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

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 

physical caregiving Multiple Sclerosis

Physical caregiving intertwines everything and anything you do for so many, in our story it’s about Multiple Sclerosis caregiving.

Tuesday night our wheelchair van suddenly sputtered and stopped running. Coasting to a stop we basically ended up half on a pseudo-shoulder and half in a corn field.

No problemo! I’ll call AAA. I suspected it ran out of gas, the gas gauge has been wonky ever since we were rear ended last Summer. Keywords like wheelchair van and wheelchair passenger escalated the response from simply sending a can of gas to dispatching a special tow truck which would take over 45 minutes, and suggested emergency rescue by police or EMS for Patti since it was below freezing.

Turning to Patti I explained “it could get real interesting” but in the meantime we could always tell ghost stories. We were in a corn field, remember Stephen King’s Children of the Corn?

As Patti glanced out the window, I screeched at her in my best psychotic child voice, “I will send outlanders amongst you: a man and a woman!”

Jumping almost out of her chair, she grouched back at me, “You can be such an asshole! Now just give me a ciggie.”

Obviously she was going to be no fun to share the waiting time with so I called our daughter who rendezvoused with our other car.

I figured that if Jack LaLanne at 60 could swim San Francisco Bay handcuffed and shackled towing a 1000 lb boat, then I could get Patti out of our van through this corn field and into our car. This one’s for you Jack!

Sensors in our ramp wanted nothing to do with the terrain so switching to manual I dragged it open to an interestingly elevated deployment, nearly jumping out of my own skin hearing sounds of snapping and crunching behind me. It seems our daughter had decided to clear a path by stomping corn stalks.

Accompanied to a soundtrack of exclamations and expletives the operation was a success; exiting up the ramp, plowing Patti’s chair across the frozen, snow crusted terrain, and improvising an all terrain one person transfer lifting her out of the chair and into the car while Megan simultaneously pulled her in from inside.  

Leaving Megan with the van, listening to the State of the Union on the radio (the State of the Union is always a parallel universe for us caregiving families), I took Patti on to her care facility physically transferring her out of the car into her wheelchair and reversing the process into bed.

AAA was completing their visit as I returned to the corn field. A little gas had the van running just fine. Even the police finally pulled up. Apparently different sides of the street are different police jurisdictions and 'somehow' the address became 'confused'.   

Somewhere in a Pennsylvania corn field a farmer may notice a peculiar crop circle  - just another mystery in that thing called physical caregiving.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer 

are you fit to care / exercise

Getting in shape tops many New Year’s resolutions but in over 20 years as a caregiver / carer it was never even on my radar.

Up until 4 months ago if you had told me I would belong to a gym – well, in texting speak ROFL.  

Before 4 months ago, multiple transfers in a day could cause me such back pain that not only was my life affected but Patti’s outings were often suspended.

Christmas Day I transferred Patti a dozen times, most of which involved lifting her in and out of a vehicle. Yes I awoke stiff and stooped the next day but nothing that a couple iboprufen didn’t erase.

Perhaps it was spandexphobia or anxiety of being surrounded by bodybuilders but a gym seemed alien to me. That is until I found Planet Fitness.

Their un-gym atmosphere is as appealing as the $10 a month cost.

Transferring Patti or anyone involves different muscle groups. As a carer / caregiver your body tells you which muscle groups ‘feel’ the sorest. 

Their 30-minute circuit workout is a user friendly series of stations with level and pulley machines for each major muscle group. Adjusting weight while working through the cycle, I can strengthen what I need. Plus there is a cool traffic light which signals you when to start and stop the exercise and switch machines.

While the circuit workout has phenomenally benefited transferring Patti, the two miles of power walking on a treadmill during my visits has energized wheelchair pushing. Previously I would train every Spring prior to a MS Walk by pushing Patti increasing distance, speed, and incline of terrain. Since Planet Fitness we zoom around miles of wheelchair accessible trails regardless of time of year or terrain.

By bringing along my audio book each visit doubles as a healthy book listening ‘hour’.

It took me two decades to figure out that athletes train their bodies just to play games. People actually depend on the bodies of caregivers / carers.  

Caregivingly Yours, Patrick Leer 

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

calories oppose freedom

“He ain’t heavy, he’s my brother …” could only be sung by someone who never lifts another human being on a regular basis.

Loosing weight tops New Year’s resolutions.  I would like to add a unique motivation - if you are not easy to lift your quality of life and options will be less.  

Every second that everyone one of us lives we only grow closer to the day when we will all need the assistance of another for our activities of daily living.

Whether care facility or home care weight affects freedom. The difference between a visit and an outing is lifting.

For many of us, even before we arrive at our own need for assistance, we will spend years even decades as caregivers / carers. Excess weight can cause or contribute to back pain and that is an option that carers / caregivers do not have. You are what you can lift.

I do not mean to shock those who worship at the Church of Gadgets but there is no lifting attachment on a Swiss Army Knife or any lifting app for a phone. Sorry you can’t even tweet about it, takes two hands.

Whether a lifter or a liftee or simply in line waiting -   hey, let's be careful with the calories out there!

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
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 

knee contractures / newly diagnosed MS

We were out and about the other night enjoying a summer evening, due in large part to the ongoing success of Patti’s daily therapy for Multiple Sclerosis knee contractures. 

                          

Easier and safer one person transfers equal more outings plus prolonging my back is in both our best interests. When Patti can extend her legs during a transfer everything just comes together.

