Music and Multiple Sclerosis – How the Show Goes On for the Osmonds

Alan and David Osmond

Alan and David Osmond

As we celebrate National Multiple Sclerosis Month, 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 my interview with Alan and David from my book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care.

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).

The Show Goes On for the Osmonds

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.”

Alan with wife Suzanne

Alan with wife Suzanne

David and wife Valerie

David and wife Valerie

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.

“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).

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 t-shirts for my girls that say ‘Having MS gets on my dad’s nerves.’”

©2016 Sherri Snelling

 

The Famous Faces Behind the Men of Caregiving

We think of the typical caregiver being a boomer-age woman caring for her older parents yet according to the National Alliance for Caregiving, men make up 34 percent of the 65 million caregivers across the country.

And those are men who are in primary caregiving roles – it does not represent the husbands, brothers and friends who are providing the support network for other caregivers. Whether it’s giving a sister a break like Patrick Dempsey did for his sisters who cared for their mom with ovarian cancer or providing the much-needed comfort and care for a caregiving wife like Seth Rogen does for his wife Lauren Miller who cares for her mom with Alzheimer’s disease, men are essential to the caregiving nation we are becoming.

This article celebrates our men who are caregivers – heroes all.  Following is a list of men you might know who have all been on the caregiving journey.

To the men of caregiving – we salute you!

Sons caring for parents

 

Baldwin-BrothersThe Baldwin Brothers – Alec, William, Stephen and Daniel comprise the famous Baldwin brothers – actors and activists all. Yet in their hearts they are mama’s boys – helping their two sisters care for their mom, Carol, who successfully battled breast cancer. Carol is one of the 2.9 million breast cancer survivors in the U.S. according to the American Cancer Society.  She formed the Carol M. Baldwin Breast Cancer Research Fund where all four sons have been actively involved in helping to raise more than $3 million for medical research grants to find a cure.

Patrick Dempsey dreamstime_m_20160433 (2)Patrick Dempsey –On TV he plays “Dr. McDreamy” the brain surgeon eye candy on Grey’s Anatomy. In real life, Patrick has helped care for his mom, Amanda, as she survived two bouts of Stage IV ovarian cancer.  Providing the much-needed support for his two older sisters, Patrick commuted between his home base with his wife and children in Los Angeles cross country to his hometown in Maine where his mom and sisters live.  According to the National Cancer Institute, about 60-80 percent of ovarian cancer patients face a recurrence of the disease. Because of the stealth nature of ovarian cancer, Patrick said in an interview with Web MD, “Be relentless, question information, and double check it. Get a second opinion. Do your research.”

 

 

 

 

 

 

 

Seth Rogen dreamstime_xs_23106908 (2)Seth Rogen – Star of movies such as Knocked Up and The 40-Year-Old Virgin, comedic actor Seth Rogen is part of the caregiving team along with his wife who care for her mother with Alzheimer’s disease.  Diagnosed at age 55, Seth was shocked at how early Alzheimer’s can strike a family and how little people of his generation know about the disease.  Seth and his wife are two of the 15 million Americans who care for someone with dementia. This star of The Guilt Trip with Barbra Streisand (whose mom also had Alzheimer’s), Rogen realized Alzheimer’s is no laughing matter.  He is now an advocate for the Alzheimer’s Association and has created, along with wife Lauren, the annual “Hilary for Charity” comedy improve event with fellow comedians such as Paul Rudd and Steve Carroll to raise funds and awareness among younger generations for the disease.

 

 

 

 

 

 

 

Dwayne Johnson dreamstime_xs_23274249 (2) Dwayne “The Rock” Johnson – Playing superheroes, military warriors and loving dads on film and starring in the latest Fast and Furious movie, former professional wrestler Dwayne Johnson has also cared for a mom through lung cancer.  In 2010, Dwayne announced his mom had beaten stage 3 lung cancer where she had undergone chemotherapy and radiation. Dwayne told Jay Leno on his late night talk show, “She fought like a warrior.”  Just this summer. Dwayne purchased a white Cadillac for his mom, who had her car repossessed when he was growing up and she was a struggling single mom, in celebration of her ongoing cancer victory and as a thank you for always being there to support his dreams.

Rob Lowe dreamstime_m_19870699 (2)

Rob Lowe – In the ‘80s he was the heartthrob member of the famous Brat Pack and more recently his career has flourished in TV as a star in both dramas and sitcoms on The West Wing, Parks & Recreation and a recent campy turn in the HBO feature on Liberace, Behind the Candelabra starring Michael Douglas and Matt Damon. Rob has also been a caregiver for both is mother and father who divorced when he was still in his teens. He lost his mom (and his grandmother and great-grandmother) to breast cancer and helped his dad through a successful battle with lymphoma. An advocate for both diseases, Rob has been the Lee National Denim Day ambassador for breast cancer and filmed a PSA TV spot for lymphoma about the risk of infection and other side effects of chemotherapy.

Joey McIntyre dreamstime_m_22662550 (2)Joey McIntyre – The ‘90s boy bander is out on the road with his Boston bandmates for a nostalgic tour for the older yet sexier NKOTB (formerly known as New Kids On the Block).  As one of nine kids growing up in Needham, Mass., Joey has also stepped into the spotlight as advocate and caregiver for his mom who was diagnosed with Alzheimer’s disease.  When I interviewed Joey at the Alzheimer’s Association A Night At Sardi’s gala event (watch the interview with Joey here), he told me, ““It’s a process and it’s different for everybody . . . it is bittersweet because with my mom, she is still there, she’s got the one liners and she is so funny and she is still a performer but she doesn’t remember five minutes ago . . . it’s tough for the families.”

Bryan Cranston, Peter Gallagher, Victor GarberBryan Cranston (AMC’s Breaking Bad), Victor Garber (TV’s Alias, Titanic) and Peter Gallagher (USA Network’s Covert Affairs) – These three sons and TV/film stars have all cared for moms with Alzheimer’s disease.  Peter, who cared for his mom for the more than 20 years she lived with the disease, shared with me at an Alzheimer’s Association event, “An Alzheimer’s diagnosis can be as devastating to the caregiver as to the person diagnosed. Doing it yourself, I don’t know how long you are going to last . . . [but] the more you understand about the disease the better.”  He also said that this disease can be “embarrassing” and “terrifying” but that is why the Alzheimer’s Association is a great place to start to find the help and support needed. (watch my full interview with Peter here)

 

 

 

Henry WinklerHenry Winkler – Even though it’s been 40 years since Happy Days appeared on TV screens, the cool biker with a heart, “The Fonz” is an enduring pop culture icon.  The actor who brought the Fonz to life is also a caregiver.  Henry serves as the ambassador for the Open Arms: Raising Awareness of Upper Limb Spasticity educational campaign with a mission to help those who are impacted by upper limb spasticity and do not know where to turn for help.  Personally impacted by the issue, Henry’s mother suffered a stroke and for 10 years Henry helped care for her she suffered from upper limb spasticity.

Husbands caring for wives

valerie harper and tony cacciottiTony Cacciotti – You may not know his name but you know his wife as “Rhoda” from the famous ‘70s TV show The Mary Tyler Moore Show. Husband of TV actress Valerie Harper who was recently diagnosed with terminal brain cancer, Harper offered in interviews how “bereft” her husband was and that he was having a tough time handling the diagnosis.  At first, he hid the diagnosis from her until they received a second opinion.  Since then the couple are living life fully each day.  Harper has said, “We’re all terminal – it’s just a matter of when and where and how.”

Brosnan, Short, Wilder, MurdockPierce Brosnan (Bond movies, Remington Steele), Martin Short  (Saturday Night Live), Gene Wilder (Willa Wonka and the Chocolate Factory, Young Frankenstein) and David Murdock (billionaire owner of Dole Foods) – All four lost wives to ovarian cancer, known as the silent disease because symptoms are often masquerading as other health issues.  Brosnan helped wife Cassandra battle the disease for years until she succumbed at age 42. Martin Short lost wife Nancy Dolman to the disease.  Gene Wilder and David Murdock took the grief of their loss and turned it into centers for helping others and finding a cure.  Wilder, whose wife was comedian/actress Gilda Radner, sought various treatments for her cancer for three years.  In her memory he co-founded Gilda’s Club, now part of the Cancer Support Community. Murdock lost wife Gabrielle at age 43 and invested $500 million in personal wealth to create the leading research institute, North Carolina Research Campus, dedicated to using plant-based solutions to prevent chronic illness such as cancer.

paul-mccartney1Paul McCartney – As one of the famous Beatles, he sang, “Will you still love me when I’m 64?” When it came to love, Paul’s muse and partner for 29 years was beloved wife Linda.  He would have loved her beyond age 64 if she had survived.  Sadly, he lost her to breast cancer when she was only 56. In an interview with the Daily Mail, McCartney admitted to needing help with the loss, “I got a counsellor because I knew that I would need some help. He was great, particularly in helping me get rid of my guilt [about wishing I’d been] perfect all the time.”

mitt romneyMitt Romney – As a 2012 presidential candidate and successful former governor and businessman, Romney attributes much of his success in life to his wife Anne.  She gracefully lives with multiple sclerosis, an autoimmune disease affecting 2 million people worldwide.

U.S. Open - Round OnePhil Mickelson – The three-times U.S. Masters Golf Tournament pro became a caregiver in 2009 when his wife, Amy, was diagnosed with breast cancer.  He suspended his playing career to help his wife through chemotherapy and care for their young children.

Hal Holbrook, Dixie Carter dreamstime_xs_18921771 (2)Hal Holbrook – Film actor Holbrook (Lincoln, Water for Elephants, Into the Wild) cared for his actress wife Dixie Carter (Designing Women) through her battle with endometrial cancer which she lost in 2010.

Facebook photoMichael Tucker – An early breakout role in Diner led to his best known starring role in TV’s L.A. Law where he appeared on the same screen with wife Jill Eikenberry. They are a great example of a caregiving team caring for Jill’s mom who has dementia.  Mike chronicled their caregiving journey in his humorous book, Family Meals.

Dads caring for special needs children

Montegna, Peete, GorhamJoe Montagena (Godfather Part III, TV’s Criminal Minds), Rodney Peete (NFL star quarterback),  Christopher Gorham (USA Network’s Covert Affairs)All three of these fathers have children on the autism spectrum disorder (ASD).  Joe’s daughter Mia, now in her 20s, was born prematurely and eventually was diagnosed with autism.  Rodney’s son, R.J., was diagnosed at age three and is now a teen.  He wrote a book about his struggles in coping with his son’s diagnosis, Not My Boy! A Father, A Son and One Family’s Journey with Autism and runs the non-profit organization, HollyRod Foundation, he and wife Holly Robinson Peete founded to help families facing Parkinson’s disease and autism. Christopher’s son was diagnosed a few years ago at age 9 with Asperger’s syndrome.  He has talked about getting outside help with everyday tasks such as grocery shopping and housecleaning so he and his wife can dedicate time to the therapies and interventions needed for their son while also caring for two other children.

colin farrellColin Farrell – known for his bad boy behavior and mesmerizing film roles, Colin says his life changed when his oldest son was diagnosed with a rare genetic disorder known as Angelman syndrome.  Characterized by jerky movements, sleeping problems, developmental disability and seizures which can be treated, there is no cure for the disorder.  Colin has said in interviews when your child takes his first steps, you hold your breath but when your special needs child finally takes a step after being told he may never walk, “those first steps take you into a whole different realm.”

John McGinleyJohn C. McGinley –Best known for his starring role on TV’s Scrubs, he’s also starred in films such as Platoon, Wall Street  and most recently 42, John has a teen son with Down syndrome (DS).  A longtime advocate for DS organizations, he currently is on the board of the Global Down Syndrome Foundation.  One in every 691 births result in a child with DS and after age 40, DS adults have a 100 percent risk of Alzheimer’s disease as well.

Brothers caring for a sibling

Jamie foxxJamie Foxx – He’s an Oscar-winning star (Ray) and music artist but Jamie is most proud of his sister, DeOndra, who has not let her Down syndrome hold her back.  As an ambassador for the Global Down Syndrome Foundation, DeOndra has danced onstage with Denzel Washington and appeared with her famous brother in front of millions at the Grammys and even appeared in one of his music videos.  Caring for family comes naturally to Jamie – as he told Entertainment Tonight, “This little lady right here lives with me along with my other sister, along with my father and my mother. So, we’re one big happy family.”

Ashton Kutcher dreamstime_xs_21212521 (2)Ashton Kutcher –Starring on one of TV’s highest rated sitcoms, Two and a Half Men, Ashton is a loving twin brother to Michael who was born with cerebral palsy and cardiomyopathy requiring a heart transplant at age 13.  As the family anxiously waited for a donor heart, Ashton said he actually contemplated suicide just so he could save his twin brother’s life.  Michael told a People magazine reporter, “Ashton never left my side,” talking of his brother’s devotion. “He showed me the love one brother has for another.” Michael currently serves as a spokesperson for the Reaching for the Stars Foundation that helps children with cerebral palsy which his brother also supports.

 

 

 

 

 

 

 

 

Tommy Hilfiger dreamstime_m_16272164 (2)Tommy Hilfiger – Fashion designer Tommy has been a 22-year supporter of the Nancy Davis Foundation Race to Erase MS event mostly to raise awareness and funds for a disease his sister has lived with for more than 40 years.  His sister Dorothy, now 61, has lived with multiple sclerosis since her teens.  Her one-year-older brother, Tommy, one of nine children, told WebMD, “When you see someone’s life change as a result of a disease, it really hits home.”

Friends and Lovers

both-of-us-ryan-oneal-farrah-fawcettRyan O’Neal – He was the tragic star of the ‘70s movie Love Story in which he lost his love and soul mate (played by Ali MacGraw) to cancer.  But film turned to reality when he cared for long-time love Farrah Fawcett as she battled  and lost her life to anal cancer.  He chronicled their love affair and those last three years trying new therapies and traveling to Germany for experimental treatments to find a cure for her cancer in his 2012 book, Both of Us: My Life with Farrah.

 CastofCaregivers Cover FINALThese stories excerpted from A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care

©2015 Sherri Snelling

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

CastofCaregivers Cover FINAL

 

Celebrity Spotlight – Celebrating MS Caregivers

 

Multiple sclerosis, a disease that attacks the central nervous system, afflicts more than 2.5 million people worldwide. Among those families impacted are some whose names we know including the Osmonds and actress Marg Helgenberger of TV’s CSI  fame.

Alan and Davis Osmond, father and son, are both living with the disease. Sherri Snelling interviewed them for PBS and her book about the challenges, what gives them hope and how family and faith are two of their biggest prescriptions for facing a disease which today has no cure.

Click here to read Sherri’s PBS interview with Alan and David:

The Osmond Family’s Greatest Act – Winning the Daily Battle Against MS (Sherri also featured both Alan and Davis in her book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care)

Marg Helgenberger was a young college student in the Midwest when she suddenly became a caregiver for a father with MS (and shortly after a caregiver for her mother with breast cancer). Her experience through caregiving has led her to become a passionate advocate for both diseases. Sherri Snelling interviewed her for Third Age and featured Marg’s caregiving story in her book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care).

Read Marg’s story – click here:

Also read Sherri Snelling’s article on Huffington Post about the 1.5 million children under age 18 who are primary caregivers for a loved one – typically a parent or grandparent and her article for PBS Next Avenue about the difference in caring for a mom versus a dad:

Caregiving’s Lost Generation: The Nation’s Children

Difference in Caring for Moms versus Dads

You can watch Sherri Snelling interview Marg Helgenberger from the red carpet at the Race to Erase MS Event:

 

 

 

Presenting the 5th Annual CARE-Y Awards

And the Awards Goes to . . . Fifth Annual CARE-Y Awards – Caregivers on TV

5th Annual CARE Y AWARDSFor the last five years I have bestowed my own version of the Emmy® Awards – something I call the CARE-Y Awards℠ that acknowledges both the reel stars and episodes in the past year’s TV programming and the real life caregivers who appear on TV.

With Emmy season just around the corner (the annual Emmy Awards will be broadcast on Sunday, September 22 on CBS), here are my picks for shows and TV champions which put the spotlight on caregiving in America:

 

“Reel Life” CARE-Y Awards – Playing a Caregiver on TV

 

Best Caregiving Sons – Pete Campbell – Mad Men and Jack Donaghy – 30 Rock

Reflecting the increase in men as primary caregivers (42 percent according to the latest Pew Research report),  we award a a tie to Mad Men’s Pete Campbell (played by Vincent Kartheiser) and 30 Rock’s Jack Donaghy (play by Alec Baldwin). Both men have tense, testy relationships with their disapproving mothers yet step in to care for mom when needed.

Mad Men's Pete and Dorothy Campbell and male nurse Manolo

Mad Men’s Pete and Dorothy Campbell and male nurse Manolo

In Mad Men, a recently separated Pete takes on the primary caregiving role for his bitingly critical mother Dorothy (played by Channing Chase). She has progressive signs of Alzheimer’s and Pete secures a male nurse, Manolo, for her 24/7 care.

One poignant moment during this AMC period drama set in the late 60s is when Bobby Kennedy is shot. Dorothy wakes Pete to tell him but he responds that President Kennedy was shot years ago and she is confused. The reality is that although dementia sufferers may live in the past, they still have moments of clarity and this was one of them.

In the season finale we learn that Pete’s mother may be a victim of fraud and foul play as Pete is told his mother fell overboard while on a cruise with her male nurse turned Latin lover.  This episode is all about loss: Dorothy losing her memory, Pete losing his mother’s love to a male gigolo and finally realizing she may be gone forever as he learns his mother is lost at sea.

Watch a clip of Pete and Dorothy here

30 Rock's Jack Donaghy and mom Colleen take a last ride

30 Rock’s Jack Donaghy and mom Colleen take a last ride

In the dark, wry comedy known as 30 Rock Elaine Stritch (cabaret and comedy veteran whose gravel-voice and deadpan humor is pitch perfect here) has played Jack’s fearsome, harpy mother, Colleen Donaghy, for seven seasons, earning an Emmy in 2004 for her guest appearances.  Jack describes his mother as “87 years old which is 14 in demon years.”

In this last season of the show, Colleen uncharacteristically tells Jack she only wants him to be happy and then promptly has a heart attack in the New York City hansom cab on their way to yet another hospital visit. Jack finally realizes beneath the fights and frustration and trips to the hospital was true love – dark, twisted love – from the only woman who could foil his oversized ego and make him a caring human.

Watch Jack and Colleen’s last ride here

Best Episode Featuring a Caregiver’s Challenge – Frank Reagan – Blue Bloods

The Reagans of Blue Bloods: Henry, Frank, Erin

The Reagans of Blue Bloods: Henry, Frank, Erin

In the CBS drama, Blue Bloods, Tom Selleck plays Frank Reagan, the patriarch of an Irish-American family of law enforcement officers in New York City. In this season’s episode, Greener Grass, Frank struggles with his live-in father, Henry’s (played by Len Cariou) diminished driving skills – one of the toughest conversations caregivers face with an older parent. After several unexplained driving accidents and fender benders, Frank’s attempt to talk to his dad about no longer driving goes horribly wrong leaving Frank frustrated and his father angry and fearful.  Ultimately, Erin (played by Bridget Moynahan) talks to both her father and her grandfather and a surprising solution is found.

Watch the driving conversation between Erin, Henry and Frank here

 

Best Special Needs Caregiver – Kristina Braverman – Parenthood

Parenthood's Kristina and son Max

Parenthood’s Kristina and son Max

NBC’s Parenthood has featured a storyline since its first season about a young son, Max (played by Max Burkholder) with Asperger’s syndrome, an autism spectrum disorder characterized by significant difficulties in social interaction and nonverbal communication. His caregiving mom, Kristina, played by Monica Potter (who also was featured in the PBS caregiving documentary It’s Your Turn), plays a cancer survivor and in real life was caregiver to her father.

In this season’s episode, I’ll Be Right Here, Max with the encouragement of his mom who cannot be there because of a cancer treatment so her sister is her back-up, stands on stage before his entire junior high school and bravely talks about his condition for the first time.

Watch Max’s brave speech in front of his fellow students

 

Best Caring for a Veteran – Special Agent Leroy Jethro Gibbs – NCIS

Special Agent Gibbs and marine with PTSD on NCIS

Special Agent Gibbs and marine with PTSD on NCIS

Sometimes caregiving is provided by a sibling or a friend. In one of the highest rated episodes of the top-rated CBS crime drama, NCIS deals with an Iraqi war veteran with post-traumatic stress disorder (PTSD).  The steely agent with the sensitive side is Leroy Jethro Gibbs (played by star and producer Mark Harmon), who  in a two-episode story this season called Shell Shock, helps Marine Capt. Joe Westcott (played by Brad Beyer) retrace his steps to a horrible Middle East incident which helps solve a murder stateside.  During the episode it is former Marine Gibbs who understands Westcott’s pain and also helps Westcott’s father and brother understand the challenges of dealing with the invisible wounds of war.

Watch Mark Harmon and Pauly Perrette in an NCIS PSA on PTSD

 

Best Caregivers of Those with Mental Illness Lifetime’s Call Me Crazy – A Five Film

Lifetime's cast of Call Me Crazy - A Five Film

Lifetime’s cast of Call Me Crazy – A Five Film

Last year Lifetime presented the groundbreaking A Five Film production featuring well-known directors and actors in stories of breast cancer. This year they put the spotlight on the mental health. The National Institute of Mental Health reports one in four U.S. adults have a diagnosable mental disorder yet the stigma of mental illness forces patients and their family caregivers into the shadows.

This two-hour program of five inter-locking stories, Call Me CrazyA Five Film starred Jennifer Hudson, Lea Thompson (real life caregiver to her mom with Alzheimer’s), Octavia Spencer and Melanie Griffith in short stories directed by Ashley Judd, Bryce Dallas Howard and Bonnie Hunt. The emotionally moving stories show us the real drama behind being a caregiver of a loved one battling bi-polar disorder, schizophrenia and PTSD.

Watch the promo for Call Me Crazy

 

Best End-of-Life Caregiving ConversationMeredith Grey – Grey’s Anatomy

Meredith and McDreamy talk end of life on Grey's Anatomy

Meredith and McDreamy talk end of life on Grey’s Anatomy

For nine years Grey’s Anatomy has featured two ongoing storylines about Alzheimer’s disease which affects 5.4 million Americans.  Meredith Grey (played by Ellen Pompeo) lost her mom to the disease and was tested to find out if she carries the “Alzheimer’s genetic marker” in this season’s The More You Genome episode.

In its quirky drama-comedy style of writing, the 30-something Grey talks to her husband Derek Shepherd (played by “McDreamy” Patrick Dempsey real-life caregiver to his mom who battled ovarian cancer) and her best friend Cristina Yang (played by Sandra Oh) about her end-of-life wishes once she starts to experience memory loss.

Watch McDreamy and Meredith talk “end of life wishes” here

 

 

Best Caregiving “Reality” Show – Ruth and Erica – WIGS Channel on YouTube

YouTube's Ruth and Erica

YouTube’s Ruth and Erica

Not all the best programming is on traditional TV networks or even cable as this year’s Emmy nods to Netflix original series such as House of Cards demonstrates.  We follow suit by giving an award to Ruth and Erica, a 13-episode series on the WIGS drama channel on YouTube starring TV stars Maura Tierney (The Good Wife, ER) as daughter  Erica and Lois Smith (True Blood) as mom Ruth.

A cast of TV veterans, including Steven Weber, Michael C. Hall and Jane Kaczmarek are featured throughout the series as Erica struggles to be a caregiver for her parents – feisty, independent Ruth and her Alzheimer’s stricken father Harry, played by Philip Baker Hall (Modern Family). Neither will admit their frailty and increasing needs as they age. It is stark reality wrapped up in brilliant dramatic acting that is our choice for award-winning online viewing.

Watch Ruth and Erika here

 

Our Caregiving Champions Hall of Fame – the Showrunners

This year, I wanted to give special recognition to the creators and showrunners of some of our best TV programming who have integrated a caregiving storyline into their shows.  These champions have not just done lip service or a “fly by” on the challenges of caregivers – they have made it a central part of their show’s story.  Here is my shout-out to those who are delivering TV to help not only entertain us but to educate us.

Shonda Rhimes – Grey’s Anatomy

Shonda Rhimes

She is the queen of the night at ABC when it comes to creating “must watch” TV these days with her debut of Grey’s Anatomy nine seasons ago followed by Private Practice and the watercooler/Twitter following phenomenon of her “gladiators” on Scandal.  It is her dedication to the Alzheimer’s storyline on the long-running Grey’s Anatomy which places her in my hall of fame.  Starting with the struggle of Meredith Grey (played by Ellen Pompeo) and her mom, Ellis (played by real-life Alzheimer’s Association champion Kate Burton who also appears on Scandal) to Dr. Richard Webber (James Pickens, Jr.) who cared for a wife, Adele (played with brilliance by Loretta Devine) with early on-set Alzheimer’s to the latest season where Meredith decides to be tested to see if she carried the Alzheimer’s genetic marker and has to have the “end of life wishes” talk with her husband, Derek “McDreamy” Shepherd (played by Patrick Dempsey), Rhimes and her writing team have never waivered from showing us the daily struggle and challenge for those with dementia and the toll it takes on their family caregivers.

Jason Katims – Parenthood

Jason Katims Parenthood

Jason Katims has been the driver of Parenthood  since its debut in 2010 and from the beginning he focused one of his story lines on the Braverman family coping with their special needs child, Max, who has Asperger’s syndrome.  Katims knows the role of special needs father well.  His son lives with autism making Katims one of the 17 million Americans who care for a special needs child.  We see the challenges in the family dynamic – mother, father, sister, aunt and the bravery of a son trying to be normal and how difficult that daily struggle is making viewers more aware and more compassionate.

 

 

 

Aaron Sorkin – The West Wing

aaron sorkinAlthough the Emmy-winning The West Wing has not been on NBC since 2006, the series can still be viewed on Netflix and has a cult following on Twitter with several of the show’s main characters tweeting about current world and political events (not connected to the original show’s writing team but fan-based). I give a shout out to head writer and executive producer, Aaron Sorkin, who not only created some of the best TV programming ever but gave his main character, President Josiah Bartlett (played flawlessly by Martin Sheen), multiple sclerosis, a degenerative, non-curable autoimmune disease that affects more than 2 million people worldwide.  We watch how someone on the world stage deals with such a weighty secret with the help of his loving caregiver, wife Dr. Abigail Bartlett (played by the brilliant Stockard Channing). Sorkin blends disease, dignity, denial, defiance and duty into an ongoing storyline which shows us the vulnerabilities and strength in dealing with a chronic illness.

Special Recognition Awards

Best PSA Campaign

Royal-Pains castMark Feuerstein (“Hank Lawson”), Ben Shenkman (“Jeremiah Sacani”), and Paulo Costanzo (“Evan Roth Lawson”) of the USA Network drama Royal Pains, which airs in the summer months teamed up for a PSA encouraging all to participate in the Alzheimer’s Association’s “Longest Day” Campaign on June 21 to honor the strength, endurance, and passion of those facing Alzheimer’s every day.

 

 

 

Best Advertising:  Depends starring Harry Hamlin and Lisa Rinna

Lisa Rinna, Harry Hamlin SilhouettesKudos to gorgeous real-life TV star couple for starring in a TV commercial about absorbent briefs showing that incontinence issues can hit even when you still look great on the outside.

 

 

 

Kudos to Programs That Show Ability Rather Than Disability, Disease or Disorder:

the-good-wife-michael-j-fox_320The wonderful guest actor Michael J.Fox on CBS’s The Good Wife who plays a cunning lawyer with Parkinson’s disease – which Fox lives with in real life. MJF will star in his own show, The Michael J. Fox Show, on NBC this fall.

 

 

 

auggie_piper_perabo_covert_affairsShowing that blind doesn’t keep you from spy work – Christopher Gorham plays Augie who is a blind CIA analyst often saving Annie (Piper Perabo) on USA Network’s Covert Affairs.

 

 

 

 

Glee08Artie (played by Kevin McHale) is a singer/guitarist on Fox’s Glee who just happens to also be a paraplegic in a wheelchair.

 

 

 

 

PerceptionEric McCormack plays brilliant but paranoid schizophrenic neuroscientist Dr. Daniel Pierce on the new TNT series Perception.

 

 

 

 

 

 

 

 

“Real Life” CARE-Y Awards – Caregivers on TV

 

Best Caregiver of a Morning Show Host – Sally Ann Roberts, sister to Robin, co-host of Good Morning America

Robin Roberts and Sally AnnRobin Roberts, co-host of ABC’s Good Morning America who beat breast cancer five year ago was hit again – this time with MDS (myelodysplastic syndrome), a type of pre-leukemia that attacks the blood and bone marrow.  In an emotional message, she told viewers she would be undergoing a life-saving bone marrow transplant and that the donor would be her sister, Sally Ann.  Both Robin and Sally Ann talk about the importance of organ donation and encourage everyone to sign up for a donor registry such as bethematch.org.  The transplant took place on September 20 and I wish Robin and Sally Ann swift, successful recoveries.

 

 

Best Caregivers Who Are Lead Actors in a Drama Series – Peter Gallagher and Bryan Cranston 

Best ActorsThis is a tie between Peter Gallagher, who plays Arthur Campbell, head of the CIA on Covert Affairs on USA Network and Bryan Cranston who plays Walter White on AMC’s Breaking Bad.  Both Peter and Bryan cared for mothers who suffered from Alzheimer’s disease and are Alzheimer’s Association Champions. (See Caregiving Club’s interview with Peter Gallagher from the Alzheimer’s Association A Night at Sardi’s event).

 

Best Caregiver Who Is a Lead Actresses in a Drama SeriesMadeleine Stowe

Madeleine Stowe dreamstime_m_21785006 (2)Madeline Stowe, who plays evil Victoria Grayson on ABC’s Revenge was a young caregiver to her father who suffered from multiple sclerosis.

 

 

 

 

 

 

 

Best Caregiver Who Is a Talk Show Host – Katie Couric

katie_couricHeading into season two of her highly rated afternoon talk show for ABC, The Katie Show, longtime news anchor, Katie Couric, cared for her husband who died of colon cancer.  Her sister also passed away from pancreatic cancer.  Couric has been a tireless advocate for colon cancer screenings and education and supports the Entertainment Industry Foundation’s (EIF) Stand Up 2 Cancer campaign.

My special thanks to the writers, directors and producers who help shed more light on caregiving in their programming.  And, special thanks to those real-life caregivers who help the 65 million caregivers across the country know they are not alone when these high-profile celebrities talk of their own caregiving experiences.

 

 

If you have a nomination for a reel or real life caregiver, send me your suggestions at info@caregivingclub.com.  

The Show Must Go On for the Osmonds

Originally published on PBS Next Avenue by Sherri Snelling

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

The Show Goes On for the Osmonds

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.  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.”

Family and Faith

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.”

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.

Valerie and David Osmond

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.

“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.”

Suzanne and Alan Osmond

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).

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.’”

Book Cover SpotlightRead more of David and Alan Osmond’s story in Sherri Snelling’s book, A Cast of Caregivers,  which includes interviews with other celebrity caregivers as well as an A to Z guide on caregiving and how to balance self-care while caregiving. Click here to buy the book now.


Marg Helgenberger – Juggling College, Caregiving and Career

MARG HEADSHOTMay 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.  While she was in her 20s, 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 is stepping into the spotlight as a champion for those living with MS, a disease which claimed her father’s life almost 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.

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 with her mom & dad at her college graduation

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.

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.

She will be in the spotlight in support of MS awareness on May 18 and I know whatever role Marg takes on – actress, advocate, caregiver – this star will continue to shine at whatever she chooses.

Watch Marg’s interview from the Race to Erase Event

This blog is adapted from Sherri Snelling’s book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to CareTo read more of Sherri’s interview with Marg, click here to buy the book now.

 

May – National Multiple Sclerosis and Mental Health Month

Read our blogs this month about caring for those with multiple sclerosis and mental health issues.

Alan and David Osmond – Life Father, Like Son – Living with MS

Originally published on Next Avenue by Sherri Snelling

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).

The Show Goes On for the Osmonds

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.  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.”

Family and Faith

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.”

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.

Valerie and David Osmond

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.

“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.”

Suzanne and Alan Osmond

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).

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.’”

Sherri Snelling is writing a book on celebrity caregivers, A Cast of Caregivers, and the lessons of love and caring that will be published by Balboa Press, a division of Hay House Publishers in January, 2013.

Your Real Age – 8 Tips to Help Caregivers Find Their Inner Child

I recently celebrated my birthday and it got me to thinking about our “real age.”  Whenever I meet a friend for coffee the conversation now turns to our latest health issue (we are at that age) – hurt knees from running, migraines from changing hormones, sun spots on our face, wrinkles on our foreheads, and intestinal rumblings from last night’s Mexican food.  And, when the bill comes, we all hold the check back about 12 inches so we can read it (always forgetting the reading glasses which are now common among my friends).  However, we marvel at how we don’t see ourselves as our real age – and as friends we even comfort each other that we certainly don’t look our real age either.

As we grow older and start to care for aging parents, what is our risk as caregivers for being “older” than our real age because we often neglect our own health and wellness needs?

Real Age Calculator

If you want to take the scary leap with me (make sure you put your knee brace on first) – there is an online calculator developed by the now well-known authors of You – The Owner’s Manual  books, Dr. Mehmet Oz and Dr. Michael Roizen.  It is called the Real Age Test and it takes about 15 minutes to complete the online questionnaire.  Be prepared – it will ask you about your cholesterol levels, blood pressure reading, eating habits, fitness routine, sleep patterns, etc.

What you get is an estimated “age” based on your health and wellness answers as well as tips on how to improve your age score (meaning scoring younger than you really are) in the various areas.

Advice to Caregivers – Don’t Act Your Age

What struck me as I took the test was that so much of what is truly good for our bodies, our minds and our souls are things most of us did when we were kids.  When I recently interviewed Joan Lunden, who cares for her 93-year-old mother, she told me that she tries to find her “inner child” when I asked her how she finds her “Me Time.”

While all childhoods are not alike, here are my 8 Tips to Caregivers on how to tap into the kid you once were and embrace that youthful, carefree time once again that will improve your health and wellness:

1. Naptime:  Health experts say we should get 7-8 hours per night. A study showed that sleeping too little or at odd hours can increase your risk for diabetes and obesity because lack of sleep messes up your insulin levels and slows your metabolism.  In one study, getting only 5.5 hours of sleep a night translated into 12 extra pounds a year.  Remember taking naps as a kid and going to bed at 9pm?  Try to plan your naps and bedtime as if you were nine-years-old again.

2. Bath time:  Remember how we used to hate taking baths as a kid?  Well, as a stressed out adult caregiver, baths are a luxurious dream for which you typically don’t have time.  Baths – especially those taken with Epsom salts and fragrant oil like lavender – help reduce stress, improve circulation and aid relaxation.  A study done in Japan showed that the stress relief from baths helps you fight colds through vascular and lymph system stimulation which encourages bacteria-destroying properties in the immune system.   Take 10 minutes for a bath at least three times a week and don’t forget the rubber ducky.

3. Playtime:  It sounds silly but playtime can actually help caregivers avoid the burn-out they so often face.  While escaping to summer camp may not be feasible, riding your bike, finding a local summer fair to ride the carousel or roller coaster, or jumping into your backyard or local community pool (doing your best cannonball!) can give you the mental health break you need.  Find a few minutes every day or at least once a week to “play.”

4. Outdoor Fun and Sun:  10 minutes of sunshine a day is enough to boost your natural levels of Vitamin D (which promotes calcium absorption needed for strong bones) that have been proven to aid prevention of health risks such as diabetes, multiple sclerosis, cancer, allergies and osteoporosis.  In addition, sunshine boosts your mental health – brain functionality and optimism all improve with increased levels of Vitamin D.  In fact, one study in the Journal of Finance found that stocks traded on sunny days were more profitable than those on cloudy days.

5. Seashells by the seashore:  One of my favorite childhood memories is collecting seashells along the beach with my mom and brother.  We would walk for what seemed like miles to find special colors and shapes.  Since heart disease is the No. 1 killer of women, walking 30 minutes every day gives you the cardiovascular exercise you need to keep your heart healthy according to the American Heart Association.  If you don’t live near the beach, find a hiking trail or just take a brisk stroll through the neighborhood.

6. Daydream:   Remember lying on your back and looking up into the clouds deciding which shapes you could find?  A lion, a car, or even hearts?  If you can find a patch of ground – whether it is your backyard or your neighborhood park, take a few minutes each week to just lie on your back and watch the clouds scroll by (or forget the clouds and just lie on your back in your living room – no TV, no music, no external disturbances allowed).  It is a variation of meditation that ensures you have the mental stamina to keep going as a caregiver.

7. Laugh:  Charlie Chaplin said, “A day without laughter is a day wasted.”  Being a caregiver is nothing to laugh about – it can take a toll on you that is physical, emotional and financial.  But finding the funny bone in caregiving can get you through the day.   My mom told me that when she was caring for my grandma after a stroke, they both slipped as she was transferring her from wheelchair to bed.  Rather than be sad or upset, they both sat on the floor laughing at the absurdity of the situation. One study showed that laughing is a mini workout – it burns calories, increases your heart rate and sends more oxygen to your tissues. Maybe laughter is the best medicine.

8. Hold hands:  Remember the first time you held hands with someone you liked?  Your heart beat faster, your oxytocin levels (“cuddling hormone”) surged and a warm feeling of happiness came over your whole body.  The National Alliance for Caregiving found that most caregivers feel all alone and 10 percent of caregivers who reported a decline in their health had turned to alcohol or prescription drugs to cope with their stress.  Hand-holding can be the prescription caregivers need.  A University of Virginia study showed that wives who held the hands of their spouse or a friend reduced their stress levels.  Reach out physically to a friend or family member or virtually such as through the help of the online site Lotsa Helping Hands that can connect your volunteer community to get you the break to do all the things above.

Becoming a caregiver is a huge responsibility but taking the time to embrace your inner child will help you find the balance you need between caring for yourself and caring for your loved one.

Nancy Davis Making Her Mess with Multiple Sclerosis Her Powerful Message

Nancy Davis

Sherri Snelling, talked with Nancy Davis, the formidable force behind the Nancy Davis Foundation for Multiple Sclerosis as she prepared for her 19th Annual Race to Erase Gala event held May 18.  Since May is National Multiple Sclerosis Awareness Month, Sherri profiles this fearless woman who has been living with MS since 1991 and has galvanized the Hollywood film, TV and music industries, Beverly Hills and New York society and the medical community to raise funds and awareness to find a cure faster for MS.

It started with a tingle in her fingers after she finished a day skiing on the slopes in Aspen.  A lifelong skier, she chalked it up to a little strain from tearing up the moguls all day.  After all, she was only 32 years old and a young mother – a little too soon to be contemplating the proverbial rocking chair.  When her other hand started tingling the very next day, then her whole hand went numb and then a few days after that her eyesight started to go, a future in a rocking chair was about all the hope doctors were giving her as they told her she had multiple sclerosis (MS).

That was 21 years ago.  Since then Nancy Davis, daughter of the late billionaire oil tycoon and former owner of 20th Century Fox Marvin Davis and wife Barbara, has used her enduring inner-strength, her family and personal connections and her incredible ability to bring people together for a common goal to find a cure for the multiple sclerosis (MS) that has been her constant companion for the last two decades.  In its 19th year, the Nancy Davis Foundation Race to Erase MS gala event, held annually at the Century Plaza Hotel among the glitterati in Beverly Hills, has raised more than $30 million to fund the Foundation’s Center Without Walls (CWW).

Connecting Those Who Can Create a Cure

Nancy’s brainchild, CWW provides the support that has permitted the medical community to link together multidisciplinary scientific programs and expertise across the country.  The Center’s network of the top six MS institutions that have established leading, innovative research programs include: UC San Francisco, Harvard, Yale, USC, Johns Hopkins, and Oregon Health Sciences University.  These six leaders are dedicated to understanding the cause of MS, advancing the development of new treatments and ultimately leading the race to find a cure for the autoimmune disease that currently attacks more than 400,000 people in the U.S. with 200 more people diagnosed every week.

What is so remarkable about Center Without Walls is that Nancy was able to literally tear down the bureaucracy that typically invades the research community where egos can sometimes outweigh outcomes.   Nancy told me, “It just didn’t make sense to me to have these wonderful research teams duplicating effort – if we want to find a cure faster, we have to work in cooperation and share information so that we get there in 10 years instead of 20.”  To that end she applauds the efforts of the six universities participating in CWW and says that it is the “vision, insight and flexibility of these extraordinary doctors” that will help end MS.

Some observers may believe that connecting the nation’s top researchers to lay down their competitive impulses and instead work together seems Herculean and near impossible. But impossibilities are not part of Nancy Davis’ vocabulary.  “My motto is take the impossible and make it possible,” says Nancy.

Lean On Me

Nancy with husband Ken & daughters

While Nancy’s form of MS is the most common, known as relapsing/remitting which means she will have episodes of numbness or paralysis in the extremities or problems with eyesight but then once the episode passes, she has periods of almost complete remission, the fatigue that is a common symptom of MS continues to challenge Nancy who is the consummate multi-tasker.  With three grown sons in their 20s and 30s, you would think this mom with a chronic illness was done with child-rearing.  But, seven years ago, she and second husband Ken Rickel had twin daughters which makes her roles as mother, author, jewelry designer, fund-raiser and non-profit foundation leader even more admirable.

“When I was diagnosed, there were no drugs on the market to help people with MS, now there are seven with three more being approved by the FDA,” says Nancy.  “Because of my family’s name and money, people told me to build a building, but we didn’t need a building we needed communication and solutions and we needed them fast and that is how my foundation and the Center Without Walls got started.”

As Nancy “dove into the disease” her desire to find a cure faster was all about her kids.  “I was a young mother at the time and because not much was known about MS then, all I could think about was that my freedom, my future and my ability to be a mom was going to stripped away from me – it was a very scary time,” she reveals.

She also told me that her diagnosis caused her first marriage to collapse.  “When you face a potentially devastating disease and possibly bleak future, you find out really quickly who will stand by you and who will run.”  The silver lining for Nancy was finding her second husband who she says gives her the ongoing “confidence and courage” to continue her fight for a cure and follow her other passions like her jewelry design.

Barbara Davis

Her mother Barbara, no slouch in the fund-raising ranks herself as the founder of the prestigious Carousel of Hope Ball to benefit the Barbara Davis Center for Juvenile Diabetes which for more than 30 years has been a to-die-for ticket among Los Angeles and New York VIPs, told me how proud she is of her daughter, “Nancy is tireless at working to find a cure for MS – not just for herself but also for all the people she has met who live with this unpredictable disease.”

Kathy Hilton, fashion designer, Beverly Hills society maven and mother of Paris and Nicky told me at the gala event, “We will have fun tonight – Nancy makes sure of that with the people she gathers, the music, the fashion show and the great silent and live auctions – but, come Monday, she will start working on next year’s event.  She never sits when there is work to be done.”  Kathy and her real estate tycoon husband Rick Hilton know full well the impact of MS having cared for Rick’s mom who died with MS a few years ago.

Kathy & Rick Hilton

While Nancy could tell stories about all the fabulous people she has met in her life (she lived three doors down from Elizabeth Taylor in Bel Air, her father played golf with then President Gerald Ford, her mom shoe shops with Nancy Reagan, she is godmother to Nicole Ritchie), she would rather rattle off the latest medical breakthroughs in therapies and medications to help those living with MS.  When I mentioned my closest friend suffers from MS, Nancy gently grilled me about what drugs she has tried, asking if she has thought about the alkaline diet, and does she know about this and that therapy.  It is refreshing to see a woman who could rest on her laurels of being a society princess, instead be more like Joan of Arc – a woman warrior in the fight against this chronic illness.

Her army is those famous friends who turned out for the Race to Erase event this year including music legend Stevie Wonder, American Idol winner David Cook, country and western star Clay Walker, actress Marg Helgenberger, whose father died from MS, Cybill Shepherd, LaToya Jackson, Khloe Kardashian and husband Lamar Odom and 1,000 other luminaries.  Right by Nancy’s side as co-host of the event was fashion designer Tommy Hilfiger who has been involved with the Foundation since 1997 and his brother Andy whose fashion line, Andrew Charles, was part of the evening’s show.  The Hilfiger brothers have a sister who has battled MS for over 25 years and are dedicated to the cause to find a cure.

Marg Helgenberger & Nancy

Nancy had the celebrities walk the orange carpet and when I asked her about the orange color, she said simply, “Orange is a happy color and you have to be positive when you are battling MS.”  She ends each year’s event by gathering those famous friends in a stirring rendition led by the musical giants in the classic Bill Withers song, “Lean on Me” which is also the title of her 1996 book, Lean on Me: 10 Powerful Steps to Moving Beyond Your Diagnosis and Taking Back Your Life

Nancy & Cybill Shepherd

Nancy & LaToya Jackson

“Nobody signs up for this illness,” says Nancy.  “A diagnosis of MS is not just about the person with the disease, it is about the family and you have to lean on each other to carry on.  It sounds crazy but MS has made me grateful because I appreciate my life and friends more.”

As the song’s refrain resonates from the Century Plaza Hotel’s ballroom, Nancy Davis certainly has friends she can lean on and those diagnosed with MS can lean on her knowing she won’t stop until a cure is found.

Click here to view the celebrity interviews from this event.

Sherri Snelling is writing a book on celebrity caregivers and the lessons of love and caring that will be published in January, 2013 by Balboa Press, an imprint of Hay House Publishers.