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

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 celebrates its 8^th birthday next month, I’ve been a spouse caregiver longer than there has been Facebook or even Google, longer than smart phones, matter of fact - longer than either cell phones or home PCs. Telephones had cords and neighbors would leave hand written notes in the door, “going to grocery store this afternoon, call if you need something.”

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

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 we see or seem but an opportunity to sell?

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

Shouldn’t such phenomenal usage statistics be a unique opportunity for sharing and caring rather than marketing? Or am I simply naïve?

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

Yet also wondered why there are still so many caregivers? Why does Patti still have MS? Whatever happened to dreaming of things 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 than strange that the last time a disease (Polio) was defeated was before the computer age?

In a society where each day more people walk around staring into smart phones and walk right into Patti’s wheelchair, I am left wondering about the odds of hope for all that we see or seem to ever be all 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 sometimes the best thing you can do is just go have some fun.

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

With 24 accessible acres(approximately 24 football fields) under roof, I cannot think of a more wheelchair friendly outing for January. (and excellent pushing and walking exercise for me) 

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

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

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

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

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

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

Fortunately between MS fatigue and her memory loss she 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 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

Despite MS, to Spite MS

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

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

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

While Patti, who does have MS, makes skeptical sounds about a think positive snippet in one breath, laughs along with Jennifer’s take on 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 be dizzying to deal with.

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

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

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

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer