Parkinson’s National Family Caregivers Month

Do you know a family living with Parkinson's Disease?

 

November is highlighted to build awareness of people with Parkinson’s, both those who endure the disease and those who care for them. This is the month to visibly support family and friends who rally around a loved one with PD. This group includes partners who help with medical appointments or personal care such as dressing or bathing. It also includes those in our extended networks — family, neighbors, co-workers, health professionals — who provide support, making them part of the caregiving network.

It’s important to take time out to talk about their contributions and give them your support.

Parkinson's Disease Foundation in their latest newsletter tells the story of Dr. Maria De Leon who has a unique perspective on caring in Parkinson's disease. In fact, she first cared for her grandmother with Parkinson's disease, then for her patients as a movement disorders neurologist, and now lives with Parkinson's disease herself.

 

The family of Greg Hardoby from Rahway, NJ, have all pitched in since his diagnosis with Parkinson's disease. Mr. Hardoby is himself no stranger to supporting a loved one with PD -- his late grandmother lived with Parkinson's disease. Recently, when he wanted to make a difference by fundraising for PDF, his wife Maria, and their children all helped to put together a golf outing they called Putt Fore Parkinson's and raised more than $5,000. 

 

The family was featured in the NJ Suburban News on September 18, 2014.

 

"Hardoby, who lives with Parkinson's, his wife Maria and their children Ann Marie and Alex, organized the event as part of the PDF Champions program, the grassroots fundraising arm of the Parkinson's Disease Foundation. The golf outing featured several contests such as longest drive and closest to the pin, as well as a pig roast and awards banquet in the evening. The family hopes to make the golf outing an annual event."

 

Few of us have the time or energy to organize such an event, but this month simply make a phone call to your PD friends, take a caregiver out for a latte, send an email, add this link to your Facebook page as tribute to your friends, smile encouragement in the grocery store to a stranger walking with a cane and a caregiver. So simple. So appreciated.

 

 

 

 

 

 

www.pdf.org

 

DO YOU KNOW HOW IGNORANCE CAN REGULATE A CULTURE?

At Home. A short history of private life.  by Bill Bryson

Bill Bryson and his family live in a Victorian vicarage in England and one day he began to consider how very little he knew about the ordinary things of life as found in that comfortable home. To remedy this, he formed the idea of journeying about his house from room to room to “write a history of the world without leaving home.” The bathroom provides the occasion for the history of hygiene, the bedroom for an account of sex, death, and sleep, the kitchen for a discussion of nutrition and the spice trade, and so on, showing how each has figured in the evolution of private life. From architecture to electricity, from food preservation to epidemics, from crinolines to the cotton gin—and the brilliant, creative and often eccentric talents behind them—Bryson demonstrates that whatever happens in the world ends up in our houses.

For example, in 1983 a vine owner observed leaves “covered with galls from which sprang insects of a kind he had not seen before.” He was the “first in Europe to suffer from an infestation of grape phylloxera, a tiny aphid, that would shortly devastate the European wine industry.”  The result in France in 1952 was wine growers in southern France finding their vines dying. “Because the insects infested the roots, the first sign of mortal illness was the first sign of anything. Farmers couldn’t dig up the roots to see if aphids were present without killing the vines, so they just had to wait and hope. Forty percent of France’s vines were killed in fifteen years. Eighty percent were ‘reconstituted’ through the grafting on of American roots.”  “It is thanks to American roots that French wines still exist.”

And here is an example of the delightful melding of historical facts by Mr. Bryson: “Phylloxera aphids from the New World had almost certainly reached Europe before, but would have arrived as little corpses, unable to survive the long sea voyage. The introduction of fast steamships at sea and even faster trains on land meant that the little pests could arrive refreshed and ready to conquer new territory.”

To further quote the back cover of my large print library copy:  Bryson’s wit and sheer prose fluency make At Home one of the most entertaining books about private life ever written.

