through MS 'symptom D' glasses

Not unlike 3D glasses at theatres sometimes it’s easier to ‘see’ living with Multiple Sclerosis when moments in time such as an outing to the movies are viewed through “symptom – D” glasses.

Getting ready is all about non-ambulatory which means transfers and assistance with dressing and changing Depends. Incontinence is best understood in terms of continence. How often do you visit the commode? Now just replace the word commode with - transfer from wheelchair to bed, change Depends, and transfer from bed to wheelchair.

Once ready to go, it’s onto wheelchair accessibility.

Considering all that’s involved with optic neuritis, I have my suspicions about 3D glasses, though this outing is 2D and visual impairment is more about proximity of accessible seating to the screen.

Whether jerky or simply lack of muscle coordination, spasms and/or spasticity means no bucket of popcorn goes on Patti’s lap. I hold the popcorn between us resting on her wheelchair rim.

Most dangerous of symptoms is dysphagia. Short circuiting of the muscles involved in swallowing can equal choking under the best of situations. Sitting in the companion seat at a theatre is the equivalent to the lifeguard chair at the beach.

Unlike garden variety fatigue, MS fatigue is more severe, a sudden lassitude.  In Patti’s case the odds increase as the day wears on, therefore matinees are preferred over evenings.

Sometimes you get a cocktail of symptoms. Dysarthria is all about the short circuiting of nerves controlling the muscles involved in speech. Pseudobulbar affect is all about inappropriate laughing/ crying.  In other words there is no way Patti is going to turn to me and ‘whisper’ something about the movie. More likely she may abruptly and unintentionally loudly interact with the movie dialogue.

Here again less attended matinees are helpful though I confess I’ve grown to enjoy Patti’s interactive MS dimension to the movie going experience.  

Ahhhh and alas there is always memory loss. Tucking Patti into bed at her care facility after our outing to see “Rango”, the nurse asks her where she went. “To dinner at my parent’s house!” J

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer

butterfly effect MS parenting

Almost 20 years ago, a fellow pre-school parent introduced herself and asked if I could help her understand living with Multiple Sclerosis as a family. She was a psychologist treating a 35 yr old patient and felt her patient’s childhood and teen years raised in a family decades earlier with a parent with MS could be a factor in her patient’s adult mental health challenges. There were no professional resources on this topic.

So it seemed providential while preparing this second part to the butterfly effect entry to read in the Washington Post,  A parent’s multiple sclerosis can take heavy toll on children 

“As a teacher, Levenson came across other children who had parents with MS and who reminded her of herself at that age. She said they were “battling feelings of isolation, embarrassment and anxiety, and the overwhelming sense that no one else understands.”

The butterfly effect of a Multiple Sclerosis diagnosis impacts more than caregiving, before all else - children.

“MS can be a very frightening thing for anyone to deal with in the family but especially for children …

… it can be physically demanding on a child if a parent is unable to walk properly and has to use a wheelchair ...

… If a parent can’t feed themselves very well the child maybe brought in to help … embarrassing and almost a role reversal really with the child becoming the parent and the parent becoming the child ...

... Cognitive problems in a parent can be very frightening. If a parent isn’t able to think properly or plan ahead … he or she can behave in a way which … does not appear to be in the best interest of the child ...

... There are many, many emotional stresses upon children. There are positive gains for children of MS and all the research shows that it isn’t necessarily a bad experience at all in the long term. Just as many, if not more, children are coming out of this experience having benefited from it in a strange way than there are actually who have been hurt by it in some way.” MS and Children (2008) from the Multiple Sclerosis International Foundation

related - butterfly effect MS caregiving 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer 

politics of Multiple Sclerosis

"The health and safety of Canadians is of the highest importance, and we need reliable, national information on Multiple Sclerosis to help those diagnosed with MS and their health-care providers" … "It is political because there have been public demands for action here and the government is responding." Ottawa announces MS monitoring system to track disease patterns, treatments 

South of the border here in the USA, “The prices of multiple sclerosis medicines have risen as much as 39 percent since last year … The prices may rise further ... analysts said in a Feb. 7 note to clients ... sees room for additional increases” U.S. Price Increases for MS Treatments 

Almost as if an illustration for a modern version of “The Emperor’s New Clothes” Democrats light a birthday candle, “This is a very special month for us because one year ago we passed the historic Affordable Health Care Act, which has made a difference in the lives of the American people.” House Minority Leader Nancy Pelosi (D-Calif.)

One difference is true, a year ago the caption would have read House ‘majority’ leader. In the real world where cost of MS medications have skyrocketed, elections in between have demonstrated the confusion and dispute that continues.  At least for ‘we the people’, Big Pharma has not missed a beat.

Locally a corner is accused of removing prescription medications from death scenes. While obviously innocent until proven guilty, the unaffordability of prescription medications in the US is a blank page just waiting to be written on.

“reliable, national information on Multiple Sclerosis” - Go Canada!

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer 

butterfly effect MS caregiving

Is there a butterfly effect between Multiple Sclerosis diagnosis and MS caregiving (and I suspect most caregiving situations)?

If so, then it is maddening.  You originally respond in your prime only to discover with long term care that while care needs increase your abilities and resources decline.  

I’m a big fan of visuals and simple, even at the risk of oversimplification. 

Obviously, progression of disability and care needs vary. Yet regardless of what your personal graph looks like - one side still goes up while the other side goes down.

Score and evaluate yourself with either the Zarit Caregiver Burden Interview or Caregiver Strain Index 

I’ve been at this for 21 years. Think about your answers not just for today but how did you feel 5 years ago, 10, 15, 20? Want to take a guess about next year or 5 years from now?

“Caregivers have been described as hidden patients … Financial strain, disease uncertainty, disrupted usual activities, and continuous caregiving … as many as half experience clinical depression … 61% of those providing at least 21 hours of care per week experiencing depression” Journal of Neuroscience Nursing 2008;40(1):Assessment of caregiver burden in families of persons with multiple sclerosis

“Impaired cognition is common in MS. Impaired memory and information processing speed may challenge both the caregivers' coping strategies and feelings, and may change the relationship from one of equal partners to one in which the caregiver is forced to adopt a parenting role” Caregiver Burden in Multiple Sclerosis 

Then there are always the ‘universals’ of caregiving -you will not get any younger. You are 2.5 times more likely to live in poverty than a non-caregiver (average lifetime loss of nearly $700,000 in reduced salary and retirement benefits). The toll on your health will shorten your life, up to 10 years less than a non-caregiver, and its quality.

It would be nice to insert some statistics or studies on the ‘tangible’ pluses here in the entry but there just aren’t any.

Caregiving is a choice, intangibles are always BYO.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer 

financial assistance program National MS Society

Our wheelchair accessible van = freedom for Patti and having just applied for and received an assistance grant from National MS Society a shout out of thanks is in order to our Central Pennsylvania Chapter.

 “The Financial Assistance Program was developed to bring meaningful financial assistance to as many people living with MS as possible, with emphasis on helping people maintain their independence, safety, health and quality of life.

 We may be able to help with the following types of requests: 

• Respite services such as short term home care

• Durable medical equipment and air conditioners

• Accessibility modifications to homes or automobiles such as ramps and hand controls

• Transportation to medical appointments

• Critical short term needs such as emergency help with utilities or rent

• Health and wellness support

 Since resources vary by community, eligible items and services available in a given area may differ."

For more information click on The National MS Society Financial Assistance Program

And of course the most special shout out of all to those who help to contribute and raise the funding to make living with Multiple Sclerosis just a little more affordable and life a little more enjoyable. 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer 

MS Walk and Roll - Gettysburg

There is fundraising and then there is FUNraising. For a couple hours, one Sunday a year it’s all about people living with Multiple Sclerosis.

Face-to-Face with other people living with MS and those who give a damn is even cooler than Facebook.

90 seconds of our last 5 years of National MS Society – Central Pennsylvania Chapter MS Walks kind of gives you the picture.

Of course, symptoms “R” MS and this year we are heading to the more wheelchair friendly Gettysburg MS Walk and Roll . 

It’s getting harder for Patti to sit upright in her wheelchair for any length of time and frankly less than fun to be jostled over cracked sidewalks, up and down curb cuts from hell, and frequently steep terrain.

MS symptoms of fatigue and incontinence also mean you have to maximize time. A mile loop over a paved walking path vs 4 miles, that’s as MS friendly as it gets.

Entertainment, snacks, re-enactors, and “Abe” well … that’s the FUNraising part of it all.

You are more than welcome to support and/or join our team, Patti’s Pride.   


Of course, Gettysburg is and will always be more than anyone person who ever walks or rolls there. To commemorate the 150th anniversary of the American Civil War, later in April there will be a reenactment of Union and Confederate troops advancing into town, skirmishes, living history encampments, and an hour long cannonade of 150 cannon shots to salute the brave men and women who fought in the American Civil War. Invasion of Pennsylvania – Gettysburg

However, I realize this blog is read far and wide so for your convenience here are links to find similar events near you MS Walk (USA), MS Walk (Canada), MS Wheel and Walk (UK), MS Walk & Fun Run (Australia), God Bless the Irish! They have a “muddy marvelous” MS Muck n Splash, India, Iran and more … Raising MS awareness with art, food and sport 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer 

MS awareness a crossword puzzle

Even awareness is puzzling when it comes to Multiple Sclerosis. March is “MS Awareness” month or week in the US. May is “MS Awareness” month in Canada. Internationally, World MS Day will be May 25^th. 

So why not a Sunday crossword puzzle dedicated to MS awareness?

A blog reader has the choice to click on the picture, print it out, and work the puzzle.

Patti and millions throughout the world have no choice as these life altering symptoms and more cruelly fill in the building blocks of their lives.  

Need the answer key to the crossword? I edited it into the close of a Feb. 2009 entry, EVERY DAY is MS Awareness Month / Week If only answers to living with Multiple Sclerosis were so easy. 

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

mooned by snails

An evening of modern hunter-gatherer bonding is a change not a chore for Patti.  Errands can make for a pragmatic and fun outing in the care facility era of living with Multiple Sclerosis.

          

Daily knee contracture therapy has so improved the ease and safety of transferring Patti we decided on some winter scootering at Walmart.

Visual impairment (legally blind) and navigating an aircraft carrier sized electric scooter is always interesting especially with small children darting between aisles like deer scampering across the highway, or colliding with shoppers with their faces in smart phones.

MS fatigue is always the trump card and began to ripple through other MS symptoms of attention, memory, and eye hand coordination. The scooter began to crawl forward ever slower.

I try to keep a running banter going masking verbal cues with conversation. Sometimes it goes astray. “Patti you are driving so slow -  some snails just passed us - stuck their hideous naked butts out of their shells - and mooned me!”

We lost all forward progress as Patti dissolved into uncontrollable laughter, in intensity and volume. Walmart might consider adding a ‘laugher’ along with their ‘greeter’. Soon not only were other shoppers passing us and smiling but starting to laugh also.

Once settled down, she seemed re-energized and we were picking up speed toward check out. … So why couldn’t I just keep my mouth shut?

“Patti, you are doing great! Keep rollin’ I see the snails up ahead. When we pass them, slow down, so I can 'drop trou' and get them back.”

With a screech of laughter she let go of the control - the scooter stops abruptly and Patti shaking with laugher starts to slide out of the scooter. Literally she would have been ‘rolling on the floor laughing’ if I had not caught her and straightened her laughing non-ambulatory self back into the seat.

EDSS>8 and ADL<1 may be quantitative measurements of Patti’s living with Multiple Sclerosis - but quality of life or wellbeing is another story and well, sometimes it takes a little help from those damn snails. 


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

transfer, cluster headache, MS, et al

I believe I know why I write, but I was surprised at what people read the most according to Google over the last 12 months.

              

Caregivingly Yours Top 10

one-person transfer technique, the hug  (March 2010) … there was nothing explaining simply and briefly how to transfer someone by yourself. Associated You Tube video, wheelchair transferring Multiple Sclerosis caregiver, has been viewed almost 12,000 times. 

cluster headache: brain writhing on a corkscrew (May 2009) … originally posted two years ago this entry and associated cluster headache entries are read so regularly I created their own page on my web site cluster headaches 

a caregiver reflects on the R-Word (March 2009) … written two years ago as a commentary on spending of resources it’s seemingly grown cyber-legs.

hope, liberation, and CCSVI (July 2010) … any and all things CCSVI and MS are worth talking about

monster truck wheelchair shopping cart (August 2009) … adventures with inanimate objects seem to hold their popularity J

respite care: teen autism & special needs (August 2009) … daily search results landing on this entry 18 months later have again spawned its own page on CY web site, living with teen autism 

fondue with Uhthoff's Phenomenon / Multiple Sclerosis (April 2010) … I suspect both the nomenclature and story telling make this entry interesting for those searching for affect of heat on MS

Multiple Sclerosis parenting nature vs nurture (May 2010) … no matter how trying the present, the future always trumps. 

teen autism: diagnosis, a hitchhiker's guide (January 2010) … a simplified thumbnail has continuing appeal

midget albino cannibals vs pilgrims and Indians (November 2007) … written over 4 years ago, obviously the Internet is a strange and wonderful place. What kind of a search leads to this?

Caregivingly Yours began as and remains simply our story of trial and error learned lessons. When ‘sharing with’ meets ‘searching for’ in cyberspace - it can get interesting. 


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