hidden symptoms of MS

MSAA (Multiple Sclerosis Association of America) has IMHO an excellent article in their Winter/Spring 2013 "The Motivator
…

The Hidden Symptoms of MS

Managing the symptoms that those around 

you may not easily see or understand

Along with stories on Pain with MS, Coping With Fatigue, Sleep Issues, Cognitive Changes and Visual Problems. MSAA Winter/Spring 2013 is one of the best I’ve read

In our story, hidden or ‘invisible’ symptoms were not really a factor except to isolate from the beginning any kind of support groups for Patti because others with MS were about as different as those without MS.

I appears if you do not receive their twice annual magazine then you can download a PDF version from the MSAA 'Motivator' web site.

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

an outing with Magoo

After her flu related attended bed rest for the better part of 5 days it was time to pick up Patti from her care facility for a push and roll through the fresh air especially on a sunny 53°F (11.7°C) Saturday afternoon in January.

Push and rolls accompanied with Multiple Sclerosis dementia are never boring. Encountering this statue Patti wanted to know “why  the f#ck was this guy holding a pen?”

Seeing no one anywhere nearby necessitating parental guidance controls on language, I plunged in. Reading the print I explained to Patti “it was a statue of Benjamin Rush, a signer of the Declaration of Independence.”

Patti: “So what! Lots of people signed that f#cking thing. Most of them were forced to!”

Me: “Wow! Perhaps you should teach history here”

Patti: “I couldn’t teach history – I’m too honest. I tell it like it is!”

Laughing out loud I begin to wonder who has the touch of dementia.

Continuing our push and roll I must confess to a guilty pleasure of enjoying Patti conversing with talking cross walk polls. It’s like going for an outing with Mr. Magoo. Patti wants more than a ‘wait’ or ‘walk’ … she wants to know “why”.  While on the other hand, whoever programs them “for the visually impaired” seems to think that people with disabilities simply lockstep obey commands. 

Whatever … sunshine, fresh air and laughter is free, disease modifying medicine for whatever ails you and IMHO probably better than half the stuff Big Pharma overcharges you for.

Patrick Leer

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

care facility multiple sclerosis caregiving

caring and the culinary arts III

Trying to be as scientific as the culinary arts and caregiving can be I expanded my experiments with finger food fruit bowl dinning to include those notorious chicken tenders and even boneless buffalo wings.

Whereas fried chicken tenders had caused chipmunking when eaten as an entrée they had no such effect when mixed into a finger food fruit bowl of cut up peaches, cut up strawberries, and grapes. Likewise when I cut up boneless buffalo wings again no chipmunking.

Yes, peaches have been the foundation of all these bowls. That is because peaches are Patti’s favorite, and when sliced up into bite sized pieces create a wonderful variety of shapes.

My vigilance in monitoring Patti’s eating, if anything, is increasing with these experiments; however what is extraordinary is that finger food fruit bowl dinning is dramatically reducing the need for verbal cuing.

Conventional wisdom and people with alphabet soup after their names would advise you with cookie cutter solutions of “minced food”, “feed the patient” or “puree”. I myself previously would never leave Patti with such freedom to self feed. … but for some reason it is working to extend this ability just a little bit longer.

I can only conclude:

1. To hell with table manners - finger food gives Patti’s one remaining able hand a sense of ability vs struggling with a utensil 
2. The combination of senses empower, touch and taste compliment sight which is impaired. 
3. Fruit has built in liquid improving swallow-ability 
4. Somehow the brain recognizing and processing the variety of shapes and textures in addition to the changing tastes must affect dysphagia in a positive way, almost as if putting it on hold.

At this point it’s time to enjoy what works. Pull up a bowl and get out your fingers. Welcome to Chef Patrick’s finger lickin’ good 'Multiple Sclerosis friendly' summer kitchen!

related entries

caring and the culinary arts II July 24, 2012

caring and the culinary arts July 8, 2012

by Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Technorati Tags: multiple sclerosis, caregiver, dysphagia, culinary arts,

caring and culinary arts II

Between bowls and bowl games and the NCAA channeling memory loss by erasing 14 years of football victories as part of its sanctions against Penn State University football, it was worth rummaging through storage for this 25 year old poster, “The Few … The Proud … The Lions”.  Patti is a Penn State alum.

Multiple Sclerosis visually impaired, my fellow holder got laughing so hard at my improvised description of the poster in my best sportscaster affected voice that I had to use her lap to support her end of the 1987 Fiesta Bowl victory poster. 

Of course to us the preeminent bowl is the bowl I use for my continuing experiments with caring and the culinary arts. Recently we tried reverting to a more conventional self-feed meal where food bites are similar, such as chicken tenders as the main entre.

Sure enough Patti reverted immediately to what I call ‘chipmunking’ her food. She just keeps putting pieces in her mouth forgetting either to chew or swallow. Unmonitored this can quickly create a choking danger. And this is why in the care facility era she has progressed to being fed in the assisted dining room rather than allowed to try and self-feed.

Soooo all the more I wanted to try reverting back to using varying shapes, textures, tastes and color of food pieces to try and keep her mouth rebooting (for the lack of a better word) with each piece and extending her ability to self-feed just a little longer. It worked like a champ just as it had last week. Today’s bowl featured Patti’s favorite cut peaches, black grapes, cut up strawberries, raspberries, and cut up chicken breast grilled in Italian dressing. No chipmunking! No choking! I wish I understood why.

With my own attention and time increasingly consumed by living with lung cancer, my lung cancer odyssey, I’m discovering that keeping all the balls in the air is a bit more challenging when suddenly I am one of those balls … and yeah it’s just a bit harder when Patti cannot remember. 

by Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Technorati Tags: "Mulitple, Sclerosis", caregiving, "Penn, State", NCAA

caring and the culinary arts

We once dined in restaurants like any other couple. We once did a lot of things before Multiple Sclerosis began stealing Patti’s abilities.

That was decades ago, this is now. Patti primarily eats or more accurately is fed at her care facility.

It’s no longer about fine dining it’s about safety as trained feeding assistants help Patti through meals in assisted dinning. The kitchen also stacks the deck preparing easier to swallow meals including mincing entries.

Progression of MS symptoms not only confounds her ability to chew and swallow (dysphagia) but see her food (visual impairment). Her failing ability to control her hands and arms makes getting food to her mouth with utensils an exercise in futility.  

While their teamwork is extraordinary, it seems to me that every once in a while texture diets and feeding guidelines can use some one man showmanship in the kitchen. Interestingly the care facility era ever challenges me to become better.

So I found myself inspired on the hottest day of the year to create a summer finger food entree specifically for Patti to try and enjoy at home. One handed finger food I should say, only her right arm works.

Why not grilled boneless chicken breast with a bowl of cut up fresh peaches, blackberries, and white grapes? My thinking was the mixture of berries and fresh fruit would provide an array of textures and shapes to stimulate her sense of touch over failing vision. The kaleidoscope of flavors I hoped would keep refreshing her cognition and attention. To prevent the chicken from seeming bland in contrast but not dominating as in BBQ, I grilled with a citrus stir-fried sauce (orange, pineapple, and grape) before briefly chilling and cutting up into bite sized squares.

The secret ingredient is verbal cueing … if you were nearby you would have heard “bite” … “chew” … “swallow” … interspersed with “now here take a sip of your drink to wash it down”. Verbally cueing Patti as she eats I sound more like a coxswain coordinating rowers as a rowing shell knifes through the water.

“Bangin’!” reported Patti as she safely finished her self-fed, one-armed, finger-food dinner bowl.

Caregivingly Yours, Patrick Leer 

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

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

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

wheelchair accessible corn maze

   On a 75°F (23.9°C) Sunday afternoon in October one voice in my head screams ‘corn maze’, while the caregiver voice wonders is there even such a thing as a wheelchair accessible corn maze?

   Googling and phone calls led me to Hayman Farms, seven miles northeast of Carlisle, PA. 

   Hayman Farms is a privately owned working farm venturing into agritourism.  Calling them I hear them say their maze is accessible but hearing their neighbor uses a wheelchair and is one of the first through the maze is all the proof I need. … The heart is always the best blueprint.

  Now add Multiple Sclerosis symptoms of short term memory loss and visual impairment (legally blind) on top of the bafflement of a 2 acre corn maze, … well, I am quite sure that Patti and I have never laughed so hard in the middle of a field of corn.

   Afterwards, we (OK, maybe just me) had time to grunt and squeak and squawk with the animals, "of courserous! Can't you?" While Patti and her goat buddy tried to ignore me, the sheep was captivated by my singing.

   As the day was simply marvahlous dahling, we headed next to picnic in Willow Mill Park . You just do not find many parks that have pavilions with ramps and an entire row of tables custom cut for wheelchairs. 

   What better way to end the day, then settling in on the shore of the Conodoquinet Creek for some whale watching.   …

   Never did see one but that’s OK, when the day started I had never seen an accessible corn field either.

   Adventures in accessibility are somewhat like a recipe. You take a dash of daydream mix in planning and work and with a pinch of good luck, let the good times roll.

Caregivingly Yours, Patrick Leer 

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

rollin' and howlin' in the streets

Halloween Я Us - its a family tradition for as long as I can remember.

Talk about mixed mythologies between my own earliest photographed Halloween costume as St. Patrick and our daughter’s first as an angel with two devils as parents.  

No doubt a psychoanalyst would have a field day with Halloween and me. For years I set up skeletons representing friends who had died and sat down for a beer with them at a patio table before Trick or Treat would begin.  The longer you live the more people you miss, now days it takes a parade!

With the temperature dropping just below 70°F (21°C) it was a magnificent evening for our small town Halloween parade and a bottle of Zombie Zinfandel with ‘friends’.

As the wheelchair pusher a special treat about parades is use of the streets closed to vehicles. Love that no sidewalk and no curb cut freedom.

Parades also seemingly fit Multiple Sclerosis symptoms like a glove. Short term memory loss and attention span are non factors. Life sized to larger than life unquestionably helps with visual impairment, and for a brief moment in this parallel universe sitting in a wheelchair trumps sitting on a curb.  

Dancing ghouls, cheerleaders, politicians, marching bands, fire trucks, floats, and costumes could only be made better by parade marchers giving out candy! So much candy that Patti actually said “no mas”.

For reasons I have never figured out Patti while wanting to attend will sometimes upon arrival transform temporarily into a total grump. As if on cue down the street toward the grump zone came an exuberant bouncing pack of cheerleaders and aspiring mini-cheerleaders. As if guided by some mystical unhappiness antenna they stopped pivoted and performed a happy cheer. Turning to caution Patti not to be rude I found a laughing clapping Patti. Never underestimate cheerleaders as healers.

Politicians I found a fascinating addition to this year’s parade and created the opportunity for some spontaneous chat about upcoming election choices. I do have to credit Patti for raising the quintessential political tiebreaker, “which one is giving out candy?”

Caregivingly Yours, Patrick Leer 

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

jumping through hoops for ID

Locally banks are open in the evenings until 8 PM, grocery stores are open 24 hrs a day, but PennDOT (Pennsylvania Department of Transportation Driver and Vehicle Services) locally has only one day a week with extended hours until 6 PM. We are talking State employees, who works for who here? 

Throw in Multiple Sclerosis, a wheelchair, legally blind, cognitively impaired, dependent on others and PennDOT may as well make the disability community do tricks to get services.

After two visits finally Patti was able to renew her Photo ID card. In post 9/11 America you really need a photo ID for just about anything.  

I have no argument with the need just the PennDOT process. Our first attempt was rebuffed after renewing on-line and taking the extra step to call ahead and confirm we had everything we needed. Upon arrival we were told we needed yet another form for a renewal photo that was only available during ‘non-extended’ hours.

In round two, the photo taker says to Patti, “the computer screen will now display a series of questions. Please read and answer yes or no by entering a …”

Patti: (turning to me) “What the f#ck is she talking about?”

I try to explain that Patti is not only legally blind but has Multiple Sclerosis symptoms of memory loss and cognitive impairment … Regardless the questions ‘must’ be answered! On we plunge ‘reading’ questions about organ donor awareness, voter registration, and is the information on the screen you cannot see correct.

God Bless Patti as she consistently responds to yes or no with, “Who the f#ck cares!”

One last dog and pony show trick remained. Patti had to sign her name in a tiny virtual box with a fake pen. The fact that the counter could not be accessed from a wheelchair was the least of the obstacles for a legally blind person with lack of eye hand coordination, and a shaky hand.

Hallelujah!!! Patti now has a renewed Pennsylvania Photo ID valid for 4 years! In Patti’s words, “NOW can I just get a ciggie!”

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

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

musings: patrick ponders

Kipona Festival: basically accessible always enjoyable

Sharing a peach milk shake we watched Iroquois social dancing that is until the ‘smoke dance’ was announced. To Patti that meant they can dance, I will smoke. Not sure if that was the correct interpretation but all had fun.

Harrisburg’s Kipona Festival held each year over Labor Day weekend along the Susquehanna River is ranked one of the top five in Pennsylvania. For me pushing Patti’s wheelchair it is also basically accessible, though a thorough workout with probably 5 miles needed to see everything and return to where you started. Miles of paved surface abound though full participation necessitates frequent off-path navigation over ADA exempt Mother Earth.  

Calling ahead to Patti’s care facility to give them a head’s up that I would be picking Patti up earlier than usual; I was greeted by a rarin’ and ready to go Patti. Staff had kindly gotten her up from her afternoon nap, changed, dressed and out of bed. With progression Multiple Sclerosis caregiving becomes quite physical and there is nothing like a 'fall on your knees thank you' kind of moment to start an outing.

Admission is free and always a plus. While there is a parking fee on City Island, the location of accessible parking alone is frankly worth more than the $5 as you literally park in the festival.

With temps of 85°F we were never going to be able to experience it all, but we didn’t care.

Bling shopping at festivals is Patti’s favorite activity. Unlike retail stores the folding tables of vendors are ideal for seeing when visually impaired and touching. Vendors never cease to amaze me with their courtesy and attention to Patti and both her abilities and disabilities. Today’s find was from Suhailah’s Unigue.  

Rolling over the Susquehanna River I am always mesmerized at the picturesque view of bridges while Patti’s view is somewhat more a moving forests of buttocks

Heat eventually trumped and we settled into an uncrowded shady spot simply enjoying the breeze and watching a sternwheeler and the river.

When living with Multiple Sclerosis as a family sometimes you just have to carve out and enjoy your own event within an event, not unlike a dream within a dream.  

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

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

musings: patrick ponders