when more than homecare is needed Multiple Sclerosis

From Multiple Sclerosis Foundation’s MS Focus Magazine, Winter 2012 (pages 43-45):

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pg 44

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pg 45

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

dental health Multiple Sclerosis

Multiple Sclerosis does not make dental care easy.

Long story made short Patti was less than cooperative at her last failed checkup. Fortunately there is a positive end to this story.

Believe it or not there’s at least one dentist who prefers the freedom of not having an office practice, traveling between care facilities and nursing homes.

Rather than just leave it alone he called me with a plan.

What if … he revisited after Patti had been given a dosage of Ativan/Lorazepam beforehand, the proverbial “chill pill”. Adding me to the mix could improve success because in the care facility era “no means no” for professionals, only family/POA can ‘persuade’ a patient.

Arriving I transferred Patti to a geri-chair, a recliner on wheels.  I was blown away by the mobile dentist office set up, it had everything except musak.  (Rummaging about I found a boom box and a CD of new age music and fixed that.)

Patti (under the influence of Ativan) was a model patient and the dentist was a godsend. Patti’s dentist prefers the life of mobile dentistry. He loves its freedom and its focus on patients.

Patti’s teeth were cleaned, polished, and cavities filled. Only the high speed drill which sprayed water seemed to agitate her. I quipped it was just the tooth fairies waterboarding her. “Little bastards” she mumbled and with a smile her calm returned.

Afterwards, we talked about new solutions because status quo is not working. Apparently an electric toothbrush is a win-win because in a pinch it can be used simply with water, eliminating the whole rinse and spit challenge. Regardless of MS and all its challenges, dental care cannot be trivialized. Brushing teeth is social behavior. Visiting or outings should include teeth brushing rather than depend on staff, remember staff can be told ‘no I don’t want to’. Thinking outside the box is a must.

Since it was 60˚F (15.6˚C) afternoon in February, and the geri-chair fit in our wheelchair accessible van, I took Patti to the park in her rolling recliner for a reward before a well-deserved afternoon nap.  

Related previous entries:

a trip to the dentist (Jan 2006)

teeth brushing smiles (Feb 2009)

dental care Multiple Sclerosis (May 2010)

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Chang Shan vs Multiple Sclerosis

"A new study suggests the Chinese herb known as Chang Shan selectively weakens the runaway immune response implicated in many autoimmune disorders, such as rheumatoid arthritis, multiple sclerosis, and psoriasis."

As we begin this 27^th year since Patti’s diagnosis of MS, I wish I could embrace hope with the enthusiasm of a quarter century ago.

Now before everyone goes digging up neighborhoods, nurseries, and botanical gardens for roots of blue evergreen hydrangea let’s take a moment.

At the risk of oversimplifying … Our healthy immune system depends on T Cells. ‘Rogue’ T Cells have long been considered a culprit with MS. ‘Rogue’ T Cells cannot distinguish friend from foe and target the body’s own myelin as if it were a bacteria or virus. Finding a way to suppress the ‘rogue T Cells’ without suppressing all T Cells has been the challenge.   

Back in July 2009 …

Compound from Medicinal Herb Thwarts Turncoat Immune Cells “A small molecule (halofuginone) better known for its anti-malarial properties can block the birth of the immune cells involved in autoimmune diseases without blocking crucial infection-fighting cells”, report Harvard Medical and Dental School researchers.

Now in Feb 2012 after peer review and further retesting ...

“We recently demonstrated that halofuginone (HF) …inhibits the development of TH17-driven autoimmunity in a mouse model of multiple sclerosis” Halofuginone and other febrifugine derivatives inhibit prolyl-tRNA synthetase

With publication in Feb. 2012 Nature Chemical Biology, associated media and more are picking up the story.

Again at the risk of oversimplification, Chang Shan is the herbal form, Halofuginone is the synthetic.

Interestingly back in 2003, SunCatcher Herbs, developed Sclero-Eze, a herbal supplement that uses Chang Shan as a base. Their website announces “may Treat - Rheumatoid Arthritis - Scleroderma - Lupus - M.S.”

From a quarter century of experience I can share that breaking research on mice can take a decade before availability to humans, if ever. On the other hand while the herb is available it was not the herb that was tested.

However, no one can imagine another’s hope.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Valentine’s Day Memories: good, bad, and ugly

As a caregiver spouse Valentine’s Day is at best a one sided exercise. Yet marketing drives society and well look around the annual emotional ‘carpet bombing’ has begun.

Progression of Multiple Sclerosis symptoms both physical and cognitive long ago eliminated ever receiving any Valentine’s Day gift, gesture or even remembrance.  It’s such a ‘healthy couple only’ media blitz it only leaves me feeling more isolated and alone than usual. The caregiver perspective is expressed well in “Valentine's Day - Fleeting Fluff” by Terri Corcoran.

Maybe it always was illusion? As a college student I double dated with a friend on Valentine’s Day. Splurging on the memorable kind of restaurant it seemed a night and place framed for romantic love. Until my buddy decided to seize the moment to announce he was breaking up with his girlfriend.  

Also long ago in my years on the road I knew someone who falling head over heels in love with a woman drove hours with that seething passion and imagination of romantics to surprise her and ask her to “be mine” forever on Valentine’s Day. She instead surprised him, having settled down with her ‘true love’ and asked him to leave her alone before he ever opened his mouth.

Maybe romantic love isn’t an illusion but a delusion?

Valentine’s Day also is not really even a holiday. Companies, schools, and governments go about business as usual. My Mom’s body was cremated on Feb 14^th. There’s a figurative coffin nail in Valentine’s Day memories.

In all fairness there are some good memories. My Aunt and Uncle were married on Valentine’s Day. They celebrated over 60 wedding anniversaries on Valentine’s Day before death interupted the romance.

