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Fighting Parkinson’s For Control

Parkinson’s wants control of us.

That’s a great lesson I first encountered reading Thomas Graboys’ magnificent autobiography of his inner life with Parkinson’s and Lewy Body Dementia,  “Life in the Balance.”

Bowels, bladder, equilibrium, balance,sleep,mood, memory, energy, intimacy.

Parkinson’s demands control of all we are and value.

Not just the Parkinson’s person is in this struggle. So are loved ones in countless ways.

The care partner might ask:

How do I engage this person who is different than before?

What about heir new mobility limitations? Their inwardness or outwardness? Their emotional disengagement? Their discomfort with showing their symptoms in public?

Their masked face? Their difficulty finding words to describe what’s happening to them? Their frustration with new limitations?

Their slowness? Their indecision? Their memory lapses? Their mood swings.? Their unpredictability in multiple ways.?

The Parkinson’s person is similarly conflicted:

How do I describe the life taken from me?

How do I adjust to a condition weakening my well-being?

How do I find common ground with my intimates who want the old me back?

What’s the new contract with them and can I meet it?

How do I live with daily changes in my condition–good days/bad days? What about on/off times with my meds?

Fighting for control, everyday and always.

Our greatest challenge.

 

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The Improv Life With Parkinson’s

Scene: Late Saturday AM at the Macon home of me — the Shuffling Editor (license plate SHFL ED) — and spouse Struby, The Great Copy Editor.

Shuffle and Great are finishing a two-hour conversation with three Parkie couples about the struggle for control of your lifeamidst Parkinson’s many curve balls.

The front door bursts open.

It’s Chuck and Shirley. “Are we late for the Pot Luck lunch?” Chuck asks, waving two bags of fried chicken.

Great and Shuffle are stunned.

Chuck and Shirley are members of the earlier PD Study/Action Group.

Well, no, they are not late for the Potluck scheduled for the followingSaturday.

“I was certain it was today,“ Chuck says.

Shirley rolls her eyes.

It’s a Parkinson’s thing, this mental confusion about dates and times.

(Another member of the first Study/Action Group appeared a day late for a breakfast meeting of Shuffle’s unrelated First Amendment Tribe (FAT) group.)

 

Twelve pieces of chicken and two beers later for the four of us, Chuck says they will return the following Saturday for the potluck

Just another day with Parkinson’s, the Great Disrupter.

Too funny!

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The Gut and Parkinson’s

An unusual type of colitis struck me in 2006. It mysteriously disappeared in 2014, the year I was diagnosed with Parkinson’s disease.

What was the connection between my Lymphocytic Colitis and PD? My physicians were mystified.

Recent research is identifying the gastrointestinal tract, as a probable starting place for PD. It’s quite an unfolding story.

Players include benign bacteria, inflammatory reaction, misfolded protein, and travel of a prion-like element from the gut to the brain along the vagus nerve.

This quite readable Scientific American article tells it well:

https://www.scientificamerican.com/article/does-parkinsons-begin-in-the-gut/

 

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Another Kind Of Perseverance

Perseverance centers a life of meaning. People with Parkinson’s know that well.

What follows is perseverance in a different realm, a gifted young athlete’s hard-fought journey to the top of his sport, lacrosse. The athlete is our youngest son, Jonathan (“JT”) Thelen, #8.

It rained sporadically Saturday night at Mustang Stadium, home of the Stevenson University lacrosse program. The place: Owings Mills, MD, a northwest exurb of Baltimore.

JT likes rain with his lacrosse, the more and the better. He’s been that way since he started playing at age 10.

It’s Stevenson against Widener (Chester, PA) for the MAC Commonwealth Championship. Winner receives an automatic bid to the NCAA D-III championship playoffs.

Also at stake is #8 JT– MAC  Offensive Player of the Year—rematched against Widener’s #41, John Ferguson– MAC DefensivePlayer of the Year.

This game is for revenge — Stevenson’s for the physical pummeling it took from Widener a week earlier. Stevenson overcame a four-goal deficit to edge Widener, 11-10 in the final regular season game for each.

Widener is by reputation aggressive, very aggressive. They were in the week-earlier game. The refs stood by as Widener’s defense repeatedly pole-axed Stevenson attackers, hitting them in the helmet and driving them to the turf.

Nonetheless,  JT had 4 goals, 1 assist.

This night, Stevenson’s blew Widener’s doors off. At half, Stevenson 6, Widener 0.

JT, #8, had 3 goals after 30 minutes. The game ended 12-6 with #8 accounting for 5 goals and 1assist.

The outplayed Widener #41 ended his game ignominiously. He was ejected for unsportsman-like conduct in the final period.

JT finished with 95 points for the season to date, a conference high and  second most ever by a player in the storied Stevenson lacrosse program.

JT is gifted at lacrosse. Academics come hard.

He struggles with ADHD.

He has worked very hard at lacrosse to become the player he is today: commanding on field; graceful and spontaneously creative; uncanny in his full field of vision; a great passer who assists teammates make goals.

Stevenson coach Paul Cantabene refers to JT “doing his thing,” sometimes with a note of criticism for his risk-taking style of play.

JT’s “thing” has propelled Stevenson to a 12-6 record, after starting 0-5 against a killer’s row of opponents and season loss of  two-thirds of the first defensive line.

Jonathan (JT) Thelen preservers with a huge heart and complete commitment to his teammates.

His mother and I could not be any prouder of his achievements than we are today.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Things I Wish I Had Heard At Diagnosis

My Davis Phinney colleague Rich Wildau shared a short and lovely piece of writing about Parkinson’s. Its title is “A Letter to My Clients: Things I wish I could have told you on the day you were diagnosed with Parkinson’s.”

The piece goes to the heart of what it means to “Live Well With Parkinson’s, the Davis Phinney charge.

Here are three points I particularly liked. The entire post is at  http://www.invigoratept.com/blog//a-letter-to-my-clients?awt_l=DeIAr&awt_m=nDT1wGzMkwN.Li

“Your Future has Not been decided for you. There will be naysayers and fear mongers, but a diagnosis of Parkinson’s is just that – a diagnosis. It’s a label for a collection of symptoms, not your prognosis or a crystal-ball prediction of what your future holds. It’s okay to believe you’ll get better, not worse, and that you’ll never need a wheelchair. This isn’t denial if this belief is paired with deliberate action on your part to improve your health and maximize your vitality. Your future is in your hands, no one else’s, and your attitude is everything.

“Start Exercising. Now. The evidence is strong – regular exercise is neuroprotective (meaning it protects your brain) and promotes neurogenesis (meaning it helps develop new connections in your brain). The buzzword is “neuroplasticity” which means your brain is always molding and changing based on what you ask it to do. So, challenge it (mentally and physically) to change it for the better. The absorption and utilization of dopamine, the neurotransmitter that is lacking in Parkinson’s, is significantly boosted with a challenging and frequent exercise regime.The bottom line: You shouldn’t miss a day of exercise in the same way you wouldn’t miss a day of taking your medication. Yes, it’s that important! If you’re not an exerciser.. well, you are now!

“Take Action Now, don’t wait. You may feel you’re “not that bad”. Your symptoms are minimal and you feel you can pretend they don’t exist and for a while, yes, you’ll be able to go on as if nothing’s ever happened. Your urge to “stay normal” in the eyes of others for as long as possible is strong– I get it. However, when it comes to Parkinson’s there is no waiting, whether you have symptoms or not. Taking immediate action to uplevel your exercise program, manage your stress, regulate your sleep cycle, and overhaul your nutrition is crucial to preserving your precious brain and is the only option. Medication will help your symptoms and DBS may reduce your tremors, but these are simply masking the dysfunctions in your system, not fixing them.Very similar to the way money compounds in your bank account – not changing your habits now will only compound your problems down the line. Starting today, put yourself first and make your health andfuture your top priority.”

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Update on Shuffling Editor’s Tampa and Macon Work

I wrote the following letter April 10 to donors to Struby’s and my Parkinson’s work in Tampa and Macon.

Dear xxx,

I write to bring you up to date on my Parkinson’s work. I thank you again for your indispensable help to the Davis Phinney Foundation and Me-Over-PD Foundation.

I work in two geographic and Parkinson communities. One is in the Northern Tampa Bay region (Hillsborough, Pinellas and Pasco counties) where Struby and I lived happily for almost 20 years.

The second is Macon, GA, where Struby and I moved in November 2017. Our new home is the splendid continuing care community, Carlyle Place.

My Tampa Parkinson’s community revolves around eight Parkies and their care partners in an unusual support group, the Parkinson’s Disease Action Group (PDAG). I describe it this way in the mission statement:

“No accountability organization or system exists for strongly aspirational and persevering Parkies. We have created one, the Parkinson’s Disease Action Group (PDAG)…

“Our goal is to help one another out-wit, out-flank and counter-punch this unwelcome tenant in our brains.”

PDAG’s action program is development of a groundbreaking program Me-Over-PD (MOPD) to reach newly diagnosed people with Parkinson’s. Those newly diagnosed individuals will receive — for the first time anywhere — real-time, verified, actionable, local information to assist them in navigating this mysterious malady.

The consortium comprises Tampa graduates of the PD Self Actualization Program of the Parkinson’s Foundation and faculty and students at the University of South Florida’s Zimmerman School of Advertising & Mass Communications.

The heart of MOPD is a live database of crucial resources that include neurologists specializing in mobility diseases, physical therapists, speech therapists, occupational therapists, dietitians and personal trainers.

No such database exists anywhere for the newly diagnosed Parkinson’s person and his/her general practitioner or treating neurologist.  Existing “help lines” have limited highly local information and lack resources for constant verification and updating.

The database will be used to prepare a brochure (“Road Map”) distributed through hospitals, neurology clinics, drug stores, YMCAs, agencies for the aging and doctors’ offices, to name but a few.

The target audience, for starters, is Parkinson’s sufferers in the northern Tampa Bay region.  Based upon lessons learned from the Tampa Bay rollout, MOPD intends to extend its reach by partnering with local and regional community support agencies.

We believe that newly diagnosed Parkinson’s sufferers can substantially increase the suitability of their treatments along with the quality of their lives if they are fully informed of what resources are needed, where these resources are available and how to access them.

MOPD is a Florida non-profit corporation. It received 501C(3) approval in April 2018. MOPD received a start-up contribution of $5,000 from a Detroit donor.

MOPD plans to be operational by the end of 2018. Janelle Applequist, assistant professor at the Zimmerman School is leading operations. I am president.

In Macon, Struby and I host meetings in which Parkies and care partners discuss the nuances of PD and design action steps to improve care for all patients in Middle Georgia. Those have included a lite version of MOPD resources and pursuit of additional exercise programs.

I am working with Mercer University’s medical school to improve Parkinson’s awareness among future physicians.

As of mid-2018, Georgia —  like most other states — lacks a care system for patients to enter for guidance and assistance in making necessary lifestyle improvements. Those include diet, exercise, social engagement and mental discipline.

We are working to pool the university and health-care-organization assets available in Middle Georgia and create our own ”system” of care.

Doing both would move us to the front rank of states doing well by citizens who are fighting back against their enigmatic malady.

All the best,

Gil

 

Davis Phinney Foundation, Parkinson's Disease, Parkinson's Patient Care

PD Call To Action For Middle Georgia

Middle Georgia has the assets to become a model of excellence for the care of Parkinson’s disease sufferers. Our challenge is to mesh those assets into a true system.

April is Parkinson’s Awareness Month. An important awareness point is how little information patients often receive at diagnosis.

All too frequently, they get a prescription and are told to return in three months for a follow up consultation.

That’s it.

There is little guidance offered patients on finding valid information about the dread neurological condition or their future with it. Plus, there is no PD care system for them to enter.

Patients are left alone, very alone, with their incurable but treatable malady

PD is an ultimately unknowable condition. Each case is unique to the person. Mine is mostly internal, not readily visible. (intestinal, urinary, equilibrium, balance, temperature control)

I was diagnosed in 2014, eight or more years after, in retrospect, my first symptoms appeared. It often requires destruction of 70-80% of dopamine-producing neurons in the brain for full-blown Parkinson’s to manifest itself.

Dopamine is the chemical that aids nerves communicate with muscles, a kind of body-produced WD40.

The numbers about Parkinson’s incidence are approximations. One million cases in the U.S. Seven million worldwide. Fifty thousand new cases a year in the U.S.

Second most common neurological disorder after Alzheimer’s. Incidence is forecast to double in the next 20 years.

Georgia natives and residents are particularly at risk.

Agent Orange is a known causal agent. Georgia has large numbers of veterans who served in Vietnam and were exposed to Agent Orange.

Certain agricultural chemicals are also linked to PD. We are a rural, agricultural state.

A key answer and action step is to strengthen the teamwork between family doctors who diagnose PD and expert neurologists who prescribe a treatment plan.

Equally challenging is the lack of a care system for patients to enter for guidance and assistance in making necessary lifestyle improvements. Those include diet, exercise, social engagement and mental discipline.

We can pool the university, health-care-organization and foundation assets we have in Middle Georgia and create our own ”system” of care.

Doing both would move us to the front rank of states doing well by citizens who are fighting back against their enigmatic malady.

An important marker of a state’s vigor in PD treatment, for me, is the availability of an acclaimed exercise program named Rock Steady Boxing (RSB).

Florida has 32 RSB franchises. North Carolina 19. Tennessee 9. South Carolina 7. Alabama 6.

Until recently, Georgia had but one, in northwest Atlanta. Savannah and August are recent additions.

That’s unacceptable.

Georgia could vault to the front rank by strengthening the ties between family physicians and expert neurologists and by creating an effective, after-diagnosis care system.

Let’s start doing both.

Today.

 

 

 

 

 

 

 

 

Davis Phinney Foundation, Must Read, National Parkinson's Foundation, Palliative Care, Parkinson's Disease, Parkinson's Patient Care, Uncategorized

Heads Up Middle Georgia! Your patient-care problems are revealed.

Listen Up Middle Georgia!

We have important work to do assisting people “Live Well With Their Parkinson’s.”

Thirteen Parkinson’s people — patients and care partners— recounted their journeys to students at the Mercer School of Medicine Tuesday, March 6.

Bottom line: The Thirteen got scarce information at diagnosis about the disease or their future with it. Plus, there was no PD care system for them to enter.

They were left alone, very alone, with their incurable but treatable malady

Parkinson’s is the second most prevalent neurological disease after Alzheimer’s. Incidence is forecast to double in the next 20 years.

Georgia natives and residents are particularly at risk.

Agent Orange is a known causal agent. Georgia has large numbers of veterans who served in Vietnam and were exposed to Agent Orange.

Certain agricultural chemicals are also linked to PD. We are a rural, agricultural state.

A key answer and action step is to strengthen the teamwork between family doctors who diagnose PD and expert neurologists who prescribe a treatment plan.

Equally challenging is the lack of a care system for patients to enter for guidance and assistance in making necessary lifestyle improvements. Those include diet, exercise, social engagement and mental discipline.

We can pool the university and health-care-organization assets we have in Middle Georgia and create our own ”system” of care.

Doing both would move us to the front rank of states doing well by citizens who are fighting back against their enigmatic malady.

An important marker of a state’s vigor in PD treatment is the availability of an acclaimed exercise program named Rock Steady Boxing (RSB).

Florida has 32 RSB franchises; North Carolina 19; Tennessee 9; South Carolina 7; Alabama 6.

Until recently, Georgia had but one, in northwest Atlanta. Savannah and August are recent additions.

That’s unacceptable.

Georgia could vault to the front rank by strengthening the ties between family physicians and expert neurologists and by creating an effective, after-diagnosis care “system.”

Let’s start doing both.

Today.

 

 

 

 

 

 

 

 

 

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Breakthrough on PD Patient Care

A dream for many of us is coming true in Ohio. OhioHealth, a nonprofit medical system, just announced construction of a 30,000 square foot, $12.1 million wellness center in Columbus. (Details below.)

The focus is PD and related maladies. It will be one-shop stop for “living well” necessities, such as exercise, diet and sociability.

The Me-Over-PD initiative in Tampa envisions such a center as the next step after patients are empowered with vital, local, self-care information. Similarly,  Benzi Kluger’s and Kirk Hall’s  team-based, palliative-care field test in Colorado, California and Alberta points in the same direction.

Michael Okun at the University of Florida is raising funds for a similar center at the University of Florida. Center planning is underway in Denver and Boulder, CO. David Riley’s recent InMotion center in Cleveland, Ohio, operates on similar lines. So does Parkinson’s Place in Sarasota, FL.

……………………………………………………………………………………………..

“Less than three years after opening the doors to the state-of-the-art OhioHealth Neuroscience Center at OhioHealth Riverside Methodist Hospital, OhioHealth is proud to announce plans for a first-of-its-kind neuroscience wellness center. The center will be located near the Riverside Methodist Hospital campus.

“The neuroscience wellness center will extend OhioHealth’s continuum of care for those living with neurological conditions – such as Parkinson’s, stroke, multiple sclerosis and others – by providing them with programs, equipment, education, and experts in prevention and rehabilitation to help manage their conditions and live more active lives.

‘”A patient’s care doesn’t stop when they leave the hospital or the doctor’s office,” said Dr. Janet Bay, system vice president, OhioHealth Neuroscience. ‘They need to stay active and fit in mind and body – physically, mentally, and spiritually. Our neuroscience wellness center represents our best vision for a place that can be the center of all of that for them. As leaders, locally and nationally, in the treatment of neurological conditions, our new center will impact patient’s lives in a new way and we are so very proud to be bringing it to those who will benefit from it.’

“Programs and classes at the center will include exercise, nutrition, stress reduction, yoga, caregiver support programs, and more. Additionally, it will bring already-established OhioHealth wellness programs, such as OhioHealth Delay the DiseaseOhioHealth Fore Hope, the OhioHealth MS Wellness Program, Staying Fit Following Stroke and Brain Injury and Gerlach Center for Senior Health clinics under one roof. The center will also serve as an incubator for development of new programming

‘”We have made a tremendous commitment to neuroscience in the communities we serve,” said Dave Blom, president and CEO of OhioHealth. “We have a passion for giving patients and their families the very best healthcare, no matter where they are on that journey. We believe wellness is a significant part of that journey and that the new neuroscience wellness center will be a big step forward in that area.’

“Preliminary plans call for a 30,000 square-foot facility including, but not limited to;

  • Two large multipurpose fitness studios that can be split for simultaneous classes
  • Indoor cycling (spinning) studio and indoor walking trail
  • John J. Gerlach Center clinic programs and support services specifically for older adults
  • An outdoor program area located immediately outside of the building

The new facility will cost $12.1 million to design and build with $10 million of that coming from the Building Strength for Life campaign led by the OhioHealth Foundation. The generous McConnell Foundation gift of $6 million represents 60 percent of that goal. Construction is expected to be complete in the next two years.

‘”We are pleased to be involved in such a critical and groundbreaking approach to wellness care in the field of neuroscience,’ said John P. McConnell, Chairman and CEO of Worthington Industries. “Our family believes in the vision of OhioHealth in providing exceptional care in the communities they serve. The neuroscience wellness center is another example of their leadership on healthcare issues that are important to all of us.’

“The McConnell family’s long-standing philanthropic partnership with OhioHealth spans nearly 30 years. Generous gifts from the McConnell Foundation, which now total more than $25 million dollars, have been instrumental in leading and advancing medical care innovations at OhioHealth. This latest gift will continue to ensure the OhioHealth neuroscience mission of delaying the progression of disease, improving outcomes, and reducing costs.

‘“We are filled with gratitude to the McConnell family for this extraordinary gift to support our neuroscience wellness center and the people who will benefit from the services,” said Karen Morrison, president of the OhioHealth Foundation and senior vice president, OhioHealth. ‘“We are inspired by the passion, dedication and generosity of John P. McConnell’s unwavering commitment to OhioHealth and to this community.’”

 

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Stress: PD’s Best Friend

I came across a cool column I share on the stress bugaboo.

Also, my new Georgia license late just arrived. SHFL ED.

Giggles!

