Ouch! Degenerative Bone Disease and Multiple Sclerosis

Ouch moments intermittently dominated this past week. While Patti cannever actually tell me where or what hurts, I observed each ouch always somehowinvolved the use of her left arm either removing her coat or transferring herfrom wheelchair to bed. I say intermittent because out of 8 coat removals only3 were ouch moments while two out of four transfers to bed involved an ouch. Lookingfor 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’snever “quite elementary” when asking Patti is unfortunately confounded by herMultiple Sclerosis symptoms of short term memory loss and cognitive impairment.

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

In this situation the care facility era is a godsend. While Pattifell 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 machinescome to you in the care facility era easier than delivery pizza in the homecare era. The next afternoon I was looking at the radiologist’s report as Istopped by to pick Patti up for an outing.

On the good side the x-ray found no fracture or break, on thenegative 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’sabout the breakdown and loss of the cartilage of the joints which when workingproperly acts like a shock absorber helping the bones glide over one another. Whenbones begin to rub each other – ‘ouch’ may be an understatement.

Tylenol for pain and application/massage of a bengay type ointmentwill be the immediate treatment. Outings and such need not be compromised just adjustedto 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’vepushed Patti’s wheelchairs at least 5,000 miles (8,000 kilometers).

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

Not only have I had hernia surgery but achesand pains so common I joked that Bengay was eau de cologne forcaregivers.  A ‘back brace support weightlifting belt’ and/or large pain relieving patches were too often simply part ofgetting dressed.

That is until a year and a half ago when I firstdiscovered 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 ofmoderately intense exercise three or more times a week.”

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

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

Using the Planet Fitness 30 Minute circuitworkout (a series of stations with lever-and-pulley machines for each majormuscle group) I’ve not only been able to strengthen the specific muscles usedto 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/cardioexercise 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 onemile on a treadmill with maximum incline to best replicate pushing a wheelchairup a grade and another mile on an elliptical or bike for cardio endurance.

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

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

91% of caregivers use Facebook

“91% of caregivers are using Facebook another 29% are using blogging sites …”

OMG I’m a tribal elder! While Facebook celebratesits 8^th birthday next month, I’ve been a spouse caregiver longerthan there has been Facebook or even Google, longer than smart phones, matterof fact - longer than either cell phones or home PCs. Telephones had cords andneighbors would leave hand written notes in the door, “going to grocery storethis afternoon, call if you need something.”

“… This provides a unique opportunity for marketers trying to sell healthcare products and services generally targeted tocaregivers or for those trying to build goodwill from a Pharma corporatestandpoint.” 

A century and a half ago Edgar Alan Poe asked,“Is all that we see or seem but a dream within a dream?” – Is today all that wesee or seem but an opportunity to sell?

That’s a helluva a lot of people reaching outinto cyberspace to try and find others like themselves, or trying to juggle theshrinking time for research or simply staying in touch as caregiving isolates.

Shouldn’t such phenomenal usage statistics be aunique opportunity for sharing and caring rather than marketing? Or am I simplynaïve?

Through 22 years of spouse caregiving andjuggling basically single parenting I’ve marveled in awe of the technologicaland scientific advancements of those two decades.

Yet also wondered why there are still so manycaregivers? Why does Patti still have MS? Whatever happened to dreaming ofthings that never were, and asking why not? What if … we focused instead on ‘reducing’the need for and cost of Big Pharma, health care products and services?

Am I the only one who finds it more thanstrange that the last time a disease (Polio) was defeated was before thecomputer age?

In a society where each day more people walkaround staring into smart phones and walk right into Patti’s wheelchair, I amleft wondering about the odds of hope for all that we see or seem to ever beall it could be. 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

where sheep wear spandex / an MS outing

Whether care giving or needing care sometimesthe best thing you can do is just go have some fun.

Laughing while spandex wearing sheep tried toeat Patti’s wheelchair we began our visit to the 2012 Pennsylvania Farm Show.