For almost two decades I’ve been involved with a Special Olympics Valentine’s dance for high school age special needs students unlikely to experience traditional school dances. no diagnosis on the dance floor

And for whatever reason snow storms and blizzards enjoy visiting around Valentine’s Day and I could not be happier. Snow is nature’s “hug me”!

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

care facility cabin fever

“loneliness, helplessness and boredom are the three plagues of long-term care”  Eden Alternative

“Don seemed to me to be going downhill, and a couple of the staff also suggested that he was deteriorating. …Then the head nurse came up with a different theory and a different solution … Don’s got cabin fever, that’s all. … Here’s the thing. …  It only took a day or two, and Don was back to himself again.”  Multiple Sclerosis Carer: Stir Crazy

Recently I found myself in a similar situation with Patti and dinner. She was ‘reportedly’ finishing less of her meals and just wanted to go to bed. I began moving up my arrival time to be there to help with dinner. 

One such meal stands out. Arriving I saw Patti had finished her entre and overheard her yucking the aide’s offer of her fruit cup or potato soup and that she ‘just wanted to go to bed’.

Noticing the fruit cup was diced pears and peaches, two of Patti’s favorites – I rephrased the question ‘would you like some cut up pears and peaches’ with a totally different response. Of course, how could the aide know Patti’s favorites?

Soup is a function of temperature more than taste to Patti. Hot is not appealing. Hey we’re talking about cream of potato soup here. The cooler it gets, the more pretentious it becomes. Rolling out my best bad French accent, Patti enjoyed her ‘vichyssoise’ assisted by zee crazy french waiter.

Instead of another unfinished meal, there was not a crumb left nor did Patti 'just want to go to bed'.

“… increased family involvement is positive and leads to quality of life and quality of care for residents…” National Institutes of Health Family Involvement in Residential Long-Term Care

If the testimonials of two Multiple Sclerosis spouse caregivers, a long term care non-profit, and NIH is not enough - then consider that even circling sharks pause to stress the importance of family involvement. Boston nursing home abuse attorney Bernard J. Hamill, “ensuring safe care is continued family involvement. There is really no substitute for this.”

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Ouch! Degenerative Bone Disease and Multiple Sclerosis

Ouch moments intermittently dominated this past week. While Patti can never actually tell me where or what hurts, I observed each ouch always somehow involved the use of her left arm either removing her coat or transferring her from wheelchair to bed. I say intermittent because out of 8 coat removals only 3 were ouch moments while two out of four transfers to bed involved an ouch. Looking for common denominators, each transfer ouch was preceded by a coat removal ouch, yet each coat removal ouch was not followed by a transfer ouch.

Ouch by deduction might even frustrate Sherlock Holmes. No it’s never “quite elementary” when asking Patti is unfortunately confounded by her Multiple Sclerosis symptoms of short term memory loss and cognitive impairment.

With anywhere between half to two-thirds of those diagnosed with MS reporting pain as a symptom it would be easy to assume this is about MS. Except that Patti has never in 25 years reported pain associated with MS.

In this situation the care facility era is a godsend. While Patti fell off to sleep I stopped to discuss my observations with the nursing staff. They ordered an x-ray of her left shoulder for the next day. X-ray machines come to you in the care facility era easier than delivery pizza in the home care era. The next afternoon I was looking at the radiologist’s report as I stopped by to pick Patti up for an outing.

On the good side the x-ray found no fracture or break, on the negative it did reveal 'mild degenerative bone disease'.

Degenerative bone disease is commonly known as degenerative osteoarthritis. Allegedly this affects more than 20 million Americans. It’s about the breakdown and loss of the cartilage of the joints which when working properly acts like a shock absorber helping the bones glide over one another. When bones begin to rub each other – ‘ouch’ may be an understatement.

Tylenol for pain and application/massage of a bengay type ointment will be the immediate treatment. Outings and such need not be compromised just adjusted to ouchless by minimizing left shoulder rotation. 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

exercise, fitness, caregiving for Multiple Sclerosis

Across the years of caregiving, I’d guestimate I’ve pushed Patti’s wheelchairs at least 5,000 miles (8,000 kilometers).

Multiple Sclerosis caregiving is physical caregiving. Sure the pushing might sound dramatic but the heavy lifting is incalculable beginning with the first time I helped Patti off the floor after a fall to the non-ambulatory stage and one person unassisted transfers.

Not only have I had hernia surgery but aches and pains so common I joked that Bengay was eau de cologne for caregivers.  A ‘back brace support weight lifting belt’ and/or large pain relieving patches were too often simply part of getting dressed.

That is until a year and a half ago when I first discovered Planet Fitness, “Caregivingly Yours: are you fit to care / exercise”

“Exercise recommendations for someone caring for a loved one are no different than for anyone else. 30 to 40 minutes of moderately intense exercise three or more times a week.”

“Caregivers responsible for lifting loved one’s in and out of bed or chairs require a strong core.”

Hey! 90% of the time I’ve been a caregiver I viewed exercise as some hobby for the spandex clad bourgeoisie - some of us just learn slower.

Using the Planet Fitness 30 Minute circuit workout (a series of stations with lever-and-pulley machines for each major muscle group) I’ve not only been able to strengthen the specific muscles used to transfer and lift Patti but build better muscle harmony and no longer need the ointments and braces.

To train the ‘pushing engine’ it takes aerobic/cardio exercise and their variety of choices and bells and whistles is most appealing. When the same thing gets boring, I lose interest. These days I start with one mile on a treadmill with maximum incline to best replicate pushing a wheelchair up a grade and another mile on an elliptical or bike for cardio endurance.

As sweat stains your shirt you only need ask yourself - how many people do you know who will step in to push the person you care for up the hills and across the years?

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer