Caring for Those with Invisible Wounds

Military CaregiverFollowing is Sherri Snelling’s article that was originally published on Huff Post 50 about the caregivers of veterans with PTSD and TBI – the homefront heroes of those with invisible wounds.

 

Caring for Those Heroes with Invisible Wounds

Music, Military Service and Multiple Sclerosis – How the Osmonds Triumph

Alan R. Osmond - California National Guard

Alan R. Osmond – California National Guard

Today, as we honor the military men and women who have paid the ultimate sacrifice on the altar of freedom for our country, I honor one veteran who has led his family on a triumphant journey through the music industry and the battle against multiple sclerosis.  I was privileged to interview both Alan and David Osmond – father and son duo of the famous Osmond clan about their inspirational story where both men are triumphing over this debilitating chronic illness. Following is an excerpt of that interview from my book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

 

 

 

 

 

 

 

 

The Show Goes On for the Osmonds

They say lightning never strikes twice in the same place yet this is exactly what happened to Alan Osmond and his son David Osmond of the famous entertainment family.  This lightning came in two forms:  great musical and performing talent as well as a gift for songwriting but also something less glamorous:  a diagnosis of the autoimmune disease multiple sclerosis (MS).

Alan and David Osmond

Alan and David Osmond

Growing up Osmond means you know how to be at the pinnacle of the entertainment world –you sing, you dance and no matter what the show must go on.  This was no problem for David Osmond, one of eight sons born to Alan, the oldest of the famous Osmond Brothers who shot to fame along with Donny, Merrill, Wayne and Jay in the 1960s-70s (Marie and Jimmy came later).  As a torchbearer for the Osmond dynasty, David, age 32, has a successful solo career, still performs as the lead singer for the Osmonds – Second Generation, is hosting a new TV music competition reality series and participated in the eighth season of American Idol.

But, imagine if one day you woke up and found you could not walk, you could not hold a guitar, you could not sing because the pain in your chest and paralysis in your body reached from your toes to your diaphragm making it hard to breathe.  This was what David Osmond faced in 2005 when he was diagnosed with multiple sclerosis (MS) and went from a promising entertainment career into a wheelchair while still in his 20s.  Remarkably, it was the same diagnosis his father, Alan, had been given almost 20 years earlier when he was in his late 30s.  What makes this story so inspiring is that for the Osmond family, whose longevity in show business is legendary, both Alan and David are not only living with MS today, they are actually thriving.

Multiple sclerosis, which affects 2.5 million people worldwide, is an autoimmune disease that attacks the central nervous system and for which there is no cure.  Essentially, scars and lesions cause interference with the transmission of signals to the brain and spinal cord that then cause the unpredictable and often debilitating symptoms that MS patients experience such as numbness, tingling and searing pain in the extremities, periods of partial or full blindness, loss of sensory function such as taste or smell and even full paralysis.

While researchers feel there may be genetic predictors for MS (the National Multiple Sclerosis Society states that siblings or children of those with MS have a 1 in 40 risk of also having MS), there is no clear connection that one generation passes it to another.  What Alan did pass to his son David is a “can do” rather than a “can’t do” attitude towards living with MS.

“When I originally received the diagnosis, I had tested positive for West Nile Virus but some of the symptoms did not match up so they tested for MS and found I had the relapsing/remitting form of this disease which my doctors believe may have been dormant in my system but was triggered by the virus,” says David.  “I was in complete denial – I had grown up watching my dad battle MS and my symptoms were not really the same so I just could not believe it.”

There are four variations on the aggressiveness and progression of MS disease, Alan’s was the primary progressive type, a diagnosis only 15 percent of all MS patients receive.  With primary progressive there are no flare-ups or periods of remission such as with David’s type of MS – which means for Alan it is supposed to be a slow degeneration of the body’s functions.

Originally, David’s devastation took on the typical reaction people have when faced with a difficult diagnosis:  “Why me?”  He relates how one day while in a wheelchair he watched his brother playing on the floor with his kids and wondered to himself, “Will I ever have that?”  You can hear the emotion in his voice as he continues, “I’m almost embarrassed to admit that is how I felt because when I looked from my brother and nieces and nephews to my dad and realized, here is this man who has lived with this disease for 20 years and he has never complained, I realized life can go on and you can find ways around this disease just like my dad did.”

“I have a motto I live by – you have to be TUFF,” says Alan.  “It stands for: Target what you need to do; Understand everything you can about the challenge in front of you; Focus on how to live with or beat that challenge; Fight, Fight, Fight – you have to have the drive and desire to keep living and keep fighting for yourself and those around you.”

Osmond father and son tackled MS the same way they approach the music business – all out or as Alan says “I may have MS but MS does not have me.”

“I was given a cortisone shot when I was first diagnosed in 1987,” says Alan, “and it just about killed me.  It was right then that I decided there has to be a better way and I started investigating alternative medicine that would not have the side effects of traditional drugs.”

Family and Faith

Both Osmonds have found ways to deal with MS and overcome many obstacles and the dire prognosis of their physicians.  David was able to get up and out of his wheelchair with powerful steroid shots that helped him walk down the aisle with his beautiful bride, Valerie, a few years ago.  “I proposed to her from my wheelchair and she said, ‘Yes!’ so being able to walk down the aisle with her was something I just knew I had to do.”  He has not been back in his wheelchair since and the couple now has two beautiful daughters, ages one and three.

Father and son embrace all-natural homeopathic remedies and David takes up to 50 all-natural supplements a day while Alan adds a daily dose of 2,000-5,000 IUs of Vitamin D; they believe in using essential oils, such as Frankincense, for aromatherapy and they follow a healthy diet based on gluten-free (wheat-based products) and casein-free (milk protein) foods with limited meat and other proteins.  The strict adherence to an all-natural diet which Alan blends into most of his meals has helped manage his MS symptoms and helped him lose 30 pounds.  Alan also enjoys hydro-exercise – the buoyancy of the water not only takes the pressure off of sometimes painful joints but also helps with balance while practicing movements.  In addition, both Alan and David avoid stimulants such as cigarettes, coffee or caffeinated sodas, which is part of their Church of Latter Day Saints faith, and they believe in the power of prayer and positive thinking.  If there is an Osmond prescription for helping to tame the symptoms of MS it is simply “family and faith.”

In fact, both Alan and David credit their wives, Suzanne and Valerie respectively, with the kind of unconditional love so essential in a spouse when someone is facing a chronic illness.  According to the National Health Institute Survey conducted by the Centers for Disease Control, 75 percent of marriages among those couples dealing with a chronic illness end in divorce – 50 percent higher than the overall national divorce rate.

David and wife Valerie

David and wife Valerie

“There is a good side to every challenge in life,” says David.  “Sometimes dealing with something like multiple sclerosis can make your marriage better, I know both my wife and I have learned more patience with each other through this journey and I absolutely would not be where I am at today in conquering MS without her.”

Alan agrees that it was Suzanne who helped him seek the alternative remedies which have him defying all the odds with his prognosis.  All doctor predictions and prognosis pointed to Alan being in a wheelchair by now but instead Alan travels with Suzanne and is walking only occasionally using a leg brace or cart when he has to walk long distances.  Alan says, “It is not just one person who gets MS, it is the whole family.”  That is one of the reasons why Alan created his Web site, TheFamily, which addresses family issues around chronic illness and other life lessons.

Alan and David admit that they have learned a lot from each other through this journey with MS.  David says his dad has taught him to never feel sorry for himself, to embrace both the blessings and burdens in life with a positive attitude and to help as many people as you can with whatever you can.  Alan believes David has taught him what patience and perseverance are all about.

“I know it’s crazy to say, but it is actually a great time to have MS,” says David.  When his father was diagnosed more than 25 years ago, there were not a lot of options but today David, who sits on the board of the Nancy Davis Foundation for MS and attends her annual conferences for the foundation’s Center Without Walls says, “There are eight drugs on the market and several more being approved by the FDA as we speak.  The numerous choices we now have to attack this disease that is attacking our bodies – especially with the education about alternative, all-natural choices that I have made for my lifestyle – are encouraging.  I truly think we are going to lick this disease and the great research minds agree – they believe MS is one of the chronic illnesses that I may see a cure for in my lifetime.” (See more with David and other celebrities from the Nancy Davis Foundation for MS Race to Erase MS Event).

Alan with wife Suzanne

Alan with wife Suzanne

When I asked both Alan and David what are their private passions – both responded almost simultaneously with “spending time with family.”  While David enjoys sports like skiing even though his balance and agility are not what they used to be because of the MS, and Alan loves to continually learn new things and brainstorm on ideas – like teaching himself html code so he can build web sites – both men are happiest when surrounded by family.

As we wind up the interview, David is eager to get back to playing Legos and watching Disney movies with his two young daughters – a scene he was not sure he would have just a few years ago.  He says he wears a ring on his right hand that is engraved with ETTE – Endure To The End.  He says he has had the ring since before his MS diagnosis, so today he adds, “Endure to the end …of the day.”  With his girls calling for daddy from the other room, we say our “so longs” and I wish Alan happy birthday (June 22) and both men a happy Father’s Day.  I laugh as I later see a tweet from David – it says simply, “Going to make tshirts for my girls that say ‘Having MS gets on my dad’s nerves.’”

CastofCaregivers Cover FINALFind more inspirational celebrity caregiving stories and helpful information and resources in Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

©2015 Sherri Snelling

Marg Helgenberger Juggled College, Career and Caregiving

May marks National Multiple Sclerosis Awareness Month and few celebrities are as passionate about raising awareness for this disease than the Emmy Award-winning actress Marg Helgenberger.  Marg cared for a father who was diagnosed with MS when she was still in college in her 20s. Today, there are more than 1.5 million children between the ages of 8-18 who are the primary caregivers for parents and grandparents with chronic illnesses.  A Bill and Melinda Gates Foundation study on high school drop-outs reported 1 in 4 left school because of their caregiving responsibilities.

Sherri Snelling spoke to Marg about how she has stepped into the spotlight as a champion for those living with MS, a disease which claimed her father’s life over 25 years ago when Marg was just starting her acting career.

Marg Helgenberger sounds as strong and in charge as she did playing Catherine Willows, the independent single mom and forensic crime scene analyst on CBS-TV’s top-rated drama series, CSI.  However, as we talk about her recent work to bring awareness and support to those suffering from multiple sclerosis (MS) and how this disease impacted her dad and her whole family, the vulnerability of youth and past painful memories resonates in the voice of this ageless actress.

The Age of Innocence

MARG HEADSHOT

In the 1980s, Marg was still a college co-ed at Northwestern University with a future full of promise when she got the call that her father had a devastating chronic illness.  Marg thinks back about that day and the five years that her father struggled with MS.

“My dad was a young man when he was diagnosed with MS – he was so full of life and to see this disease overpower him in such a short time was really sad and devastating,” says Marg.

Marg grew up in America’s heartland, a small Nebraska town where fields, farms, family and friends abounded.  Her close knit clan included an older sister, her younger brother and her parents.  Her mom was a nurse and her dad, Hugh, owned a butcher shop.  At first, her father originally attributed the tingling and numbness in his arm to his physically intensive job lugging sides of beef around and constantly chopping and cutting – he thought he just had a pinched nerve.  However, as the symptoms progressed and persisted, he was eventually given the diagnosis of multiple sclerosis (MS) – and the prognosis could not have been worse as it was an extremely rare and progressive type of MS.

Multiple sclerosis is one of the numerous chronic illnesses for which there is still no cure, although according to the Nancy Davis Foundation recent research is encouraging.  Today, more than 400,000 people in the U.S. and 2.5 million people worldwide live with this insidious disease that attacks the central nervous system.

Essentially, the myelin, which is the protective covering for the nerve fibers in the central nervous system, become inflamed or damaged and through this inflammation the myelin becomes scarred, thus forming sclerotic patches.   These multiple scars or lesions cause interference with the transmission of signals to the brain and spinal cord that then cause the unpredictable and often debilitating symptoms that MS patients experience such as numbness or tingling in the extremities to periods of blindness and even full paralysis.

 

Twice as many women as men are diagnosed with MS, and it is typically uncovered when patients are 20-50 years old.  While researchers feel there may be genetic predictors for MS, there is no clear connection that one generation passes it to another.  In fact, research has not shown any significant findings on how and why certain people are afflicted with MS.  What they do know is that no two people experience MS in the same way – some patients may experience some or most of the symptoms and may have periods of full recovery.

However, because the disease is not curable, it is a progressive and degenerative disease of varying degrees.

Most patients fall into one of four categories:  1)  Relapsing/Remitting (the most common with 85 percent of MS patients in this category where you have flare-ups with periods of remission); 2)  Primary/Progressive (continuous worsening of the disease with no flare-ups or remissions); 3)  Secondary/Progressive (begins as relapsing/remitting but if untreated becomes primary/progressive); and 4)  Progressive/Relapsing (the most rare with continuous decline and increasingly intense flare-ups). Marg’s father had Progressive/Relapsing MS and was diagnosed when he was only 45 years old.

It Takes A Village

Marg remembers this time as very challenging for her family.   Her mom had just recently been diagnosed with breast cancer and underwent a double mastectomy when Marg was a junior in college.  Now just a year later, the family was hit by the news of her dad’s disease.  In the 1980s they did not have the therapies and medications for MS that they do today.  Marg remembers going with her mom and dad to the hospital where he would get corticosteroid shots that would leave him relieved from some of the pain but bloated, unable to sleep and miserable.

Marg at Northwestern graduation with mom and dad

Marg with her parents for her Northwestern University graduation

 

It was during this period that Marg decided she wanted to pursue an acting career and the Big Apple was where she had to be.  However, she says she felt guilty over not staying in Nebraska to help her mom care for her dad.  So often, family members in Marg’s position give up their dreams.  But, Marg’s parents were supportive of their daughter and encouraged the pursuit of her acting passion in New York.

As Marg’s career took off, she landed a key role on the TV soap opera, Ryan’s Hope, and began appearing on popular primetime TV shows like Spencer for Hire and China Beach.   Meanwhile her dad’s symptoms continued to worsen.  Originally he was able to get around with a cane but he quickly became wheelchair-bound and could no longer work.  Since her mom had to continue her job as a nurse to make ends meet, her father was often home alone.  One day his wheelchair got jammed as he tried to get around a hallway corner and he was stuck there for hours.  That is when the family hired a professional health care worker to provide home care for Marg’s dad while her mom was at work.  With money tight, Marg, her mother and her brother formed a caregiving tag team with her mom and brother performing the physical care and Marg providing a lot of the financial resources.  Marg also tried to get home as many weekends as her job would allow.

It was during this period that Marg said she really appreciated her small town, rural America upbringing.  The head of the local Jaycees (also known as the United States Junior Chamber), a civic organization for leadership training for those ages 18-41, contacted Marg and said they wanted to hold a fundraiser to buy a wheelchair-equipped van for her dad and family.  They were able to raise enough funds that Marg could match the amount they raised and they could purchase the vehicle.

“It really struck me as so sweet and that there is such a power of community when someone is in need,” says Marg.

It was this experience that planted the seed of inspiration in Marg to become a champion to help others.  While her acting career continued to soar with roles in TV (Perfect Murder, Perfect Town, The Tommyknockers) and films (Erin Brockovich, Mr. Brooks), she also became a passionate advocate for breast cancer awareness and fundraising, hosting an annual golf tournament in her home state to fund breast cancer treatments and research at the local Omaha hospital.

She told me that “not a day goes by that I don’t think about my dad,” and now her advocacy is bringing more awareness to finding a cure for MS.

“While I am so proud of the progress made in breast cancer treatments and the small role I could play in helping people, multiple sclerosis just doesn’t get the kind of attention as other diseases so I want to shine a spotlight on this disease which is so devastating for families,” says Marg.

Watch Sherri’s interview with Marg from the Race to Erase Event

Me catching up wth Marg Helgenberger

Me catching up wth Marg Helgenberge

 

 

 

 

 

 

Additional articles and blogs from Sherri Snelling about caring for those with multiple sclerosis, breast cancer and the impact of caregiving on America’s youth:

The Osmond Family’s Greatest Act – Winning the Daily Battle Against MS

Nancy Davis Races to Erase MS

Famous faces on breast cancer

Caregiver Weight Connected to Breast Cancer Risk

Caregiving’s Lost Generation: The Nation’s Children

This blog is adapted from Sherri Snelling’s book,  A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

CastofCaregivers Cover FINAL

 

Snoopy to the Rescue – Pet Therapy Can Help Caregivers

snoopy-5366 dr free imageMy favorite cartoonist the late Charles Schulz of Peanuts fame wrote that, “Happiness is a warm puppy.” As we celebrate National Pet Week May 4-10, I wonder if Schulz knew that happiness is just the start when it comes to enhancing the lives of older loved ones in nursing homes or assisted living, terminal patients such as those suffering from cancer or AIDS, children with special needs and even caregivers looking to improve their own health.  Known as Animal-Assisted Therapy (AAT), there is a growing movement to increase animal/patient interactions for health and wellness benefits.

The notion of pet therapy all began in the 1860s although most of the studies were conducted in the 1980s.  While the medical community is still waiting for scientific data that shows pet therapy can have long-term or behavioral change benefits, even famous nurse Florence Nightingale recognized that animals provided a level of social support in the institutional care of the mentally ill over 150 years ago.  In an effort to prove the therapeutic benefits of pet therapy, the National Institute of Health has funded grants to study scientific evidence-based research in therapeutic effects on children.

You may have read about the dogs that can smell cancer in their owner long before a formal diagnosis is made, help calm children who have an epileptic seizure or even bring people out of comas.  One story from Pet Partners (formerly known as the Delta Society) is that they were called to visit a terminally ill patient.  When the handler arrived with her cat, the patient had slipped into a coma.  As the handler put the cat into the bed, the patient suddenly awoke, removed his arms from under the sheets and started to pet the cat.  I truly believe animals have special healing powers and a sixth sense.  To back up my notion, I read that Dr. Edward Creagan of the Mayo Clinic Medical School observed, “If pet ownership was a medication, it would be patented tomorrow.”

While dogs, cats and rabbits are most commonly used with older patients, dolphins and horses have also proved effective with children with mental health issues, epilepsy, physical disabilities or autism.  The biggest benefits of cozying up to a “warm puppy” are:

Socialization

Older loved ones often feel isolated whether living alone at home or in a facility such as a nursing home or assisted living.  In fact, Human-Animal Interactions published a study of elderly dog owners revealing 75 percent of men and 67 percent of women considered their dog their only friend.  Some studies have found that just a few minutes a day petting or visiting with an animal lowers the stress hormone of cortisol and increases the feel-good hormone of serotonin. The results can range from lowered heart rates and blood pressure to decreased depression.  For older loved ones still living at home, if they can manage the daily needs of a pet (feeding, walking), some surveys have found that the interaction and companionship of a pet can improve your loved one’s health through increased physical activity and even lower pain levels in some arthritis patients.

Emotional

Depression in older patients can be common, especially if they recently lost a spouse, received a terminal diagnosis or had to move from the comforts of home.  Pet therapy or even a new pet can provide unconditional love, comfort and helps reduce anxiety, particularly noted in nursing home patients.

Many assisted living facilities now have a Pet Care Coordinator to help seniors care for their own pet.  If an owner forgets to feed the pet or it becomes too difficult to walk them frequently, etc. the Pet Care Coordinator can help keep pets up-to-date on veterinary visits, grooming and vaccinations.   Silverado Senior Living which includes memory care facilities for Alzheimer’s and dementia care residents encourages pets in the facility – both privately owned pets and visits from pet therapy organizations. Pet therapy for those with Alzheimer’s or dementia has also proven to be a powerful tool for what is known as “sundowners,” the evening periods where patients become agitated or confused.

Animals have even proven to be valuable members of the hospice team for a terminally ill loved one.  There is a famous cat in Providence, Rhode Island known as Oscar who is one of the critical members of the hospice team in the local nursing home.  Patients and family members have reported that when Oscar would enter the room, there was a sense of calm—even though Oscar was known by residents as visiting a room when someone was dying.  As opposed to a bad omen, Oscar brought comfort and peace to both the patient and their family members.   Oscar stays with the patient, sitting quietly in their lap or on their bed where he remains until the loved one has passed.

For children with autism, pets can improve their communication skills, which can often be stressful.  Because animals are non-judgmental, special needs kids relax and are able to absorb other benefits during their pet therapy sessions.  Animals’ nonverbal communication and profound acceptance can be soothing for those with difficulty using language.   Hippotherapy, which is therapeutic horsebackriding, is practiced in 24 countries and benefits those with physical, psychological, cognitive, social, and behavioral problems.  In fact, the American Speech and Hearing Association now recognize hippotherapy as a treatment method for individuals with speech disorders.  While some benefit from the connection and the relationship built with the horse, other riders benefit physically from the movements that help build core strength, body awareness and muscle memory.

Pets can also benefit the caregivers.  Caregiving can make you feel like you are all alone.  While adding a pet to the list of loved ones you have to care for may seem like overload, having that happy face and wagging tail ready to give you some unconditional love when you return home can benefit caregivers as well.  Studies have found that caregivers are twice as likely as the general public to develop chronic illness due to the prolonged stress of caring for a loved one.  If having a pet can increase your exercise, lower your blood pressure and bring a smile to your face – maybe finding a Lassie, swimming with Flipper, holding Thumper or riding Mr. Ed is just what the doctor has ordered.

Following are organizations where you can find pet therapy handlers/animals or participate in caregiving pet events:

Pet Partners  (formerly Delta Society) Therapy Animal Program trains and screens volunteers with their pets so they can visit patients/clients in hospitals, nursing homes, hospice and physical therapy centers, schools, libraries and many other facilities. Over 10,000 handler/animal teams have been trained and accredited through Pet Partners.  The Pet Partners Service Animal Program provides information and resources for people with disabilities, as well as their friends and family, who are considering getting a service animal or who are currently partnered with a service animal.

Pets for the Elderly Foundation matches seniors with cats and dogs by underwriting the pets’ adoptions.

Therapy Dogs Inc. is a national registrar with a listing of more than 12,000 handler/dog teams in U.S. and Canada. The organization provides registration, support and insurance for volunteers who want to provide pet therapy services.

American Cancer Society Bark for Life is a fundraising event that honors the caregiving qualities of our canine best friends. Canine caregivers are canine companions, guide dogs, service dogs, rescue dogs, therapy dogs, police dogs, cancer survivor dogs and diagnostic dogs who, with their owners, are joining the American Cancer Society as relay teams and participants.

Numerous organizations in local communities, including Pet Therapy, a non-profit organization in Southwest Florida bring pets into nursing homes for weekly visits with puppies and dogs brought by adult and even child volunteers.

Read more about pet therapy from Sherri Snelling’s blogs and articles:

New study on dogs helping dementia patients

Healing Power of Pet Therapy

You can find more information in Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care

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Holly Robinson Peete – Superstar Sandwich Generation Caregiver

As we commemorate National Parkinson’s Disease Awareness and National Autism Awareness this month, our CEO Sherri Snelling interviewed Holly Robinson Peete, TV star, singer, author and co-founder with her husband, NFL star Rodney Peete, of the HollyRod Foundation which helps families of those with Parkinson’s disease and autism.  These are two health issues Holly knows well – her father suffered from Parkinson’s and her oldest son, RJ, is living with autism.  This Super Sandwich Generation caregiving star, talked to Sherri about getting rid of guilt, keeping her marriage in play and leading Team Peete to help others.

Holly R Peete Parkinsons and Autism

When it comes to superstars in this game we call life, Holly Robinson Peete is a top draft pick.  An actress, talk show host, singer, author, passionate advocate, wife and mother, Holly appears to have that perfect existence.  But, even the most perfect pearls are formed by being tossed about in rough seas.

Holly’s perfect life has faced two unforeseen and often devastating blows.  While juggling a thriving acting career, marriage and motherhood, she was also caring long distance for her father who suffered with Parkinson’s disease and simultaneously learned that one of her twins had autism.

The Sandwich Generation of family caregivers – more than 24 million strong according to the National Alliance for Caregiving – is defined as someone who is sandwiched between generational care, caring for a child or children still at home while also providing assistance or full-time care to an older parent.  In Holly’s case, she is Super Sandwich Generation: dealing with a father with a progressive disease of the central nervous system, and raising twins, one who was healthy and active (her daughter Ryan), and the other (son RJ), who was withdrawn and showing the symptoms of a special needs child.

For some people, this double hit would be enough to bring you down before the game even gets started.  But, for Holly Robinson Peete, she learned to fight through to get to the goal line.

From Sesame Street to 21 Jump Street

It was in the 1980s when Holly was still in college at Sarah Lawrence in Bronxville, New York, that her father started showing the early signs of what would be eventually diagnosed as Parkinson’s disease.  He was only 46 years old.

ALotOfHotWaterGordon Sesame StreetHer father, Matthew T. Robinson, Jr. was a producer and also played “Gordon” on the award-winning PBS-TV children’s program Sesame Street in the 1960s and 70s.  In the late 70s and 80s he went on to become one of the most prolific TV screenwriters for shows such as the wildly popular, The Cosby Show.  Just as her father thrived in TV, Holly came by the acting gene naturally.  In the 1980s and 90s, she decided to give acting a go and was riding high on a career that saw her become a breakout TV star on 21 Jump Street alongside a then unknown Johnny Depp followed by her star turn on Hangin’ with Mr. Cooper.  During this time, since Holly’s parents were divorced, it was up to Holly and her brother to support their father as his disease progressed.

It is estimated that one million people are diagnosed with Parkinson’s disease (PD) and each year there are 60,000 new cases in U.S.  This neurodegenerative brain disorder is characterized by a progressive destruction of cells in the central nervous system that reduces supply of dopamine causing nerve cells to fire incorrectly and causing patients to lose control of their normal body movements. While later stages of the disease are devastating, early warning signs can be subtle and progress gradually.  Not every PD patient has the same symptoms. Some experience poor balance and frequent falls, rigidity or muscle stiffness, tremors, and Bradykinesia which is the slowing down or loss of movement (shuffling steps, loss of one arm swing when walking, and difficulty or inability to turn the body).  The most high profile people living with PD today are the actor Michael J. Fox and former world heavyweight boxing champion Muhammad Ali.

“My first reaction to my dad’s diagnosis was ‘what is Parkinson’s’?” says Holly.  As a young college student she raced to the library to find out everything she could about the disease. “I saw two words in the books I read:  neurological and incurable.  I felt helpless and in a dark place and it was hard, this was in a pre-Google period and there was no Michael J. Fox or Muhammad Ali who had raised awareness about Parkinson’s.”

Double Dose of Devastation

While still providing care to her dad, Holly’s career was taking off and so was her love life.  She had fallen for Rodney Peete who had been a superstar college football player at USC and one of the NFL’s best quarterbacks with a 16-year career playing for the Philadelphia Eagles, Washington Redskins, Dallas Cowboys and Carolina Panthers.  They were married in 1995 and two years later Holly was a sought-after actress, NFL wife and new mom to fraternal twins Rodney Jackson and Ryan Elizabeth.

It was at this exciting time for Holly, that life gave her two blows.  Her father’s illness was progressing to a point where he needed around the clock care and Holly and her brother decided he needed to live in a special care facility.   Since Holly lived in Los Angeles and her father was in New York, this made Holly one of the eight million long-distance caregivers.

“The day we moved my dad into the facility was singlehandedly the worst day of my life, to this day I still have regrets about the decision but there really were not a lot of choices,” says Holly with the pain still evident in her voice even though this was almost 10 years ago.  She had her twins, a husband who was on the road for six months out of the year and she was pregnant again.  “The guilt has never really gone away but I don’t hold myself accountable anymore – it was a hard choice but really the only choice.”

cover of autism file magazine Apr 2012It was during this painful period in Holly’s life that her three-year-old son, RJ, was given a devastating diagnosis:  autism.

“I know it’s a cliché but when we were told about RJ, my life just stopped right there in that doctor’s office,” says Holly.  “I call that day the never day – we were told all the things my beautiful baby boy would never do and at first I felt 10 times more than hopeless.”

Holly recalls how the diagnosis of her son was very different from learning about her dad’s disease.  “Even though my dad was young when he was diagnosed with Parkinson’s, it was totally different to hear that your three-year-old child will never really do anything normal.”

Mars v. Venus

What happened next came out of left field for Holly.  Her husband Rodney had been “my rock while I cared for my dad,” always there to support his wife and the father-in-law who adored him.  But, suddenly with RJ’s diagnosis, Rodney became withdrawn, frustrated and definitely living in denial.

“This was the classic men are from Mars, women are from Venus scenario,” says Holly.  “Men and women just think and do things differently.”

Initially, Rodney was in denial about RJ and as is typical of fathers of special needs children, he distanced himself and was less involved in the daily struggle in part because he was still playing in the NFL which kept him on the road for months.  While it is estimated that 85 percent of parents with special needs children divorce, Holly actually thinks the distance saved their marriage.  “It gave me time to cope on my own without facing Rodney’s different attitude and ideas about RJ,” says Holly.  “Rodney originally thought RJ just needed more discipline, I knew it wasn’t about that at all.”

While Rodney retreated, Holly got to work.  She learned everything she could about autism in the same way she had educated herself about Parkinson’s disease.  Holly learned that autism impairs a person’s ability to communicate and socialize normally with others and often has a physical manifestation of repetitive behaviors.  Statistics showed that one in every 110 children has autism spectrum disorder (ASD) and symptoms can be subtle or significant.  She also learned that there is no cure for autism.

Given little hope by doctors for RJ’s ability to assimilate into normal childhood, Holly refused this dismal outlook for her son and turned to alternative measures.  She found a wonderful autism therapist, she established a gluten-free diet for RJ which had some very positive effects and she brought music into his life which she found soothed her son.  When RJ recorded his first music single, Holly believes it was a way for him to not feel “judged” as he often did during sports or other activities.  She also maintained as normal a life as possible for her other children, which in addition to RJ’s twin sister Ryan now included sons Robinson and Roman.

During this time, Rodney and Holly admit to a lot of foul plays with each other.  In reflection, Holly says, “I wish I had been more patient with Rodney and respectful of his denial but I was too focused on RJ.”  She credits Rodney for coming up with the winning game plan.

“Rodney had that ‘oh my god’ moment when he realized he could lose his family but he chose instead to enter into the fight and save us all.”  Holly said when she and Rodney got the same game plan going, everything changed.  Just a few weeks ago on Valentine’s Day, Holly and Rodney renewed their marriage vows with all four children as their attendants.

Team Peete Scores

Rodney credits an autism father support group with helping him understand that instead of being dismayed with RJ’s inability to operate in Rodney’s world, Rodney learned to enter RJ’s world.  The result was Rodney’s 2011 book, Not My Boy! A Dad’s Journey with Autism, which he hopes will help other fathers of special needs children who are struggling to understand their situation and create a “new normal.”

Holly co-authored a book for Scholastic with her daughter Ryan who wanted to help other kids learn about her brother’s autism.  The book, My Brother Charlie, gave Ryan a hero’s role in her brother’s daily challenges and won an NAACP Image Award.  And, together Holly and Rodney have built the HollyRod Foundation, originally created to support families facing Parkinson’s to honor her father now expanded to also help families living with autism in recognition of the lessons the Peetes have learned from RJ.

Her relief from the guilt she says is inevitable for all caregivers comes from the impact of the HollyRod Foundation that helps families just like her family needed answers and hope.  “At some point, you take your guilt and you move on and I did that by paying it forward,” says Holly.  “Knowing that my family can help others and maybe ease their caregiving journey is the best gift of all.”

Spoken like a true superstar.

 GROUP4660RT Peete family portrait

Photo:  Christopher Voelker

Read Sherri’s book which includes more of the interview with Holly Robinson Peete, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care. My person note on Holly – since I interviewed her in 2012 we have stayed in touch and Holly continues to be a passionate advocate for caregivers. I was proud to share the stage with her last fall where we both spoke about caregiving to a crowd of 500 in Chicago.

CastofCaregivers Cover FINAL

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©2015 Sherri Snelling

Caregiver Stress is No Joke

stress imageWhile some people will start the month by playing a funny joke on a friend or co-worker, the beginning of April, which marks National Stress Awareness Month, makes me think about the stress that plagues those who are caring for an older loved one.  And, believe me, caregiver stress is no joking matter.

While stress is the No. 1 complaint when it comes to a caregiver’s own health and wellness, finding stress relief is just one more thing caregivers have to do.  However, if you do not develop ways to become stress-free, it can seriously impact your ability to continue caring for your loved one.

Numerous studies point to the direct correlation between prolonged stress and health risks.  Chronic stress can lead to higher blood pressure which can lead to hypertension which can ultimately lead to stroke or heart attack.  In fact, a study conducted by the Commonwealth Fund found caregivers are twice as likely as the general population to develop chronic illness such as heart disease or cancer due to prolonged stress. In addition, the American Psychological Association in its annual Stress In America™ survey showed the negative health impacts from stress are more pronounced for those over age 50 who are also a family caregiver.

In addition, studies have found caregivers who experience stress turn to bad habits to cope.  One study from the National Alliance for Caregiving found 10 percent of caregivers use alcohol or medications to cope with stress.  Another survey, Stressed and Strapped: Caregivers in California conducted by the UCLA Center for Health Policy Research, found among the state’s six million caregivers, more than 16 percent were smoking and 27.5 percent are obese – at least four percentage points higher in each case than non-caregivers.   For caregivers with serious emotional distress, the survey found the likelihood of smoking goes up by about 208 percent.

How Can Caregivers Find “Stress Relief?”

Stress Ball dreamstime_m_8343500 (2)

Start by taking a Caregiver Stress Test developed by the American Medical Association or the Alzheimer’s Association.  Just by taking this test you may start to realize you are nearer to the breaking point than you thought.  You can and should use this stress test to share with your doctor.

If you score off the charts, it is time to decompress before your engine blows.  Here are five tips to help find stress relief:

 

 

 

 

Vault dreamstime_m_8453967 (2)1. Find your “vault” – we all have a spouse, an adult child, a sibling, a best friend or spiritual advisor who can give you a shoulder to cry on or help get your mind off things for even a few minutes.  I call these friends your “vault” because you know whatever you tell them will go in the vault and stay there.  They will not judge you or share your feelings with others – it is a sacred conversation that truly remains confidential.   Having a “vault” is a precious gift in our reality-TV obsessed world of “airing one’s dirty little secrets.”

 

 

 

 

two hands pulling each other or holding on.2. Join a support group of other caregivers – if you are frustrated, angry or depressed, it helps to let off steam or find comfort by talking to other caregivers who understand exactly what you are going through.  Often, caregivers find talking to other caregivers who are going through similar challenges and anxieties can be empowering and nurturing.  Sometimes other family members and friends can be sympathetic but not empathetic.  It is important to find a support group specific to your situation – whether you are caring for someone with cancer, Alzheimer’s or in the case of our veterans, you may be a caregiver of someone with post-traumatic stress disorder or a physical disability – find the group where others in the circle or online truly understand.

One thing I have heard over and over again from caregivers is they feel they are all alone.  The reality is you are not alone.  By reaching out and voicing your fears, frustrations and anger in a safe environment with other caregivers – you will be amazed at how just talking can start to lift that weight off your shoulders.

 

Yoga at Sunset dreamstime_m_17221336 (2) 3. Try yoga, tai chi, or meditation – these relaxation activities are not just for the “new age” lovers – there are real health benefits to performing at least one of these activities just a few minutes a day.  Yoga and tai chi can lower your blood pressure, improve your posture and circulation, relax your muscles, provide headache relief and boost your immune system.  Even if you do not have time for yoga, just try calmly breathing for a few minutes.  Everyone’s favorite physician, Dr. Oz advises lying on your back and taking 10 deep, long breaths a day – it will help take your mind on a journey to a happy place and helps removes toxins from your body.   Learning how to relax is a true skill – one you have to practice every day.

 

 

 

Washing Soapy Hands dreamstime_m_16837149 (2)4. Do something to soothe you physically – you will be amazed at how it calms your mind.  A bath is great or if you do not have the time, just running your hands under warm water for a few minutes can truly relax you.  You can also try giving yourself a massage – wrap your fingers around your upper arm and knead your fingers all around the arm working your way down to the forearm and wrist.  Repeat on the other arm.  AAAHHHH.

 

 

 

Eyelid dreamstime_m_2327813 (2)5. Get enough sleep – Seven to eight hours is recommended.  Create a sleep-inducing environment:  dark, quiet, comfortable and cool.  Do not use your bedroom for anything other than sleep (sex is also OK according to the experts!).  No watching TV, using your laptop or iPad or even reading in bed (this is my downfall).  Make sure you do not eat at least two to three hours before bedtime and avoid caffeine or alcohol close to bedtime.  Smoking can also cause you to have trouble sleeping.  If you find you are tossing and turning at night and you cannot get those eyes closed, try drinking green or chamomile tea 1-2 hours before bed or put a lavender pillow near your head which aids relaxation.  Establish consistent sleep and wake schedules, even on weekends.

 

 

 

 

Stress can be a caregiver’s biggest enemy.  When you become a “stress-buster,” you will be on your way to finding balance that will bring you better health and wellness and you will find more energy and emotional stamina to continue to care for your loved one.

Read more about health and wellness for caregivers as well as how celebrities who have been caregivers find their “Me Time” in Sherri Snelling’s book,  A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care

Copyright 2015 Sherri Snelling

CastofCaregivers Cover FINAL

Caregiver Health & Wellness Recipe: Eat the Rainbow

Photo: AlexMax/Dreamstime

Photo: AlexMax/Dreamstime

March is National Nutrition Month and while it is sometimes hard for the average person to follow good nutritional guidelines, it is even harder if you are juggling your own healthy eating needs while caring for your loved one.

A study by the National Alliance for Caregiving shows that 38 percent of caregivers who feel their health have declined while caring for a loved one report weight gain or loss.  Skipping meals, eating fast food on the run, turning to non-nutritious snacks to cope with stress can all become part of a caregiver’s nutritional reality.

However, ignoring your own nutritional needs will impact your energy level, your ability to stay focused and alert and your physical and emotional stamina.  If your health starts to go downhill, it can be a slippery slope that can lead to you becoming as ill as or worse than the one you are caring for.  If you become sick, who will replace you to care for your loved one?

Super Foods for Super Heroes – The Caregivers

Photo:  Alexandra Petruk/Dreamstime

Photo: Alexandra Petruk/Dreamstime

Caregiving can be a superhuman role that can zap the physical and mental strength of even Wonder Woman.  When you are feeling overwhelmed, tired and stressed to the max, it is important to keep your powers at their peak.  Food is the fuel that can keep our bodies strong and our minds clear.

If someone told you there was a pill you could take which will lower your cholesterol, reduce your risk of heart disease and cancer and enhance your mood, would you take it?  Well, it may not be a pill but those foods are available at your local grocery.

According to WebMD, here is a grocery list of Super Foods that will ensure you remain a Super You. To make it fun, all you need to think about is “eating the rainbow” – choose colorful foods which typically provide the nutrients, fiber and other physical health needs to keep caregivers going strong.

Photo: Bethany Van Trees/Dreamstime

Photo: Bethany Van Trees/Dreamstime

Fiber keeps cholesterol in check and can aid weight loss since you’ll feel fuller. Look for beans, whole grains, fruit and vegetables.  I try to “eat the rainbow” daily – one food a day which is red, orange, yellow, green and blue makes it fun and easier to remember to add these super foods to your daily diet.

 

 

 

 

Photo: Dreamstime

Photo: Dreamstime

Blueberries are great anti-oxidants and an anti-inflammatory that can lower your risk of heart disease and cancer as well as other chronic illnesses.

 

 

 

 

 

Photo: Dreamstime

Photo: Dreamstime

Omega-3 rich fish such as salmon, herring, sardines and mackerel help your heart, joints, memory and some medical professionals believe it can also reduce depression.  A National Alliance for Caregiving study showed that 91 percent of caregivers who say their health has declined suffer from depression.  If you’re not a fish fan, you can also find Omega-3 in walnuts and flax seeds.

 

 

 

Photo: MCWMeng/Dreamstime

Photo: MCWMeng/Dreamstime

Soy such as tofu, soy milk or edamame, as well as almonds, oats and barley lower

  1. In addition, oatmeal can help regulate blood sugar levels which is important for diabetic
  2. (However, if you have a family history of breast cancer, it is not recommended you add soy to your diet).

 

 

 

 

 

 

Photo: Dreamstime

Photo: Dreamstime

Tea has been shown in several studies to lower cholesterol.  While the antioxidant power is the same in black tea as green tea; the green version has an added element which studies have found helps inhibit the growth of cancer cells.

 

 

 

 

 

Photo: Batuque/Dreamstime

Photo: Batuque/Dreamstime

Calcium found in dairy foods, salmon (again), leafy green veggies, almonds (again) asparagus and figs build strong bones and helps reduce the risk of osteoporosis – women over age 51 should have 1,200 mg daily.

 

 

 

 

 

 

 

Photo: Monkey Business Images/Dreamstime

Photo: Monkey Business Images/Dreamstime

Dark Chocolate – hallelujah!  Dark chocolate – at least 60 percent cocoa content – has eight times the antioxidants as strawberries and can help lower bad cholesterol (LDL) by up to 10 percent.  But don’t overindulge, 2-3 oz. a day will do it.

And, of course, don’t forget your daily multivitamin.

It is hard to be diligent about diet if you are caregiving.  But, if you can plan your grocery shopping on Mondays (part of your Me Time Monday plan) it might make it easier to remind yourself – every week – that you are as important as the person you are caring for.   Take along this list of Super Foods and stock up – it will help ensure you stay strong so that you can continue being a super hero for your loved one.

 

 

 

CastofCaregivers Cover FINALTo read more about nutritional needs for seniors and family caregivers, get Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

You can also read Sherri’s other blogs about nutrition for caregivers and senior loved one’s nutritional needs:

Caregiver Weight Connected to Breast Cancer Risk

David Murdock – 90-year-old billionaire and caregiver

The Osmond Family’s Greatest Act – Winning the Daily Battle Against MS

How You Can Combat the Senior Hunger Crisis

 

©2015 Sherri Snelling

Cat in the Hat Creator a Caregiver, Too! Who Knew?

Happy Bday Dr Seuss

Who Reads?  We Read!

On March 2 every year, we celebrate Read Across America Day, the reading initiative started by the National Education Association in commemoration of the birthday of our beloved children’s book author, Dr. Seuss (whose real name was Theodor Geisel). Some of his most widely published children’s books included:  The Cat in the Hat; Horton Hears a Who!; Green Eggs and Ham; One Fish, Two Fish, Red Fish, Blue Fish; and my favorite, How the Grinch Stole Christmas.

Dr Seuss wife HelenWho Cares?  He Cared!

What is perhaps the least known about Dr. Seuss is that he was a caregiver for his first wife, Helen Palmer Geisel, who was also a children’s book author.  For several years during perhaps his most productive writing phase, Helen, suffered from several chronic illnesses including battling cancer.  While Helen helped guide Theodor’s talents of his whimsical drawings of animals and the telling of their stories, Geisel gave his muse the love and care she needed throughout their marriage until her death in 1967.

In the years Geisel cared for his ill wife, there was not much recognition of the role of the spousal caregiver and even less support, especially for men who were caregivers. Since the Geisels did not have children, Geisel was primary caregiver for his wife during those years.

man and womanMen As Caregivers

In a 2009 study, Caregiving in the U.S., published by the National Alliance for Caregiving, at that time men made up about one-third of all caregivers.  However, a 2012 Pew Research Center’s Internet and American Life Project reports men now comprise 45 percent of all family caregivers in the nation. And, according to a study by the Alzheimer’s Association, men caring for a family member with Alzheimer’s disease or dementia almost doubled from 19 percent to 40 percent from 1996 to 2011.

Often men’s caregiving duties are to handle the financial and legal paperwork, medical insurance and home safety modifications for an older parent.  But, when it is spousal caregiving, as it was with Dr. Seuss, the caregiving duties can be all-encompassing.

And the emotional impact of caregiving hits men as much as women.

In the book, Who Says Men Don’t Care – A Man’s Guide to Balanced and Guilt-Free Caregiving, authors James V. Gambone and Rhonda Travland help men identify their caregiving style.  The authors looked at four generations of men as well as male personality differences and identified the following caregiving styles:   the Manager, the Searcher, the Loner, and the Techno-Virtual Caregiver. According to the authors, one issue for men is having a harder time asking for help.

“While all caregivers face stress and frustration, we found that men often have a harder time dealing with a caregiver role,” says Travland.  “It’s very difficult for them to ask for help.”

While they may not seek help as readily as female caregivers, a 2012 study conducted by researchers at Bowling Green State University shows men may cope with caregiver stress better than women.  The study looked at the differences in male and female caregivers of an older parent and how they dealt with stress.

Photo: DavidLee/Dreamstime

Photo: DavidLee/Dreamstime

“We found men seem better at dealing with caregiver stress because they take a ‘block and tackle’ approach to caregiving tasks,” says I-Fen Lin, associate professor and lead researcher on the study. “They complete a caregiving task and move on to the next thing. Conversely we found women are more socialized to be nurturing but they internalize their caregiving performance with constant worry and anxiety, thus, leading to higher stress levels and more persistent stress.”

During Geisel’s caregiving years support groups for caregivers were virtually non-existent. In today’s world, whether in-person support or virtual online support is a growing area of the caregiving world. Homewatch CareGivers, a comprehensive home care agency founded in 1980, created what it’s billing as the first online community for male caregivers.  The online forum provides male caregivers with crucial caregiving information from peers such as how to deal with sundowning of an Alzheimer’s loved one, how to bathe a parent of the opposite sex or what advice veteran caregivers have for a new caregiver.  According to the site, men are more likely to use the internet to seek information and support but less likely than women to seek caregiving training which makes the forum a vital resource for men who are caregiving.

When it comes to caregiving, we all have to find ways to get support so we can continue to have balance in our lives – whether it is writing a book, coaching a soccer team or working at a demanding job.  While Dr. Seuss wrote for children, his lessons on life impact all ages. These words from our beloved Dr. Seuss should help caregivers to feel empowered to find that balance and remember that their own health and wellness is in their hands and their hearts:

Dr Seuss Brains in My Head

 

 

CastofCaregivers Cover FINALTo read more about men as caregivers and resources that can help, get Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

You can also read Sherri’s other blogs about men as caregivers:

Billionaire caregiver David Murdock, CEO of Dole

Famous men of caregiving

Increase of men as caregivers

 

 

 

 

©2015 Sherri Snelling

Caregiving Goes to the Oscars

Photo: JamesSteidl/Dreamstime

Photo: JamesSteidl/Dreamstime

What do the Oscars and caregiving have in common? Quite a bit…read below for the articles about recent movies that have engaged our caregiving emotions and the Oscar winners who have been real-life caregivers.

 

Movies that teach us about caregiving

Still Alice Julianne MooreStill Alice – the movie that may spark the Alzheimer’s movement

1st Annual Caregiving Goes to the Oscars (2012)

2nd Annual Caregiving Goes to the Oscars (2013)

Amour – A Caregiving Movie Review

And the Oscar Goes to Caregivers

Oscar winners who are or have been real-life caregivers

Photo: CelebrityPhotos/Dreamstime

Photo: CelebrityPhotos/Dreamstime

Catherine Zeta-Jones won a Best Supporting Actress Oscar for her performance in 2002’s Chicago.  Here is our interview with her about dealing with her mental health issues while caregiving for another Oscar winner – her husband Michael Douglas who battled throat cancer.

Catherine Zeta Jones – a caregiver’s self-care mental health plan

Photo: Creative Commons

Photo: Creative Commons

Diane Keaton won her Best Actress Oscar for her performance in 1977’s Annie Hall, playing the title character. In real life Keaton was a sandwich generation caregiver – caring for a mother with dementia while raising two children.

Diane Keaton – Sandwich Generation caregiver

Photo: Courtesy of Campbell Family

Photo: Courtesy of Campbell Family

When Glen Campbell was diagnosed with Alzheimer’s disease in 2011 his family including his wife Kim and daughter Ashley did not know what was in store for them as his future caregivers but as a family they made one last farewell tour with the music legend.  Nominated for best song at this year’s Oscars for “I’m Not Gonna Miss You,” the Rhinestone Cowboy’s story still touches our hearts.

Glen Campbell’s Farewell Tour

Photo: ImageCollect/Dreamstime

Photo: ImageCollect/Dreamstime

While Glenn Close has not yet won an Oscar, she has been nominated six times including for 1988’s Fatal Attraction playing a woman who had mental instability. The role hits close to home as Glenn has played real life caregiver to her sister who has mental illness.

Glenn Close wants to change your mind about mental illness

Photo: CelebrityPhotos/Dreamstime

Photo: CelebrityPhotos/Dreamstime

Jodie Foster has won two Oscars – one for The Accused and the other for Silence of the Lambs. But it wasn’t until she was honored with a lifetime achievement award at the Golden Globes in 2013 that we learned she was also a sandwich generation caregiver for her mom with dementia.

Jodie Foster – Golden Girl Shines a Spotlight on Her Sandwich Generation Role

Photo: ImageCollect/Dreamstime

Photo: ImageCollect/Dreamstime

Reese Witherspoon won an Oscar for her portrayal of June Carter Cash in Walk the Line. But it was running not walking that brought Witherspoon face to face with a big caregiver dilemma – an older driver who had lost control of the vehicle. Read Witherspoon’s understanding story of the incident:

Reese Witherspoon Forgives Senior Driver in Recent Accident

A Football Wife Helps the NFL Tackle Dementia

Football 50 yard line dreamstime_m_15024968 (2)As the New England Patriots celebrate their glory as victors in the Super Bowl this Sunday, another NFL victory took place off the gridiron several years ago and was led by a warrior woman.

Her name is Sylvia Mackey, wife of NFL Hall of Fame and 1971 Super Bowl hero John Mackey of the Baltimore Colts. Their love story is about football, courage, overcoming all obstacles and fighting for support of those afflicted with neurological challenges. Following is an excerpt from my book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, where I interviewed Sylvia about her story and how she changed the game for the NFL.

For Love of the Game…and the Man

When it comes to the gladiators of the gridiron, he was the Charlton Heston or Russell Crowe of his day.  But in the end, it would be his wife – on the sidelines of his entire career – who would become the warrior at the center of the action.  When John Mackey, No. 88, was inducted into the Pro Football Hall of Fame in 1992, he was only the second tight end to receive the honor.  He was and still is considered one of the best tight ends to ever take the field.  In fact, Mike Ditka, himself a Hall of Fame player and the first “pure” tight end to be inducted into that rare club of exceptional players, statjohn-mackey nfl baltimore colts from WebAs a Baltimore Colt, where he played all but the last year of his career, John scored one of the most famous plays in the NFL championship history.  It was Super Bowl V played in 1971, when John caught the nail-biting pass from the quarterback Johnny Unitas that first careened off the hands of the opposite team’s player, grazed the fingertips of his teammate and finally wound up safely in the arms of John who then ran it for a then-record 75-yard touchdown.  It was this decisive play that helped the Colts beat the Dallas Cowboys and won John his coveted Super Bowl ring.

Twenty-one years later, as John took his place in football’s pantheon of great players for his Hall of Fame induction ceremony, right by his side was the woman who had been in the same spot since his college playing days, his wife, Sylvia.  Theirs would prove to be a true love story, challenged only by a devastating medical diagnosis.

Little did either John or Sylvia know that day in 1992 that 14 years later, John’s toughtest battles would be fought off the football field with his lovely wife serving as both tackler and blocker.  At age 65 John Mackey was diagnosed with frontotemporal dementia (FTD), a degenerative disease caused by the rapid deterioration of the frontal and temporal lobes of the brain.

Tackling Dementia

What makes Sylvia’s story one of inspiration is this diagnosis could have sacked her (in football jargon) but instead she did not let this devastating news knock her down.  One incident that highlights the special challenges dementia caregivers face was played out at the Baltimore/Washington International Airport.

“John and I were on our way to an autograph signing – we never missed one and I was determined this was something we were going to continue to do – it always made John happier as we got ready for these annual trips,” says Sylvia.

JohnandSylviaMackey (2)But this year was different.  There was an incident with the TSA airport security that almost took them both down – literally.  Her husband, proudly wearing his Super Bowl ring and trademark cowboy hat (hallmark of his Super Bowl win over the Dallas Cowboys), refused to remove these items and place them on the conveyor belt to be scanned.  In his mind, he did not understand there had been a 9/11, he did not understand why they did not recognize him, and ultimately he thought they were trying to rob him of his precious possessions.

As John grew more frustrated with the TSA agents who, unaware of his diagnosis, thought he was just being a belligerent traveler, the agents grew increasingly irritated and finally tackled him but not after chasing the six-foot two-inch 220-pound former football player who dragged the agents several feet through the airport until several more agents joined in, handcuffed him.

While a tearful and frightened Sylvia explained to the agents and curious onlookers her husband was the NFL great and one of Baltimore’s favorite sons, John Mackey, and that his illness meant he had no ability to understand what was happening, she ultimately convinced the agents to call an ambulance and they took him off to a local hospital. She collapsed while they dragged her confused husband away, and thought to herself, “I don’t know if I can do this anymore.”

Hemingway wrote, “Courage is grace under fire.” 

When Sylvia caught up with her husband at the hospital, John was back to his typical, jovial, social self – signing autographs for many of the doctors and nurses who recognized the NFL great.  It was at this moment as her husband basked in the bright light of his fame, she realized she could not give up on her husband or herself.  That is when her courage took flight.

Instead of deciding that attending future autograph signings or Super Bowls would be out of the question, Sylvia got to work contacting the head of TSA at Baltimore/Washington International.  She explained her situation and asked for his help to allow her husband to travel – especially to the sporting events and autograph signings he truly lived for and were important to maintaining some type of normalcy in their lives.

The TSA executive designed a plan with Sylvia to have John brought through a private area where they could scan him without incident and without his having to remove the items precious to him.   In addition, the TSA executive also would contact the TSA executive at the arrival airport to explain how similar treatment of John upon his return flight out of their airport would be helpful to avoid any similar, dramatic incidents that neither party wanted.

Now before you think these special plans are just for those with famous last names – this is a lesson learned for all caregivers from Sylvia’s story. If you plan ahead, you can use Sylvia’s travel strategy to continue to travel – most airports will work with caregivers on the special travel needs of their loved one.

The Final Play

Sylvia Mackey bio photoSadly, John Mackey lost his battle with dementia and passed away in 2011.  A few years ago before losing her husband, Sylvia had written a passionate letter to then NFL Commissioner Paul Tagliabue asking for more support for retired players when it comes to their long-term care (LTC).  In his decade-long career, Mackey made about $500,000 – a salary many back-up players make in one season today.  The health benefits plan was championed by current Commissioner Roger Goddell and was adopted by the NFL in 2007.  The NFL named it the 88 Plan, to honor Mackey’s jersey number.  The plan provides retired players suffering from Alzheimer’s disease, dementia, ALS or Parkinson’s disease with $100,000 annually for long-term care or adult day care or $88,000 annually to secure care at home.

Today, Sylvia is a board member of the Association of Frontotemporal Degeneration (AFTD) and speaks to caregivers across the country about the impact of dementia on families.

This is an excerpt on Sylvia Mackey’s story from Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, available on Amazon, Barnes & Noble and other online and local booksellers. 

CastofCaregivers Cover FINAL

Heart Health – Know Your Numbers

 

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Every October we are immersed in a sea of pink – the color for breast cancer awareness –  yet the No. 1 killer of women (and men)  in America remains heart disease.  In fact, twice as many women die from stroke or cardiovascular disease than all cancers combined, including breast cancer.  More than 1 in 3 women will die from heart disease this year – one every minute.

Every February, the American Heart Association celebrates its Go Red Campaign in an effort to paint the town red and get women to stop and understand the truth of their heart disease risks.  Over the last 11 years the campaign’s success has paid off with amazing results:

  • More than 627,000 women’s lives have been saved through awareness and education – that is 330 lives per day
  • Almost two million women have completed the Go Red Check-up – a 10-fold increase since 2003
  • Women have changed their heart risky behaviors – smoking has decreased 15 percent, 1 in 2 women have increased their exercise and cholesterol levels are 6-18 percent lower for those with readings over 200

“Women who Go Red have the awareness and are more empowered to make lifestyle changes,” says Dr. Suzanne Steinbaum, Go Red cardiologist and author of Dr. Suzanne Steinbaum’s Heart Book:  Every Women’s Guide to a Heart Healthy Life.  “Nine out of 10 of the women who visit our web site have made at least one healthy behavior change. But we still need to spread the word because there is a disconnect between women knowing about heart disease as the No. 1 killer and understanding their personal risk.”

Diane and her twin sister, Denise
Diane and her twin sister, Denise

Learn Your Family’s Health History

One woman who became the most unlikely poster woman for heart disease is Dianne Kane-McGunigle of Quincy, Mass.  The 53-year-old platinum blonde stunner was always fit and healthy working as a personal trainer and fitness instructor and running marathons on weekends.  The mother of two had grown girls had always watched her numbers – things like weight, cholesterol and blood pressure and according to her doctor was as healthy as a woman at least a decade younger.

But one day last year, Dianne clutched her chest, hit the floor and found her police officer husband rushing her to emergency.  All she could think about was, “Please don’t let this be bad – I haven’t had grandchildren yet.”

“I come from tough Irish stock and in retrospect I was overlooking some small warning signs because in my family you just tough it out,” says Dianne.

A couple of days before this emergency, Dianne had experienced some acid reflux and her forearms were achy and kind of numb.  She chocked it up to pushing herself too hard in recent workouts.  But the night before her attack she had tiny spams in her heart and she started sweating and feeling nauseous.  Next thing she knew she was on the floor and then in the hospital.

“Heart disease in women often presents differently than what we see in men,” says Dr. Steinbaum.  “It can be a sudden chest pain, such as what Dianne experienced, but it can also be more subtle – shortness of breath, jaw pain, back pain, flu-like symptoms, difficulty sleeping and the symptoms Dianne experienced such as nausea and vomiting.”

In addition, women who are caregivers – caring for an older parent or spouse with a devastating disease – are at greater risk for heart disease because of the prolonged emotional stress of caregiving, neglect of their own health and wellness needs and a tendency to adopt or rekindle bad habits such as smoking.

The ER doctors ran tests and told Dianne she was fine and was probably just experiencing a panic attack or had over-exerted herself at the gym.  But Dianne knew better.

“If I have any message for women out there – it is to be an aggressive advocate in your health and the health of your loved ones,” she says.  “I knew something was really wrong and I wasn’t going to be ushered out of the hospital as someone who just had a simple panic attack.”

She begged a kind nurse to run more tests.  “I’m dying,” Dianne told the nurse.  “You have to help me.”

Additional tests found that indeed Dianne had suffered a heart attack known as a widow maker.  This is a type of heart attack where it is a stenotic left main coronary artery –  a blood clot prevents blood from pumping through the left descending artery often resulting in a massive, sudden, fatal heart attack.  This is the same kind of heart attack that Rose O’Donnell survived last year.

“My doctors and I truly believe if I had not been as fit as I was, I would surely be dead,” says Dianne.

Heart Monitor dreamstime_m_4176220 (2)The American Heart Association advises women to know five important things when it comes to heart disease:

1)      Don’t smoke. Period.

2)      Know your numbers – blood pressure, cholesterol, blood sugar (for diabetes risk which is tied to heart disease).

3)      Maintain a healthy weight and BMI (body mass index) by eating nutritiously.

4)      Have a consistent exercise schedule (it keeps your body fit and reduces stress).

5)      Know your family history.

It is #5 that hit Dianne like a Mack truck.  She had all the other items checked but she had no idea that in her family, the widow maker type of heart attack is on both sides of her family tree.

“That was my wake-up call,” says Dianne, who has an identical twin, Denise.  Now this Go Red spokeswoman talks to other women about heart health and understanding each of the five things that could contribute to a life-altering event.

“Go Red encourages women to wear your red and tell five friends about the heart disease risk factors,” says Dianne.  “I have five sisters, including my twin sister, and we’ve all talked about our family risk.  I Go Red for them.”

 

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