Dear Santa, please send a cure for Multiple Sclerosis

The other night we watched a TV commercial for some speech software as a young woman gushed on about how it changed her life as she could now type while driving, walking, etc. just by talking.

The young spokesperson had no noticeable disabilities except lack of time in her exciting life to type.

I doubt she was even born by the dawn of such speech technology for people with disabilities. From Microsoft to Verizon those early geeks could not have been more patient if not even fascinated with Patti’s Multiple Sclerosis speech that absolutely baffled the earliest software.

Try as they may the spawn of Gates and Jobs just never have kept the promises of Hanna-Barbera, or Gene Roddenberry when it comes to the technology we all were ‘promised’ in the future.  Where are our robot maids or aerocars of the Jetsons?  I still step outside once a day, open my flip phone and when no one is looking whisper "Beam me up, Scotty" … but I’ve never been transported.

Instead we are inundated by gadgets while not a single disease has been cured since polio in the mid 1950's. 

Dear Santa,

     Please bring a cure for Multiple Sclerosis for Christmas. My wife’s physical and cognitive progression only increases and now I have lung cancer. We have never asked before in 23 Christmases living with MS, either we were too busy being parents or praying for someone else. We are running out of time. Time is neither our friend nor that of any family living with MS

Big Pharma does not want to cure anything, time is profit to them. 

Earlier this year the bad elves at NASA ‘punked’ Mars by spending a zillion dollars to send a state of the art computer/lawnmower. Maybe you could simply swing by and pick it up. Put it under someone’s tree to start working on a cure for MS.

Speaking of those bad elves at NASA Santa, whatever happened to jet packs? I saw James Bond and Will Robinson using them in the 60’s.

I know you can’t grant every wish, but if you can’t send a cure for MS for this Christmas could you find two jet packs for us. Hovering around together would be so cool compared to the over 5,000 miles (8,000 kilometers) of push and rolls through the decades.

Thank you and "God Bless Us, Everyone"

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

luminaries, a lake and Multiple Sclerosis

As if a push and roll outing around a lake surrounded by 400 luminaries and a lighted floating Christmas Tree was not enough … 

“With the economy the way it is, and how things are going in the world today, we wanted to give back to our community.” … “Everything is free”

Christmas by the Lake at Children’s Lake in Boiling Springs, PA felt like falling into a Currier & Ives lithograph when members of a ‘town band’ arrived to play holiday music and a high school choir to sing Christmas carols. … all that was needed was snow!

Of course in our story everything revolves around Multiple Sclerosis.

MS related dysphagia restricts even a free menu of hot chocolate, coffee, hot dogs, homemade cookies, pumpkin bread and chestnuts roasted on an open fire. However with some teamwork and verbal cues we were able to enjoy hot chocolate and homemade cookies. I suspect I enjoyed the roasted chestnuts more than Patti. Ohhh how I once loved bags of roasted chestnuts on the streets of NY.

You may notice the mittens pictured on Patti. Chronic fidgeting has been, and is, one of the more frustrating of her MS cognitive symptoms. This long ago torpedoed the catheter era and continues to confound transporting her when she repeatedly disconnects her seat belt while I am driving and need to stop to reconnect.

Wearing her mittens usually keeps her from manipulating most objects and endlessly putting the mittens on and off it seems to satisfy her fidgeting.

Though having mittens on this balmy sunset, 48°F (8.9°C), was fortuitous as they were ideal for holding the hot chestnuts until they cooled enough to eat and for holding the pictured luminary for a creative photo op.

Accessibility in general can be a challenge especially after dark. Fortunately any time a town closes streets to traffic for a community event it exponentially increases its accessibility rating.

Did I mention “free” horse drawn carriage rides? Probably not, MS fatigue eventually trumps all … sooner than later all Patti really wanted to do was go to sleep. 

Patrick Leer

BLOGS:

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

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

multiple sclerosis caregiving care giving

reindeer flying drunk vs MS

Memories of Christmas morning broke new ground this year with a phone call from Patti’s care facility that she had been found on the floor next to her bed about a half hour before dawn.

After physical and neurological examination she appeared OK and had no complaints nor remembered anything. Of course Multiple Sclerosis related memory loss, Patti’s MS short circuiting of pain neurotransmitters and probable shock confounded examination.

Incoming day shift found her during 7 AM ‘observation’. Overnight shift reported her asleep in bed at the previous hour’s 6 AM check.

Nursing staff wanted to keep her up and alert, just in case (some kind of concussion protocol), and on priority monitoring and evaluation. After a couple hours – a bruise beginning to develop on her knee was the only observable concern.

Continuing with plans to pick Patti up for Christmas Day with family still seemed the best of possible ideas.

All things considered, in fact, Patti was firing on all cylinders right through the day. Patti never gets up as early as 7 AM and has not gone without at least one mid-day nap for at least a decade. She was beyond impressive for someone who began the day falling out of bed, participating with over a dozen family members in Christmas Day festivities .

After about the umpteenth time of pestering her if she remembered anything about how she ended up on the floor - she turned to me while riding in the van and said, “the damn reindeer were flying drunk.”  

You got to love it!

For the First Day of Christmas, I do know that Patti is getting the return of two bedside fall mats and that beginning last night her high-low mechanical style bed will be lowered to as close to the floor as possible when sleeping, about a foot (30.48 cm) off the floor.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

disability perspective / MS

Q ...What is a disability perspective?

A ... disability perspective is a viewpoint that considers the needs and aspirations of disabled people and their families.

I offer as an example a tale of two stories...

“Christmas By The Lake” Boiling Springs, PA

When surreal becomes real, you’re just glad you were part of it.  “Christmas by the Lake” hosted by the Boiling Springs High School Alumni Association could not have been a more enjoyable winter outing.

Upon arriving we found wheelchair van accessible parking available in front of Appalachian Trail Conservancy.

Lowering our van ramp we found ourselves also in the staging area of the Pioneer Girls (a variation of Girl Scout Daisies) and parents. Our ‘transformer’ van quickly became show and tell to young inquiry minds who in turn shared with us all their exciting adventures lighting the luminaires. We laughed and smiled as the curious ‘heart of childhood’ embraced differences so honestly and innocently.

Our push and roll around the lake was mesmerizing with hundreds of real luminaries plus a fully lit Christmas Tree floating in the lake. Patti in her wool cape, mittens, hat and buggy bag wheelchair lap blanket declared she was “quite toasty” in spite of a ‘real feel of 29˚F (-1.6˚C)’.

When we needed to abandon the path and use the side of the street for a block, the reflective strip on Patti wheelchair lap blanket shone like a beacon in the lights of approaching cars.

Christmas music filled the air, Santa roamed about ho ho hoing and chestnuts and marshmallows were available for roasting over a fire pit.  Everything was free including hot chocolate, hot dogs, and Christmas cookies. MS symptoms of dysphagia restricted us to hot chocolate and cookies but that was ‘no problemo’, they were delicious.

Horse drawn carriage rides were also available but we did not explore as rarely are they easily accessible and Patti could care less - she already has me, her trusty one-man open sleigh horse.
----------------

Now the same event as reported by mainstream media … Lights line the lake in annual Boiling Springs event
----------------

12% of Americans are affected by disability, add in their caregivers and families and you are talking about a quarter to a third of any community’s population.

Including disability perspective into news or promotions is not about political correctness, it is inclusive and welcoming to people of all abilities.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

dreaming of a purple Christ…MS

Decades ago, maybe even the last time Patti ‘walked’ into a church, we had a Christmas tree lit with all purple lights. Our young daughter, along with all the children, was invited up to the altar to talk about Christmas. Long story made short the kids were asked about Christmas lights. When Megan offered purple, the minister corrected her pointing out there is no such thing as purple Christmas tree lights.

A harbinger of what she would face in school when teachers would mis-teach Multiple Sclerosis either working from out of date textbooks or sharing mild MS as an example.

It would not be until her senior year of high school that Megan actually had a teacher who personally knew what growing up living with severe MS was about. She, like Megan, had spent her youth with a Mom in a wheelchair dependent on others.

Lack of awareness by others is part of living with MS as a family, affecting not only the mysterious diagnosis but equally significantly the daily life of all family members.

Holidays are a good time for common denominator examples. ‘Normals’ put a tree in a stand and admire, while living with MS you discover you need to secure the Christmas tree as stable as a grab bar. Patti has pulled more than one tree down on herself while trying to be involved. For years I secured our conventional tree stand to a square of 3/4” (19 mm) thick plywood. Several years ago I simplified and bought a 30 lb (13.6 kg) steel stand with a leg span of almost 3’ (.9 m) made by Bowling Enterprises of Bear Lake, MI.

Being no longer able to stand, legally blind, failing eye hand coordination, and down to use of only her right arm - were you to overhear our ‘assisted’ decorating you might be surprised at the laughter of involvement.   

Purple is not only Patti’s favorite color but a combination of contradictions, hot red and cool blue. Perhaps not traditional Christmas but then again living with MS as a family we jumped that traditional track long ago.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

losing my mojo / MS caregiver

Putting up this year’s Christmas decorations I was struck by how much I’ve lost my mojo through 22 years of Multiple Sclerosis spouse caregiving.

Medical science monitors progression of an illness or disability but ignores that the family also progresses. Then again how do you measure downward economic and social mobility? How do you measure a childhood sacrificed? How do you measure the physical and emotional toll of choice? How can you even explain it when you put ‘care’ before all the other understandable motives such as life, liberty, and the pursuit of the happiness of career, income, and all the trappings of normal life? … How do you measure the loss of a caregiver’s mojo?

The following 20 second video captures what our yard looked like at Christmas time in the earliest years of juggling MS caregiving and basically single parenting.

Believe it or not that’s even scaled down from my pre MS caregiving lawn decorations. Whether you are a fan of excessive Christmas decorations or not, what is important is it was ‘me’ – I enjoyed it I - my mojo was running on full throttle.

Pictured below is now – two decades later …

While my blow mold plastic may be considered vintage to some, I’m quite sure I’m hearing polyethylene whispers about losing my mojo.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer  

If wishes are challenges ...

If wishes are challenges … then this must be Christmas

Our wheelchair van failed us on Christmas Eve. So it was back to the old days and old ways of transferring to and from wheelchair to vehicle, except progression of Multiple Sclerosis symptoms had erased Patti’s old days abilities to assist in transferring.

Vehicle transfers unlike a pivot transfer (one-person transfer technique, the hug) from wheelchair to bed necessitate a contortionist extension of a caregiver’s / carer’s back into the vehicle.

Toss on top of holiday amplified Multiple Sclerosis symptoms the stress and confusion of being twisted, pushed, and pulled in and out of a vehicle unlike Patti has experienced in years and the best present of all was that our journey into Christmas past ended without a fall through a total of eleven transfers.

Today Patti’s needs of daily living are supported by fresh shifts of staff and lifts while I try to stretch myself back into something resembling an erect standing person and our wheelchair van waits in a repair shop lot. Should a Christmas entry feel like a battle casualty report?

For most Christmas is and should be about enjoying dreams of dancing sugar plums followed by a frenzy of tearing open presents. … For others well it can be somewhat different.

- A layoff, an illness or a death in the family can change everything. People spending Christmas at this emergency shelter never imagined this would be their Christmas. Strangers band together to celebrate the holidays

- When surgery prevented a caregiver parent from carrying their 75 lb child with cerebral palsy up 14 stairs to his bedroom, a high school student athlete volunteered his time, arms, back and heart. A simple act elevates all 

Like reading tea leaves, may we all see hope in the litter of Christmas wrappings.

… And so this is Christmas

For weak and for strong

For rich and the poor ones

The road is so long

A very merry Christmas

And a happy New Year

Let's hope it's a good one

Without any fear …

John Lennon and Yoko Ono, 1971    

Caregivingly Yours, Patrick Leer 

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

167 year old humbug

Happy Birthday to “A Christmas Carol” by Charles Dickens, published on December 19, 1843. 

A ‘ghosty tale’ from another time and place. - Christmas fiction or is it? 

`At this festive season of the year, … Many thousands are in want of common necessaries; hundreds of thousands are in want of common comforts, sir.'

Caregivingly Yours, Patrick Leer 

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

snow falling and a bag of candy

Swirling light snow made the drive feel like riding through a snow globe. Ending up at a candy shop, well can it get much better than that?

More than a candy shop, think ‘blast from the past’. Georgie Lou's Retro Candy and Gifts, Carlisle, PA. 

Even though I could not talk Patti into bicycle streamers or a bicycle horn for her wheelchair, we laughed and laughed our way through aisles that may as well have been memory lanes of candy, metal lunchboxes and pop culture before it was ever pop culture, just something called childhood.

Building access was totally wheelchair accessible as was 99% of the store. The end of one aisle was too tight for Patti’s chair.

Afterwards riding in our wheelchair accessible van less than a mile away I asked Patti if she remembered where we just were. “I can’t remember, Lowe’s I think” she answered. (Lowe’s is a city-block sized home improvement and appliance store.) J

When cognitive and memory challenges become part of life you loose the ‘bounce’ you would traditionally get from doing something together. As a carer / caregiver you learn to live in the now.

When it comes to good times, well you are kind of left holding the memory bag for both of you. Sometimes it’s like a bag of candy, what Multiple Sclerosis may prevent you both remembering, you can always still enjoy sharing.

Caregivingly Yours, Patrick Leer 

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

holiday caregiving: visiting long term care

Holidays are practically synonymous with visiting family and friends. When visiting a care facility or nursing home, physical and or cognitive challenges are part of a visit; hey it’s OK to be unfamiliar. Not everyone is a caregiver /carer.  

Bearing gifts can provide both a comfort level for the giver and anything from fun to pampering for the receiver. Just remember care facilities are not private homes so if you are not familiar with their protocols call ahead and ask.

If I were to open a gift shop for visiting … “care facility gift shop suggestions”. 

Don’t get too focused on gifts having to be objects. The best gift of all is time.

Bringing a couple cups of real hot chocolate with 'the works' could rival Santa coming down the chimney.

If there are dietary concerns, most coffee shops offer a range of sugar-free, dairy-free, etc options to go. Depending on abilities, you may need to transfer to a sippy cup but still you’ve done good!

Bring something to facilitate interaction, for example pictures, holiday cards, or a game. Props can only help when memory loss or cognitive impairment might challenge conversation alone.

Family pets always get left out of holiday activities; if you own a sociable pet bring them along. Call first, but most facilities welcome pet visitors. Don’t be offended if your pet gets more attention than you.

An outing could be a treasured gift. Towns small and large are decorated for the holidays; many communities have drive through illuminated displays. If you are unfamiliar with transferring someone to a passenger vehicle, just ask. Facilities are glad to help you if you can be patient. … or you can always splurge and rent a wheelchair van or hire an accessible taxi for a couple hours.

From the comedy of George Burns and Gracie Allen … Gracie comes home from the hospital after visiting a sick friend.

(George) 'Where did you get the flowers?'

(Gracie) 'I went to visit Mable.'

(George) 'Yeah, so?'

(Gracie) 'WELL, you told me to take her flowers!' 

Caregivingly Yours, Patrick Leer 

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

holiday caregiving tips: the abilene paradox

While trying to enjoy the holidays as a caregiver / carer, or with a chronic illness / disability do you ever find yourself boxed into a position that no one really wants simply because no one wants to speak up?

Believe it or not there is a name for this, the Abilene Paradox.

Long, long ago before Multiple Sclerosis, even before we were a couple Patti invited me as her date to an award dinner for the paper company she worked for (and yes decades before “The Office” made paper companies fashionable J).

The keynote speaker shared the Abilene Paradox which obviously so impressed me it has stuck to this day. Told as an anecdotal concept of unsatisfactory group decision-making, it was a story of one family’s decision to take a trip to Abilene that no one individual member actually wanted to take but no one wanted to “rock the boat”.

Years ago sitting at home with our infant daughter and Patti listening to holiday music following Patti’s first major MS exacerbation and hospitalization, the absence of outdoor holiday lights came up. I had always gone overboard illuminating basically anything on our property even making it to the top 10 list of holiday displays in our county paper. Obviously life had changed with MS now in ‘our family’ and I claimed this was cool with me. The next day I came home from work and found a single strand of lights on an indoor plant and boxes of my outdoor lights lined up by the door. I could only smile - this family was never headed to Abilene.

Holidays bring together a lot of people many with no frame of reference for daily life with caregiving, illness, or disability. Resist the urge to all rush to agree on something. Speak up! Communicate preferences and needs!

Enduring vs enjoying holiday time together is a choice. 

Caregivingly Yours, Patrick Leer 

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

stranded in the snow

Driving home from Washington DC Friday evening (Dec 18) with only the earliest traces of snow beginning to fall, another driver lost control of his car spinning across 4 lanes of traffic ricocheting off a Jersey barricade and ending up crashing onto the front of my car.

Fortunately no one was injured, unfortunately my vehicle was disabled. Towed to the closest hotel I was swallowed by the ‘Blizzard of 2009’ as snow continued to fall for over 24 hrs totaling 22 inches (56 cm).

With daylight I went hiking in zero visibility snowfall in only walking shoes to forage for toiletries, food, and a change of socks and underwear. I discovered a Burger King basically catering to snow plow operators. When is a whopper “haute cuisine”? When it is the only hot meal in 36 hrs.

Stranded you meet people you never would have ever met or shared a warm cup of coffee with. After two nights at a Red Roof Inn I was finally ‘extracted’ Sunday afternoon by Jennifer and Tyler!

Procrastinated shopping and holiday activities are now replaced by insurance related activities and ‘waiting’.

It is oh so easy to be blinded by frustration when there really is so much to be grateful for. Even the driver who crashed into my car called me to apologize and thank me. He had been praying and thanking God for sending me to that moment in time when his car was spinning out of control; so many catastrophic outcomes could have happened.

So far, GEICO representing him could not be trying any harder to make things right. While tempted to declare their gecko as my new BFF, let's see how this plays out, first.

When I finally could spring Patti for an outing from her care facility she was in good spirits and ‘yes, no, maybe’ kind of aware of my odyssey. Multiple Sclerosis memory loss and mental confusion creates its own timeline. Though she was certainly ready to roll decked out in her wheelchair gloves and holiday painted nails.

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