 

 

GOALS AND PATTERNS

 

October has been an excellent month to review my year’s goals and evaluate changes needed to set quality but realistic goals for next year. Since reading Boundaries by Doctors John Townsend and Henry Cloud I have been a fan of their website and counseling materials. In Beyond Boundaries Dr. Townsend, begins Chapter 12, “Great relationships are fulfilling.  Great relationships involve risk.  You can’t have the first without the second.”

In the following blog written for Dave Ramsey, Dr. Townsend explores Two Areas of Life that Set Successful People Apart.

http://www.daveramsey.com/blog/two-areas-life-set-successful-people-apart

 

The Dementia Umbrella

October and November are months when fund raising for Alzheimer’s disease sponsors marathon walks. What these groups do not identify is the research tact they are supporting. And gaining research money is big.

FYI, I teach certification training in Mental Health and Dementia for WA DSHS. In our Dementia workbook the third page shows a grey on grey umbrella representing the broad diagnosis of Dementia.  Under this umbrella are the more specific definitions of symptoms: Alzheimer’s, Pick’s Disease, Vascular, Huntington’s, Parkinson’s, Lewy Body, to name a few.

Observing the residents who come to our home, while it does not get the big name recognition, I have conjectured that Vascular Dementia is as common as Alzheimer’s. You may be more familiar with the term “hardening of the arteries.” The following link ties brain and heart health together.  The cause of Alzheimer’s is at least 20% genetic. Vascular can be avoided by conscious, life-long health habits.

Check it out.

http://www.healthcentral.com/alzheimers/c/62/171761/vascular-dementia-specialist/

 

 

PARTIAL TRUTHS

Emily Dickinson may not be your cup of tea due to her anachronistic capitalizations and frequent dashes. But her poem, The Brain, suggests that our thinking may be rooted in a passionless track unless we allow splinters of new thought to wash in. And then we may be hard pressed to regain our previous certainty.  Fear of new thoughts and emotions are what marches censorship up and down Main Street.

Emily Dickinson, #556

The Brain, within its Groove
Runs evenly--and true--
But let a Splinter swerve--
'Twere easier for You--

To put a Current back--
When Floods have slit the Hills--
And scooped a Turnpike for Themselves--
And trodden out the Mills--

The essay, Different Rules Apply by Matt Zoller Seitz, may be such a splinter that will move you to rebuild your emotional structures in a place where floods will not trod out your mill. If there is a "flood" where do you re-build your business? Might you consider a new source of energy? Do you dare think outside the box?

Jesus continually applied mercy as he walked the ancient turnpikes through villages and past country hovels, showing concern for the poor, for women and children: the least of these. The least we can do is step off our path for a moment to consider the idea Seitz offers in his painful and embarrassing story.



  

What Mortals Be

Is it dreamed or dreamt?

Whichever, when the phone rings at 4:45 AM with the same IRS scam recording we have been subjected to all week, cerebral word choice gets trampled underfoot by reptilian brain stem reaction.

When we are awakened by a resident who wobbles out of bed at 2:00 AM in agitated confusion, that is bad news. The good news is that prescribed meds and an attentive caregiver can re-tuck her/him under the bed covers, probably for the duration until the phone rings in the office almost three solid sleeping hours later.

“Tragedy has serious and logical consequences. Cause and effect. Comedy usually doesn’t. You throw a person off a tall building in a comedy, he bounces. You throw someone off a building in a tragedy, don’t wait for the bounce.”  Robin Hemley

Mortality being what it is, we had best find humor in the illogic of it all or we’ll burn out as kindling for tragedy. That would be disastrous.

I no longer desire to push the foreign accent speaking scammer off a tall building somewhere in LA where he sleeps. However, the good news is that the well articulated English speaking female on the recorded message left a phone number. When we returned the call at 4:47 AM we “spoke” to a groggy male person. Yes, I have his number and can use it at all hours whenever whoever in our Home wakes in distress.

That is mortal humor and I am laughing.

Commas and hyphens were omitted intentionally. Sue me. It’s 5:00 AM.