For whatever reason care facility staff and Patti have been into a groove about putting on the softpro static gel knee orthosis when Patti settles down for her afternoon nap. Sounds so simple yet like anything involving team work you can assemble a team but that does not mean they will accomplish anything.

Certified nursing assistants (CNA) assist Patti into bed. The licensed practical nurse (LPN) needs to put on the knee orthosis as it is ‘prescribed’ therapy.  And of course Patti who can have rather strong feelings about the knee orthosis as a royal pain in the ass. … for whatever reason they are clicking.

We encountered a young woman we knew, out with her two young children. Greetings and salutations froze on the summer breeze as she shared that she had just been diagnosed with Multiple Sclerosis.

Time just stopped.

“Couldn’t it be something else?” “Couldn’t they be wrong?”

We listened. We cared. We shared our time and ourselves.

Likely we were a better audience than most since we had no questions about ‘what is’ MS.

With Patti’s own MS diagnosis in long term memory, she participated in the conversation, even helping with the refreshing sound of laughter as they shared a laugh over “neurologists suck!” and the absence of social skills in rocking someone’s world with a diagnosis of MS then reminding them to make sure to stop at the receptionist to make your next appointment.  

As a MS caregiver for 20+ years my focus evolves with Patti’s MS progression. Yet for 200 people a week in the US the journey is just beginning.

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

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

musings: patrick ponders 

Accessible adaptive vehicles Pennsylvania

We struggled for longer than we should with Patti’s failing ability to transfer from wheelchair to our car. In part this was ignorance of options. Caregiving does not always leave a lot of time for searching especially when you are not exactly sure what you are searching for.

These days while out and about using our wheelchair accessible van we often attract inquiring minds and answer questions as best we can.

It occurred to me that since the journey from need to finding an adaptive vehicle is still pretty much a needle in a haystack compared to conventional auto shopping that I should compile a list of Pennsylvania adaptive vehicle facilities offering modifications and service. Most additionally sell wheelchair accessible vehicles both new and previously owned.

So, if you want to ask some questions AND kick some tires …

VCI Mobility

www.vcimobility.com

Norristown, PA

800-784-8267

Galbreath Mobility

www.galbreathmotorco.com

New Castle, PA

724-656-1075 / 724-656-0866

Haveco

Harrisburg, PA

717-558-4301 

Keystone Coach Works

www.keystonecoachworks.com

Bethel Park, PA

412-833-1900

MITS Corporation

www.mitscorp.com

Glen Rock, PA

800-243-6487

MobilityWorks

www.mobilityworks.com

Wall, PA

877-275-4907 / 412-824-8091

Ride-Away handicap equipment corp

www.ride-away.com

Norristown, PA

888-743-3292

Spliter, Inc

www.spitlerinc.com

Montoursville, PA

570-368-1771

Total Mobility Services

www.tmservices.com

Boswell, PA

814-629-9935

WEBB Medical Systems

www.webbmedicalsystems.com/adaptive-driving-systems.asp

Shillington, PA

800-266-6633

While more random, it is not impossible to find an adaptive vehicle on a local car lot, and you can find adaptive vehicles through classified advertising both local and interstate such as Disability Dealer Magazine.

Money is ALWAYS a factor and “The Pennsylvania Assistive Technology Foundation (PATF) is a non-profit organization that provides low-interest loans for people with disabilities so that they can buy the assistive technology devices and services they need”.

Pennsylvania Assistive Technology Foundation  www.patf.us/

King of Prussia, PA

888-744-1938

Realizing this blog is also read outside of Pennsylvania, click on Alternative Financing Technical Assistance Project for assistive technology loan programs in other states.

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

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

musings: patrick ponders

one-person transfer technique, the hug

Out and about living with Multiple Sclerosis transferring to and from a wheelchair basically comes down to the assistance of one person and the epitome of caring, the hug.

Technically correct or not, this is how we have successfully and safely executed the one-person transfer hug for almost 15 years.

PREPARE

Remove potential transfer obstacles such as wheelchair leg and foot rests.

Optimum positioning is theoretical; we deal in ‘best of possible’. Position chair remembering this is a “pivot’ transfer, at most you will be moving only one foot.

Engage wheelchair brakes and double check.

COMMUNICATE

Talk through your transfer plan including both your role and person in wheelchair’s role. Avoid directional words such as right and left, remember you are facing each other this gets confusing. Pantomime is not only effective but often humorous and a little laughter goes a long way to reduce transfer tension.

POSTIONING

Toe-to-toe knee-to-knee I lean down toward Patti. She hooks her arms around the back of my neck. I put my hands around her lower back.

I use a three count countdown to transfer. On ‘one’ and ‘two’ I rock Patti forward giving her a sense of the momentum and dynamics then release her back to an upright seated position. Additionally this gives MY back and knees two quick stretches before transfer.

On ‘three’ I squat, pull Patti forward toward me, and I begin to stand up to a hug, encouraging her to extend her legs to ‘touch the floor’.

Important: Never hesitate to abort transfer if either you or the person you are transferring is experiencing pain. Simply release them back into wheel chair and seek assistance.

PIVOT

IF Patti has extended her legs then I simply pivot ‘us’ at target and lower her by squatting down and releasing hug. We might even be confused for dancers.

Now if Patti ‘has not’ extended her legs … well then it resembles whatever it takes to end safely.

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Neither life nor life’s challenges come with a how to manual. People sharing their experiences can often be the best of possible windows.

related ‘caregivingly yours’ video
wheelchair transferring Multiple Sclerosis caregiver 

by Patrick Leer

BLOGS:

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

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