When Living With Parkinson’s, Ax the Stress

When Living With Parkinson’s, Ax the Stress

Sherri Journeying Through

Stressed. This is what my thesaurus had to say: “To ‘stress’ is to emphasize.” Emphasize what? The fact that your life is out of control? The fact that you’re not handling things well?

Being “under stress” means that these two elements are wearing on you — being out of control and not handling things well. However, there is still some control. A minute amount, but then, are we ever really in control?

Perhaps something, somewhere, somehow, in some way is insisting on driving you crazy. More than likely it is we, ourselves, who are driving “us” crazy. We are the ones who insist on allowing something or someone, in some way, to get to us, to rob our joy.

For example, as I write this my husband and I are driving on Interstate 10, going from Phoenix to Los Angeles. We are going the speed limit at 75 mph. A Chevy Blazer with a roof rack piled high with camping gear and a back window with a sticker that says, “Desert Center Fellowship,” plus a license plate that reads “PASTOR,” zooms past. It is definitely exceeding the speed limit of 75 mph. This is after he has been tailgating us, we who are behind a semi-truck that is exceeding his speed limit. The first semi-truck pulls in front of another semi that is passing us on the right, then quickly passes the one in front of us and then pulls in front of him, cuts over to the left of him, and pulls in front of another car. It is moments such as this that drivers tend to get stressed.

I continue writing as my husband continues to drive. Approximately 10 minutes later, from out of nowhere, the Pastor of Desert Center Fellowship zooms by us once more, and once more, he swerves to the right to pass a car that is dawdling down I-10 at the much-too-slow speed of at least 85 mph.

Now, many drivers I know would be stressed by now. They are not merely under stress. They are stressing out big time, and at this point, it is their choice. At times like these in our lives, we allow stress to rob our joy. We allow situations and other people to insist on their agendas, hammer home their opinions, spotlight on the negative, underline our failures, dwell on our mistakes.

You know what I’ve learned that was refreshingly reminded to me today? People like “Pastor Desert Center Fellowship” don’t cause my stress. I do. Things like being cut off in traffic don’t cause my stress. I do. Situations like dirty dishes in the sink left for me to do don’t cause my stress. I do. I allow myself to “climb under” this stuff  — because I choose to. I choose to let it get the best of me and drag me down so that I fit under it, let it cover me, and dwell fitfully within it as it wraps its not-so-warm, fuzzy blanket around me. I have allowed it to define my moment, my day. I have become the “s” word: Stressed out.

I am so grateful God has not given up on me, that He still finds me teachable. I am grateful I have learned not to always give in to stress, as was once so easy to do. Now I am much quicker to recognize the hold it strives to have on me. If I allow it to cover me, if I climb under it, before I know it, I am not just “under” stress; it has begun to consume me, define me, highlight my life, insist on having its way, and ultimately, I have allowed it to steal my joy.

Disease. Loss. Pain. Financial burdens. Relationships. All things in life that can create stress, if we allow them. We cannot control everything, if anything. Stress allows us to deal with this “life” — this disease — ineffectively. What is effective? I have found two things to be most effective for me: Forgiveness and thankfulness.

I had a current, ongoing situation that had been stressful for me. After talking to a good friend recently, I realized I hadn’t forgiven the person with whom I had been struggling. I’d allowed the pain to grow because I’d sought control instead of forgiveness. I had allowed the situation to highly frustrate me, and at times, rob my state of mind, my joy.

Forgiveness! Do they deserve it? Not my call. Do I need to do it? You bet. By forgiving, I can find things in that situation for which to give thanks, and by doing that, my focus returns to its proper place — on God being in control. When the right perspective is there, joy overflows.

Is forgiveness easy? No way. Is it necessary? For me, yes. I don’t like the word that starts with an “s” and if I refuse to forgive, refuse to see the hard things in life to be thankful for, that “s” word takes control, consumes my joy, and I am nothing more than … stressed.

That isn’t where I choose to live. Joy is a much better state of mind and with all that a person who has  Parkinson’s has to deal with, don’t you think that’s a better place to be? Living with joy and axing the stress in your life?

Sherri was diagnosed with Young Onset Parkinson’s disease over fifteen years ago. She can be found working in her garden, going for walks, taking pictures, or reading books to her three favorite grandkids.