With 24 accessible acres(approximately 24 football fields) under roof, I cannotthink of a more wheelchair friendly outing for January. (and excellent pushing and walking exercise for me) 

Enjoying two creamy chocolate milk shakes fromPA Dairyman’s Association in search of the butter sculpture we decidedto watch some honeybees in a glass observation hive at an exhibit by PABeekeepers Association. Soon we found ourselves in a conversation with abeekeeper about bee stings and medicine. While most visitors took a step backfrom the weird people talking about stinging themselves, several lingered,listened, and asked questions in a spontaneous discussion about Patti’seventually unsuccessful two years of Bee Venom Therapy for Multiple Sclerosis and the beekeeperwho had found genuine success for his Rheumatoid Arthritis through apiatherapy.

It’s hard to miss 1,000 lbs (454 kg) of butter and weeventually found the sculpture. After the week long farm show the sculpture isgiven to a selected dairy farm where it is converted into electricity.

After a couple hours of checking out and oftenvisiting up close and personal certainly every farm animal and crop in ourimagination – well, we were hungry … hey, the theme was “from the farm gate tothe dinner plate.”

Heading to the food court area we decided onLamb Stew from PA Livestock Association with frozen maple yogurt topped withmaple syrup for dessert from PA Maple Syrup Producers.

Lamb stew and frozen yogurt could not have beenmore dysphagia friendly and feeding Patti was no problem in the crowd ofhumanity, over 50,000 attend each day. Most people are shoving one thing oranother in each other’s mouth anyway under the ‘try this’ principle of fine farmshow dining.

Happy and fed Patti was ready for a longwinter’s nap.

Fortunately between MS fatigue and her memory lossshe would not have to fret about counting spandex clad sheep. 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

please take your medicine / MS and chronic illness

“Please take yourmedicine?


50% of chronically ill people need a better reason

People hate medicines. It’s a fact of life. As many as 50% ofpeople 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 topglobal marketing companies Euro RSCG (representing Big Pharma giants Novartis,Merck, Sanofi, and more) gets it …

… yet between Multiple Sclerosis symptoms ofmemory loss and mental confusion, Patti especially when prescribed something ortreated with something she does not like - often tinkers with the best laidplans of mice and caring people.

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

Or recently one of her bedtime medications waschanged from a capsule to liquid. Yet liquid was so foul tasting Patti gaggedor choked reaching a point of refusing to take. Intervening as her POA Idiscovered 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 ortherapy, how often do we see or essentially say - here is ‘your’ problem, hereis ‘your’ solution, then sprinkle it with some encouraging mantra and suggest ‘justdo it’.

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

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Despite MS, to Spite MS

How unique is this book? In the forwardJennifer Digman shares her research that there are 2,100 books on MultipleSclerosis but only 5 about Multiple Sclerosis love stories.

How unique was reading this book? Because of MSsymptoms Patti cannot read nor can she remember in the short term which in turnaffects attention span. Reading it to her pieces of chapters at a time over theholidays was beyond interesting, at times outside my imagination.

At one moment I’m reading to Patti about DanDigman who transfers his wife Jennifer from her wheelchair with the same oneperson unassisted transfer as I use for Patti except the guy has MS. Not onlyhas MS but runs an 8K race in 43 minutes – damn, this guy is in far bettershape than me and I do not have MS.

While Patti, who does have MS, makes skeptical soundsabout a think positive snippet in one breath, laughs along with Jennifer’s takeon something from their shared wheelchair view perspective in the next breath,and then abruptly decides she just wants to go to bed. MS attention span can bedizzying to deal with.

Spacing chapters are haiku poems by Judy Williams who also has MS. These capture Patti’s attention causing spontaneous commentsand observations, a couple times leaving me to see the poem differently.

If ever I doubted it, this experience ofreading “Despite LS, to Spite MS” with Patti has proven that Multiple Sclerosisis less a diagnosis and more a collection of Multiple Stories.

And, Now, We Pause for a Brief CommercialMessage . . . Click “Despite MS, to Spite MS” to order.  A portion of the proceeds will benefit the National Multiple Sclerosis Society andCamp Courageous.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer