If it ain’t broke don’t fix it

While this phrase has certainly evolved into a down home cliché about sufficiency I personally have found that it does not translate well into advocacy in the care facility era.

Joint contractures are a good example of this challenge. Contractures are a preventable source of excessive disability but this is Multiple Sclerosis and muscles act weird, dysfunction begats dysfunction. Believe me not everyone, including myself, is on the same page for a boatload of reasons.  

Sometimes advocating is about trying to prevent things from worsening.

Sooooo it ‘ain’t been broke’ in so long I got curious and dropping by early to pick Patti up I found her in physical therapy room, strangely laughing while doing her assisted knee contracture exercise instead of cursing and swearing her traditional therapy language. Therapist shared her ‘numbers’ reflecting Patti’s improvement as I shared my anecdotal evidence that I could not even remember the last time she did not extend her legs when I transferred her.

In talking we discovered my own health issues had apparently played a beneficial though unintentional role. Just before my lung cancer surgery the time of day for Patti to wear her braces was changed to early evening. Laying in bed Patti was unable to tinker with braces making then ineffective as pictured to the left. So evening LPN’s began applying braces around 7 PM and removing each night at 11 PM when overnight shift arrived. Unencumbered overnight sleep was as important as the 'low-load, long duration stretch'.

Prior to my lung cancer surgery I would often return Patti later than earlier and was working on my average of 3-4 outings per week. The problem was that by doing so I was short changing the duration of ‘low-load, long-duration stretch’. When our daughter stepped in during my recovery from surgery to pick Patti up and bring her home for visits she improved two critical things. She reduced the outing equation to 3 and since she does not physically transfer Patti herself learned from staff that they usually transfer Patti to bed after dinner approximately 6:30 PM. A timetable which not only is MS fatigue friendly and Patti prefers but enabled a regular nightly schedule of 4 hrs of low-load, long duration stretch.  

Sometimes advocating is also about learning better ways to accomplish the same thing.

previous related entry: contractures Multiple Sclerosis

Patrick Leer

BLOGS:

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

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

care facility multiple sclerosis caregiving

please take your medicine / MS and chronic illness

“Please take your medicine?


50% of chronically ill people need a better reason

People hate medicines. It’s a fact of life. As many as 50% of people with chronic illnesses don’t take their medicine correctly". Euro RSCG Tonic 5.0 Survey

Isn’t it ironic that one of the world’s top global marketing companies Euro RSCG (representing Big Pharma giants Novartis, Merck, Sanofi, and more) gets it …

… yet between Multiple Sclerosis symptoms of memory loss and mental confusion, Patti especially when prescribed something or treated with something she does not like - often tinkers with the best laid plans of mice and caring people.

When not repeatedly monitored or involved with people for the couple hours she is supposed to wear her braces for daily low-load, long-duration stretch for knee contracture therapy she simply forgets and fidgets with braces. The pads with velcro x's half way down her shins should be positioned over her knee caps. As pictured and worn they accomplish nothing.

Or recently one of her bedtime medications was changed from a capsule to liquid. Yet liquid was so foul tasting Patti gagged or choked reaching a point of refusing to take. Intervening as her POA I discovered no one really knew why the change, or had ever recommended a change. Back to a capsule all is well.

Outside looking in whether medication or therapy, how often do we see or essentially say - here is ‘your’ problem, here is ‘your’ solution, then sprinkle it with some encouraging mantra and suggest ‘just do it’.

An ever growing mountain of challenges rises with progression  - who wouldn’t need ‘a better reason’ to take or do something that at best might make you feel better than you are but less than you were. 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

contractures Multiple Sclerosis

Muscles, tendons, and ligaments operate joints; and well - dysfunction begats dysfunction often painful and even more mobility restrictive.

Why do joint contractures happen? Limited use, spasticity, muscle imbalance, and more - hey it’s Multiple Sclerosis - muscles act weird.

Ignoring contractures may be a result of not understanding and/or denial of MS progression, lack of access to resources, impairments and/or like Patti a dislike of physical therapy. … Not addressing contractures early can only lead to pain, more draconian therapy or surgery.

“Contractures represent a common but preventable source of excess disability among nursing home residents.” Contractures in Nursing Home Residents 

Undoubtedly treating contractures is more challenging in the pre-care facility era. Patti’s therapy program has evolved to a simple daily prescribed routine of wearing her “Neuroflex Technology” a couple hours each day. 

She’s even managed with her signature wild and crazy socks to make it a fashion statement. Though as pictured, Patti an obsessive ‘fidgetor’ has fidgeted the velcro all wonky – all the more benefit to regular monitoring by staff.

While MS progression has left Patti non-ambulatory, her ability through treatment to extend her legs makes all the difference in the world when I transfer her with a one person transfer technique from wheelchair to bed 4-5 nights per week, or as a prerequisite for outings.  

Yet no matter how much something is viewed positively from the outside looking in - it is wise to always remember you are not the one sitting in the wheelchair or wearing the brace.

“Loss of ambulation can be a symbolically powerful moment in the progress of disability from MS … Individuals may re-experience these emotions with each prescription of an assistive device …” Primer on Multiple Sclerosis by Barbara Grier

As a caregiver / carer, family or friends - you must continue your MS education; stay involved and supportive of treatments. In a sense you are the incentives for effort.

related entries:

knee contractures MS

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

knee contractures Multiple Sclerosis

Mobility is so archetypal I believe there is a tendency to simply ‘deal with’ restricted mobility in Multiple Sclerosis rather than try to work with it which invites increased risk of joint contracture. I have no alphabet after my name and my only evidence is our story of Patti’s Multiple Sclerosis progression and my 21+ years of caregiving.

                               

With progression of physical and cognitive symptoms of MS, falling was the clear and present danger, yet in retrospect joint contracture was an increasing stealth danger.

For example, once Patti could no longer safely transfer from her wheelchair to our car we ‘dealt with’ restricted mobility by purchasing a wheelchair accessible van. Safer yes but now Patti barely used her legs.

At her care facility assisted transferring by staff evolved from stand-up lifts to sling lifts.

Only I continued to use the one person transfer technique – the hug. It was this continuing involvement and use of the one person transfer that triggered the treatment of knee contractures.

At a recent Care Plan Review I had to smile as Patti is less than cooperative about her SoftPro Static Gel Knee Orthosis but here again in the care facility era  shifts of staff and perspectives eventually found the way that works. Patti is not a morning person and prefers to lounge / nap in bed rather than get up so staff has found that putting them on for two ‘lazy’ hours in the AM saves butting heads with her the rest of the day when therapy could conflict with anything or everything.

On the end result side of the equation, Patti’s ability to extend her legs is better than it has been in years and one person transfers critical to her outings are safer for both of us.

As is too often the case with MS, no one magic bullet addressed this symptom. It took teamwork, it took thinking outside the MS modalities of therapy box, it took my near daily involvement with the care facility era, and above all it took the mindset of ‘working with’ rather than ‘dealing with’ restricted mobility.

Related entries: 

March 2010 knee contractures Multiple Sclerosis

March 2009 knee contractures Multiple Sclerosis

October 2008 Multiple Sclerosis knee contractures

August 2008 caregiving: knee contracture

MS Society UK - Relieving tight painful joints    

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer 

fun times off the sidewalk

Long term care certainly needs a toolbox of resources such as in the upper right hand corner of this blog. Yet in reality, eventually you both are going to find yourselves where the sidewalk ends and accepting that long term care becomes more about connecting the dots between moments in time.

When playing in the snow becomes more wheelchair friendly through a gift of a Buggy Bag wheelchair lap blanket from one friend then that snowballs into a unexpected visit when another friend who happens to be driving by the park pulls over. Children of the North Wind seem to find each other.

Watching Patti laugh so hard that tears run down her face and she can barely catch her breath transcends a movie outing. To be able to quip in my best Robert Di Niro impression, “Are you ready to be the god focker?” for days afterwards and watch Patti dissolve into laughter, I could hug the writers of “Little Fockers” and of course Patti's brother for the gift of movie passes.

Sure I could discover a wheelchair smoker’s apron but when a friend sends a gift of packets and packets and packets of exotic flavored hot chocolate,  well … there is simply no place that can compete with home right now for Patti’s favorite wish for ‘a ciggie and a hot chocolate’.

Yes, and even after all this time sometimes I still stumble into awkward moments. Picking Patti up from her care facility for an outing she was still wearing her knee orthoses for MS knee contractures and fuzzy socks. Removing the orthoses while talking out loud to myself I remarked “we need to get some shoes on, in case” and paused. Realizing both how dumb my ‘in case’ was and how long the pause was extending I could only sheepishly smile up at Patti. We both laughed as Patti completed my sentence, “in case I want to kick somebody” and agreed fuzzy socks were just fine.

Moments in time are the why. And why is the keystone of caregiving.

It is not impossible to dream that where the sidewalk ends you will find a little help from your friends.

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 

knee contractures Multiple Sclerosis

A sing-a-long of “Dem Bones” may have held the clue all along to the recent mystery of intermittent pain in Patti’s thigh and hip.

“The leg bone connected to the knee bone,
The knee bone connected to the thigh bone,”

The suspected culprit is “lack of use” of Patti’s SoftPro Static Gel Knee Orthosis for treatment of Multiple Sclerosis knee contractures. The recent change in Patti’s room resulted in changes in staff that interact with her daily. Patti gladly said “no” when asked and knee orthosis use faded away.

Restoring a daily routine of wearing the knee othosis for two hours has reduced to nearly eliminated complaints of pain in thighs and hips. More extraordinary to me is how effectively Patti is again extending her legs when transferring.

Treatment for Multiple Sclerosis knee contractures takes time, effort, and commitment. MS Society UK explains it all far better than I and specific to Multiple Sclerosis in this video “to guide physiotherapists in treating those with MS with joint contractures and improve disability and pain.” Symptom Relief - Relieving tight painful joints 

It gets all the more complicated when cognitive impairment and memory loss are part of the symptoms.

Exercise and/or treatment are never easy and will always be difficult … yet also ‘connected’ just like dem bones to every other aspect of living with Multiple Sclerosis.

On the topic of exercise:
Pushing Patti 3.5 miles is NOT an everyday occurrence. Training for the annual MS Walk has become a rite of passage for us from Winter to Spring.

The terrain and exhibits of the Army Heritage Trail is a favorite training camp. Capturing Redoubt #10 is an accessible version of Rocky’s steps at the Philadelphia Museum of Arts. On the balls of my feet I muscle Patti's wheelchair up the hill, then overpower gravity and momentum on the way down. Resting at the top after half a dozen successful captures and over the screams of my leg muscles I hear Patti remark “this looks familiar”. :)


Related entries:
May 2009 knee contractures Multiple Sclerosis
Oct 2008 Multiple Sclerosis knee contractures
Aug 2008 memory loss and knee contractures

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

knee contractures Multiple Sclerosis

Knee contractures are more than a Multiple Sclerosis symptom; they affect Patti’s opportunity to participate in life.

In the wheelchair era of Multiple Sclerosis changes occur in the surrounding muscle, tendons and ligaments of the knees which make the legs stiffer to bend and straighten. Knee contractures impair transferring because legs essentially tuck up under a person rather than extending.

From a caregiver’s perspective the safer and easier transfer of Patti from her wheelchair to bed, scooter, non-accessible seating, or whatever by simply helping her to stand and pivot equals outings and involvement.

When dead lifting her is necessitated because of knee contractures not only are both of us are at risk but her world shrinks.

Patti can be a genuine b*tch (“and proud of it” in her own words) about physical therapy.

A saint of a new therapist persists with Patti and changed the modalities of therapy:

1. Ultrasound is used to deep heat muscles and tendons.
2. Legs are manually manipulated and stretched.
3. SoftPro Static Gel Knee Orthosis are applied and supported with an ottoman like cushion while Patti is still in her wheel chair.
4. A nap wearing the soft pro braces closes out the routine.

In my opinion the results have been phenomenal, seemingly setting the clock back several years when it comes to transferring.

While PT cannot last forever, the nap with ortho braces is to be written into the nursing plan. ANY nap that is written into a care plan is a plus with Multiple Sclerosis care.

Additionally occupational therapy will next evaluate Patti for modifications to her wheelchair and/or a new wheelchair to focus on improving leg extension and posture.

A plus to the care facility era is that medical care surrounds you from aides for attended activities of daily living to nursing staff to doctors visiting you to ‘down the hall’ therapy.

Please always remember that the pluses are in large part driven by YOU. You must insure that a specific Multiple Sclerosis oriented care plan is in effect. Most important of all YOU, FAMILY, AND FRIENDS must remain involved and supporting.

previous related entries:
10/21/08 Multiple Sclerosis knee contractures
08/12/08 memory loss and knee contracture


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

Multiple Sclerosis knee contractures

Patti’s MS related knee contractures have been high on my caregiving list recently. Multiple Sclerosis causes loss of movement in the legs triggering changes in the muscle, tendons and ligaments which in turn complicates bending or straightening.

After improvement following use of SoftPro Static Gel Knee Orthosis detailed in my August 11th entry, caregiving: memory loss and knee contracture , I’ve noticed a decline in her ability to extend her legs.

Recently chasing answers between shifts and staff, I learned the bottom line is that a certain patient has been most uncooperative. In a care facility staff cannot ‘force a patient against their will’, yada yada. So the knee orthosis have just been hanging out with the stuffed animals in Patti’s room.

Then I read a journal entry from another MS caregiver:

“I was turning Jeanne in bed, as I do every few hours throughout the day. … then I heard an unmistakable "crack." And although I had never heard this particular sound before, I instantly knew that her left leg had just been broken.”
MS Caregivers It Started With A Sickening Sound

Wow! Did this entry hammer home the risks?

Patti hates physical therapy. Trying to reason with her hits the brick wall of cognitive impairment. How to address the fight to keep Patti’s leg muscles, nerves, and joints functioning even though she is non-ambulatory?

Solution … Family and friends are not subject to institutional guidelines. We CAN argue with her to wear them and if need be amuse and distract her.

Patti’s parents visit a couple times a week and can get Patti to wear them when visiting. Jennifer had another excellent suggestion, why don’t I bring them home when Patti is visiting. While sitting around with her popcorn and ciggies would be an ideal time to wear them.

Let’s face it; wouldn’t some temporary squawking and cursing be better than the sickening sound of a crack?

Caregivingly Yours, Patrick Leer
website: http://www.caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: http://patrickleer.blogspot.com/

caregiving: memory loss and knee contracture

Last week included Patti’s latest Care Plan Review. Patti’s care facility schedules these sit downs every two months.

Two topics dominated conversation, is Patti’s memory/mental confusion worsening and physical therapy.

An advantage to the care facility era has been this collective comparing of notes and observations about Patti’s MS symptoms. Though when it comes to memory, I believe Patti sums it up best herself, “it sucks!”

While a MRI contrasted with a previous MRI could graphically demonstrate deterioration, what does that really tell us. “It sucks” worse?

MRI testing is an ordeal for Patti and eventually requires general anesthesia. … The patient is content with “it sucks”!

Physical therapy confronted with a most uncooperative patient, decided to try stretching her legs by splinting to address contracture. Patti now wears a SoftPro Static Gel Knee Orthosis on each knee an hour a day while napping; they hope to work this up to overnight.

When Multiple Sclerosis causes loss of movement in the legs this triggers changes in the muscle, tendons and ligaments which in turn complicates bending or straightening.

In Patti’s case this has worsened to severely impacting transferring.

When I transfer her myself, now days I have to just dead lift her up because her feet practically tuck up under her when lifted.

The other day I arrived to find three staff members PLUS a mechanical lift needed to change and dress Patti, again knee contracture the major culprit.

MS symptom relief research is rare among US Multiple Sclerosis organizations; fortunately that is not the case with the UK Multiple Sclerosis Society.

Their study “to investigate the effectiveness of stretching the knee and then positioning the leg in a splint for two hours” I believe is worth a visit to mssociety.org.uk and the 6 minute video presentation, Relieving tight painful joints.

(Some of the Scottish accents may leave Americans wondering if we speak the same language. <grin>)

Or better yet, the Care Plan Review in Patti-speak: “MS sucks! … Why are those birds so loud? … Those knee things are annoying. … When do I get a cigarette?

Caregivingly Yours, J Patrick Leer

website: www.CaregivinglyYours.com

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

musings: www.lairofcachalot.blogspot.com