrieved his frozen foods and rolled away.

As an able bodied able minded person looking for rules of wheelchair or disability etiquette you may not even be looking in the same universe.

Each person facing loss of independence, or an adaptive life, or even just the probability of a dependent future is going to react differently.

Nor is transitioning to and from independence and dependence exclusive to disability or illness, try raising a teenager or young adult.

How many times entering or exiting a building have you simply held the door for someone behind you or someone struggling with their arms full? Did you ask them first if they needed help? I doubt it, likely you just did it because it made sense.

While I can urge you to try to see the person not the disability for all I know my fellow shopper could have started throwing frozen vegetables at me.

Sometimes you just have to risk common sense over any search for etiquette. 

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

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

the spy who … forgot

Pushing Patti by the staff break area in route to our van …

Patti: “Sometimes my hearing is too good. I can hear them talking about … (pause)”

Patrick: “Well super spy, talking about what?”

Patti: “I don’t know I forgot.”

What can you do but both start laughing.

Memory loss, impaired reasoning, and cognitive decline with Multiple Sclerosis, and I suspect any disease, spawns a range of emotions.

Loss of a self-directed life is just not something we teach. More likely we deny.

Of course then again Multiple Sclerosis is never predictable.  Laughing itself may trigger a perfect storm of MS symptoms from emotional lability, pseudobulbar affect, and scanning speech to dysphagia.

Driving along in the van we are listening to a CD by Flight of the Conchords. By the first refrain of their song “Mutha ‘Uckas” Patti is laughing so hard she starts crying then can’t even talk and then starts one of her I-know-I-am-not-choking-but-it-sure-feels-like-it episodes.

Ever try to calm or distract someone when dealing with hysterically infectious laughter? You both only end up laughing harder.

Living with Multiple Sclerosis and caregiving is serious business, there is no doubt about that. Too much time is mired in the details. The details, problems, and pressures can swallow you, or in other words … 

“Too many mutha uckas

Uckin' with my shi-

How many mutha uckas?

Too many to count”

 Maybe the best of possible things you can do is make the time to both start laughing.

Related entries

Speech & Voice Multiple Sclerosis

cursing and swearing and Multiple Sclerosis, oh my …

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/ 
videos: http://www.youtube.com/daddyleer

a teardrop on the face of MS

Though unique and diverse the face of MS always has room for both smiles and tears.

Living with Multiple Sclerosis will one day become ‘not-living’ with MS for everyone.

Steve and Bobrobert have shared their story of living with Multiple Sclerosis, caregiving and “living an amazing life” on their blog, The Wheel of Fortuna since July 2008.

While “actively dying” has entered their story, their love and courage shares on for all who will one day walk this path.

Remember life ... life gives us memories too beautiful to forget. 

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/ 
videos: http://www.youtube.com/daddyleer 

MS Walk Hershey, PA

Where better than the ‘sweetest place on earth’ to spend a Spring afternoon?

Joined by “Patti’s Pride” we pushed, rolled, and even walked as part of NMSS Central Pennsylvania Chapter MS Walk 2010 at Hershey, PA.

Pictured from left to right: (back row) Sharon Lanzino, Diana Martlew, Gloria Decker, Dave Decker, Harold Decker, Joan Hamilton, Janis Dean (front row) Patti Leer, Patrick Leer.

Hershey was a new MS Walk location for us as we are always in search of a ‘more accessible’ route. Kudos to the organizers and volunteers!

Most important the day is about having a good time with family, friends, and strangers all coming together for one brief moment in the year over living with Multiple Sclerosis. Hershey MS Walk besides being the ‘sweetest place on earth’ was also a fun and interesting route.

Patti enjoys a Hershey bar and a cigarette with the backdrop of the Hershey Mansion.

Rolling back through ZooAmerica as part of the route was a visual and mental treat.

We gained a most useful new product, “reusable cool neckwear”, modeled by Patti below. Only a week ago in my entry entitled fondue with Uhthoff's Phenomenon, MS heat intolerance dramatically affected our evening. This is a KEEPER!

One of the least talked about relationships in living with MS is parents. I cannot even imagine what it would be like to learn that your adult child that you successfully raised to be a healthy, happy, independent adult has been diagnosed with MS much less watch the decades of progressive decline of abilities back to dependence.

Patti and her parents share a laugh and proud moment over this poster. Zoom in and you will see Patti Leer and her Mom, Gloria Decker both listed among the honor roll. ... Special thanks Liz Follin, Martha Hoover, Lyndee Dean, Barry Lewis, and Bob Decker; you ARE part of this unique and poignant picture.   

Above all, thank God for Patti’s brother Dave, Doris, and our daughter Megan for sharing the wheelchair pushing.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/ 
videos: http://www.youtube.com/daddyleer  

wheelchair van: the throaty growl of freedom

Even Dodge in its latest TV commercial acknowledges "There are guys who will smirk at you for buying a Dodge Grand Caravan ..." 

Throw in a lowered floor for wheelchair accessibility and a disability parking placard hanging from the rear view mirror and you have zero intimidation factor when pulling up to a stop light and glancing over at bikers on Harleys or youngens in roadsters. 

That is until I rev our engine. For whatever reason the undercarriage modifications to accommodate the lowered floor in our Dodge Grand Caravan Sport minivan produce a throaty growl from the exhaust. With a recently replaced muffler and tail pipe that growl now roars, yeah baby!! 

It is bemusing to watch the heads on Harleys and youngens in thumping cars snap their heads to see what on earth is thundering next to them. "There are guys who will gape slack-jawed as you thunder up in your wheelchair accessible Dodge Grand Caravan ..." :) 

More than a vehicle this is freedom on wheels for Patti. With Multiple Sclerosis progression Patti is unable to transfer herself to and from a wheelchair and a vehicle. Patti's level of disability makes assisted transferring to and from vehicles a risk to both her and anyone assisting her. Without our wheelchair accessible van Patti's life would be more isolated and different than frankly can be imagined.

All the more ... shouldn't freedom have a throaty growl?

Like so many aspects of living with MS, it took team work, NMSS Central Pennsylvania Chapter pointed us in the direction of Pennsylvania Assistive Technology Foundation (PATF) which brokered through Sovereign Bank a low interest 6 yr loan. MS Society Central Pennsylvania Chapter also was able to help us with an assistance grant that basically covered 15% of that first year's monthly payments. We have been fortunate enough to receive additional assistance grants to help make Patti's freedom of mobility a bit more affordable in 2 of the past 3 years. ... and you wondered what charitable fundraising does?

This Sunday our wheelchair van will be growling its way over to Hershey, PA for the MS Walk. Thanks to the generosity of on-line donations and old fashioned checks to be turned in, Patti's Pride team has surpassed  its goal and will be be taking a victory roll /lap. And for a few brief hours on one day of the year living with MS will not be the exception.

Caregivingly Yours, Patrick Leer

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

fondue with Uhthoff's Phenomenon / Multiple Sclerosis

“April is the cruelest month.”  A week of freakishly warm temperatures, 90°F (32.2°C), has turned Spring helter skelter. 

Pollen drifting like desert sand may be hyperbole, but mowing my lawn twice before April 6^th is not! Even our cat stuck her tongue out at me! 

Now let us add Multiple Sclerosis to a Spring afternoon in our backyard … 

Chilled fruit fondue is a light, fun, and easy to eat meal for Patti. Bite size pieces of fresh cantaloupe, honeydew, and watermelon can be pre-set with toothpicks for dipping into peach yogurt (her favorite).  

Patti can ‘feed herself’ and I have found this dysphagia friendly in that for whatever reason the combination of fruit plus yogurt tends to encourage Patti to chew and taste her food before swallowing. Any meal with less prompting is a good meal. 

Add some cheese and crackers and you feel downright special. 

Enjoying being on our back patio doing our best impression of trendy I noticed Patti starting to slow and become disoriented, fruit was suddenly missing both the yogurt dip and her mouth. 

As I expressed concern, Patti growled back “I’m all f#cked up!” 

Uhthoff's phenomenon is in the house! A pseudoexacerbation associated with heat and Multiple Sclerosis, Patti’s eloquent, succinct description is right on the mark. 

For inquiring minds that need more detail - from MS Society of Canada:

Managing MS Symptoms: Uhthoff's Phenomena (Heat Intolerance) 

“Demyelinated fibers in the central nervous system can be very sensitive to even small elevations of core body temperature …Because these symptoms disappear with rest and cooling, they can be confusing … Heat induced weakness presents safety concerns for people with MS … they may find themselves too weak to extricate themselves …” 

Fortunately moving both Patti and our meal inside and cranking up the central air conditioning Patti rapidly stabilized as room temps dropped and we returned to enjoying dinner.

Multiple Sclerosis never misses a chance to pounce. 

Though long ago I never advanced beyond my Wolf Badge in Cub Scouts I have learned that when it comes to caregiving, (Winter, Spring, Summer, or Fall) “be prepared” is always good advice. 

Caregivingly Yours, Patrick Leer

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

Interview with the Caregiver, part 2

CY: You have been a caregiver for 20 years, is that normal?

Patrick: “How long will this take?” That inner child sitting in the back seat endlessly asking “are we there yet” never grows up. Inquiring minds do want to know.

Statistically the average time spent caregiving is 5 years. Yet statistics fail to capture the extraordinary range of caregiving situations. End of life care for a terminal illness is obviously shorter than care for a chronic disease or disability.

For what it’s worth only 15% of caregivers have been involved for 10 years, so at 20 years I guess you could say I’m “abnormal”.

CY: Have there been different stages or levels of caregiving over the years?

Patrick: Somewhere I wish there was written in stone “The X Stages of Caregiving”. Unfortunately, uniqueness makes this square peg round hole territory.

Caregiving ‘evolves’ of that there is no doubt. Obviously disease progression drives the pace. Caregiver metamorphosis defines the pace.

At genesis you are about SUPPORT. You basically help out.

With progression PERSONAL CARE becomes part of the equation, ‘hands on’ assistance with activities of daily living, dressing, feeding, personal hygiene, and toileting.

When personal and medical decisions can no longer be competently self-directed you enter ADVOCACY, almost becoming ‘one’ person.

CY: What do you mean by caregiver metamorphosis?

Your self identity transforms. In the beginning you identify yourself as “my wife has …”, or “my child has …” That is also how you see your role.

Later you begin to identify your self as a caregiver. You are not the person you were before just ‘adding on’ support for another to ‘your’ life. You accept your transformed self-identity.

As caregiving evolves fundamental changes occur in both of you.

CY: Ever consider walking away?

Patrick: Yes, the voices in my head argue about this all the time. Caregiving is a CHOICE; the person you are caring for has NO choice to be ill or disabled. You will always be both separated and joined by that reality.

to be continued …

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

Interview with the Caregiver, part 1

CY: In the mother of all interviews, Anne Rice’s vampire, Louis, remarks “I saw my last sunrise. I remember it completely … I watched its whole magnificence for the last time as if it were the first. And then I said farewell to sun light, and set out to become what I became.”

Do you remember the moment you ‘became’ a caregiver?

Patrick: Whoa! I did not see that segue coming.

Yet interestingly I do remember vividly the hours before ‘becoming’. That evening before bed was everything we wanted and dreamed. Playing with our healthy happy child, in 'our house', two jobs, two cars, “two cats in the yard, life used to be so hard.”

From the moment Patti awoke in the morning unable to walk and barely able to see or talk hours of chaos unfolded. If I became a caregiver it was only because I was the only was left standing and holding our 18 month daughter in my arms as Patti was hospitalized with her first MS exacerbation.

CY: Do you think becoming is like that for other caregivers?

Patrick: There is no cookie cutter caregiver. Some are adults suddenly caring for their parents, others are parents learning they will be caring for a special needs child for the rest of their lives, and others like us are one moment partners and the next moment one dependent on the other.

Age, abilities, education, resources, and more make it impossible to predict a reaction.

Fate has dealt your loved one the cruelest hand, and you are thrust into a life that will never be the same.

CY: Did anyone help guide you?

Patrick: No, in 1989 there were no brochures sitting on counters about caregiving at any medical office or MS organization.

Even if there were I am not sure it would have been helpful, differences often exceed similarities.

You react intuitively. There is simply too much too quick to absorb and accept. Don’t obsess over getting it right or wrong.

Focus on being there, and 'I care'. A simple hug may be the best possible first step.

to be continued …

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer