Aging, MS, and the Questions We Need Answered

When I was 22 I was in a serious car accident that landed me in the hospital with a concussion and feet that were suddenly numb. I ignored the loss of sensation.

At 27, along with increasing numbness and weakness, I had a few other troubling symptoms. I finally consulted with a neurologist who quickly diagnosed me with multiple sclerosis.

In my thirties, I had more good days than bad.

In my forties and fifties, a few comorbidities reared their ugly heads. The difficult days now outnumbered the rest.

By the time I reached 60, MS had progressed incrementally, making life more complicated and frustrating.

This is my (very) brief MS story through the decades.

MS

Why am I condensing it? To illustrate a point:

At what age did I, and others like me, cross an arbitrary line in the sand that decides when people become "older?"

This is something that's been on my mind for quite a while and I'd like your honest opinion.

I'll wait for your response.

I can't remember when I started to become aware that people of my generation, living with MS, were being excluded in one way or another:

It's a fact that most people with MS are diagnosed between the ages of 20 and 50, so it stands to reason that the public face of the disease is often young.

Yet people over 60 must  be included in a fair and equitable manner. We don't suddenly stop having MS  and we certainly never stop adding value to the world.

We're still here doing what we always did, the best way we know how!

MS

When I noticed this change I unconsciously started feeling alone and bewildered. Who could I talk to who was close to my age and understood how I felt, and did they feel the same way? Most advocates I know are younger, and were diagnosed years after I was.

As unique as MS is to each patient, our experiences of being diagnosed and the initial medical advice we received are as different as night and day.

That's not a bad thing, just different.

I grew concerned that aging wasn't being studied or discussed by the medical, research, and advocate communities. So I thought I'd do a little research to learn more.

It made sense to start my research with the first MS organization I relied on after my 1986 diagnosis, in those pre-internet days.

Using "snail mail" I'd write letters filled with questions to The National Multiple Sclerosis Society. Their responses were always kind, caring, and helpful.

So I emailed their Chief Advocacy, Services and Science Officer, Tim Coetzee. He was more than generous, bringing me up to speed on how the Society was focused on aging and MS:

"At the National MS Society we believe no one should face MS alone, and we are focused on making sure every person touched by this disease can see themselves in the MS movement. We're committed to ensuring that we bring our entire MS community together, it is representative of all the various dimensions of diversity so that everyone feels at home and supported by their National MS Society." - Tim Coetzee 

With the information Tim sent, I not only learned a great deal but I began to feel a little less alone.

It also gave me hope that future generations won't have the kind of concerns I had.

As I was writing this post I happened to come across an interesting podcast by Dr. Barry Singer on aging and MS. (Dr. Singer is Director of the MS Center for Innovations in Care in St. Louis, MO, seen above working with me on a past MS brain health initiative). I recommend tuning in as he interviews two experts on the subject.

We still have much to learn about how aging affects patients, how people can live a better quality of life as they age, and to remind the world of the importance of inclusion.  

As I continue my journey to find other MS programs and research on aging I'll be bringing them directly to you as I find them. That's a promise!

Before I go here are the links provided by Tim Coetzee on behalf of NMSS:

MS through the ages
Struggling to stay standing
My own therapy
You want to know what?
Fighting for access
Blessings in miles and meters
Speaking out
Good companions
Finding gratitude
From visual to visionary
Meet our 2020 Inspiration Award winners
Summer at home
Black women with MS speak up
Obstacles to access
Gardening with MS
Still in charge
Others like me
Roll with it

Thanks for stopping by to read this post. I'm glad to have you here! Please feel free to leave your comments or questions below. I'll get back to you as soon as possible.

Have a peace-filled day!

MS Photo Credit: NMSS

Two Exciting Pieces of News for the MS Community

Being an advocate for the multiple sclerosis community means sharing information to help you stay aware of trending topics and credible information that can help you make informed decisions about your health. By sharing this information I hope to simplify and empower you on your MS journey.

multiple sclerosis awareness

Two organizations recently reached out to me about their new initiatives that I thought you'd like to know about.

 

NATIONAL MULTIPLE SCLEROSIS SOCIETY (nmss.org)

No one plans on being met with a life-changing diagnosis like MS – but whether you’re newly diagnosed or not, we can all use a little extra support. Our friends at the National MS Society put together a wonderful new resource called “Now What? Resources to Keep You Moving Forward with MS” and you can download it for free today.

multiple sclerosis awareness

From wellness to community to understanding symptoms, this guide is great for those with MS and those supporting loved ones with MS. As the NMSS website explains:

"Whether you were recently diagnosed or are processing a shift in your disease progression, you came to the right place. With you in mind, we created Now What? Resources to Keep You Moving Forward with MS. It's your introduction to the top resources and information from the National MS Society – news you can use to keep moving forward.

There's even more to discover on our website. This guide, however, offers the latest and most relevant information about MS.

Check it out by clicking HERE !

 

HEALTHLINE (healthline.com)

multiple sclerosis awareness

Photo: Courtesy of Healthline

There's a new CBD landing page and content hub we've built at Healthline. As cannabidiol (CBD) becomes a highly discussed product touting benefits across the board, especially for those suffering from chronic illnesses, we wanted to create an extensive resource for our audience to learn about what research has proven and what we still need more information on about CBD benefits. Specifically, research on how CBD can help autoimmune disease with articles covering topics such as how human studies have found that a combination of CBD and THC is effective in treating pain related to multiple sclerosis and arthritis.

CBD is helping to change lives, so we wanted to answer all our readers' questions. We hope you'll find the landing page a useful resource. Click HERE to find out more!

♦♦♦♦♦♦♦♦♦♦♦♦

Please let me know if you have any questions or comments. I always enjoy hearing from you. Have a lovely day!

NOTE: This post does not endorse or recommend any school of thought or product. This is for informational purposes only.

 

How I Faced My Fear on the Runway and Learned a Valuable Lesson

I have wellness on my mind. My least favorite season is almost here and with it comes the frigid temperatures that forces me to stay indoors. The need to bundle up takes all the joy out of my daily walks. I miss the spontaneity of walking out my front door whenever the mood strikes, without the need to throw on a hat and coat, to stroll around my neighborhood and enjoy the colors of the other three seasons.

Winter puts a dent in my exercise regimen.

wellness

Wellness. That one word means many things. Good health, being mindful, a sense of wholeness, strength and vigor, staying in shape, feeling robust and having an overall sense of well-being.

Sometimes I stray from my wellness path. My meal portions get bigger and bigger. I talk myself out of exercising, and then work long hours on my computer without standing or taking a break.

Last week I tried staying focused on my eating habits. I shut down my laptop and cell phone to stroll around the block during the unusually mild November temperatures we had here in New Jersey.

I was in a fashion show for a charity near and dear to my heart: The National Multiple Sclerosis Society. When I was first asked I did what I always do before I'm about to step out of my comfort zone: I panicked. I went to try on dresses at a chic dress boutique where the owner was loaning apparel to all of the models. The styles I saw on display were stunning but, unfortunately, they were size 0 – 12.

Uh oh.

One designer offered a line perfect for my curvy figure. I found one that fit and looked nice. Now the question was how to accessorize. I turned to the community of midlife bloggers I’ve come to know and respect. They calmed my introverted nerves about walking down a runway in front of 300 women.

The number of responses I received, including quite a few back-and-forth notes, overwhelmed me. There were messages of advice and support that truly touched my heart.

Take a risk, flaunt your stuff, work that runway, turn on your smile and enjoy.

The audience cheered and applauded as I made my way up and down the runway. Their smiles and encouragement helped me begin to break free from my lifelong fear of standing up in front of a large audience. It felt liberating.

Wellness is also a state of mind. It's about embracing our bodies that are changing as we age. We may have wrinkles, brittle hair, dry skin, or a bit of weight gain. But we’re still vital, beautiful, sexy, bright, chic and full of confidence. No matter what our size, shape or abilities, always stand tall and be proud of who we are.

(NOTE: I’d like to thank two of my friends who were particularly kind and helpful in my time of sheer panic. They are amazing women who have successful fashion blogs you should check out: Still Blonde After All These Years by Shelley Zurek and Over 50 Feeling 40 by Pamela Luttrell.)

Wellness is always on my mind, but now even more since I went back to Jenny Craig.

wellness

My weekly one-on-one meeting with my consultant helps me stay on track. We discuss that it’s not about the number on the scale but about how we feel in our clothes and about ourselves.

This week I didn’t lose any weight. How could that be, I thought to myself?

I was good all week except at the fashion show. Arriving at the venue early in the morning (after eating a small breakfast due to nerves) I ate my packed carrots, Jenny snack bar and then waited for lunch. I waited and waited. And waited. Then I saw them. Tray after tray of delicious looking hors d'oeuvres that my stomach was growling for. My stomach talked me into devouring them.

Wellness

Jenny Craig Anytime Bars (Photo: Jenny Craig)

My Jenny Craig consultant saw the look on my face when I stepped off the scale. My clothes were fitting better so how could that number be true? She suggested we re-take my measurements.

Success! I lost 7 inches from the time I started Jenny. I’m doing a Happy Dance!

Thank you to my wonderful Jenny consultant and to Jenny Craig for providing not only delicious meals but also for helping me move forward in my plan to look and feel as best as I can.

Yup, wellness is on my mind. I put my treadmill back up so I can still take a walk on winter days. I faced another fear on the runway and stepped out of my comfort zone. I'm eating healthier, feeling better and looking forward to reaching more of my personal goals.

Happy Winter Wellness Days to you.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

DISCLOSUREI was provided a free trial program and discount on the Jenny Craig meals. As always all opinions expressed here are entirely my own.

Disclaimer: Results not typical. Members following our program lose, on average, 1-2 lbs per week

Jenny Craig just launched more than a dozen new fall foods and seasonal items and is sharing their latest offer with you! 

The new foods include, Loaded Baked Potato, Italian Style Pasta Bake, Classic Waffles, Chocolate Peppermint Cake (seasonal), Philly Cheesesteak Sandwich, Pumpkin Loaf (seasonal), Pumpkin Spice Cakes (Seasonal), Homestyle Beef Pot Roast, Classic Lasagna with Meat Sauce, Turkey & Wild Rice, Apple Crisp, Chocolate Lava Cake and the Strawberry Yogurt Anytime Bar.

You can check it all out here along with special promotions!

Why I'm Thankful For My Diagnosis

The philosopher John Lennon (or whoever said it first) famously wrote, "Life is what happens when you're busy making other plans." The life we imagine when we're young isn't always the one that we live. Our paths make sudden turns down unexpected byways, leaving us to survive unchartered territory.

March is MS Awareness Month

March is MS Awareness Month, a time to remember over 2.3 million people worldwide who are living with multiple sclerosis, an unpredictable and incurable disease. Strength, love, hope and courage - those are the words to be mindful of this month.

And, of course a cure.

As February drew to a close I couldn't decide what I'd write about to honor this important month-long event. I mean, what else could I write about MS that I haven't covered already? And what positive spin could I put on it, because that's how I choose to look at my life.

Then it dawned on me.

Why I'm thankful for my MS diagnosis

It's easy to GO ORANGE with Max!

Like Clarence the Angel granting George Bailey the ability to see what life would have been like if he'd never been born (you knew I'd think of a classic film reference, didn't you?) I wanted to write about how different my life would have been without my diagnosis.

Why I'm thankful for my MS diagnosis

I look forward to the day when I can finally say, "I used to have MS." That will be the greatest day of all. In the meantime I'll be mindful that despite my diagnosis I'm surrounded by many blessings. And, like George Bailey, I cannot be a failure because I certainly do have friends - near, far, virtual, professional and furry.

I am thankful for my diagnosis because it taught me self-compassion, survival, to remain curious and to always keep hope in my heart.

About MS Awareness Month

National MS Education and Awareness Month is an effort by the Multiple Sclerosis Foundation (MSF) and affiliated groups to raise the public's awareness of multiple sclerosis. The vital goals of this campaign are to promote an understanding of the scope of this disease, and to assist those with MS in making educated decisions about their healthcare.

To inspire others to create a world free of MS, click here to share your thoughts on The National Multiple Sclerosis Society's website.

Learn more about what MS is and find the latest research from the National Institute of Neurological Disorders and Stroke page called Hope Through Research.

 

 

 

 

How Multiple Sclerosis Patients Can Take An Active Role In Expediting Research

The beginning of a new year is a chance to wipe the slate clean and begin a new journey filled with hope and possibility. I visualize that journey as climbing a majestic mountain that rises high above the ocean. With each passing mile I get closer to accomplishing another goal. When I finally reach the pinnacle I'll feel more alive, mindful of my glorious achievements while enjoying the magnificent view that envelops me.

Multiple Sclerosis

Each step I climb represents my personal goals. And one of those goals is to continue spreading awareness about living with Multiple Sclerosis.

Reaching the top of the mountain would mean that a cure has been discovered, finally putting an end to this horrible disease.

Will I reach the top in my lifetime? I'm not clairvoyant but I always hold hope in my heart.

That is why I take part in NARCOMS (North American Research Committee on Multiple Sclerosis), a bi-annual online patient registry where I answer questions about my life with MS. I feel good knowing that I'm part of a greater good, because my answers ultimately help to facilitate multi-center research about MS.

"NARCOMS, a project of the Consortium of MS Centers, is a patient registry that was founded in 1995 and contains patient-driven information on over 37,000 patients. Information from NARCOMS has enhanced research activities regarding demographics of MS as well as environmental factors involved in disease activity (vitamin D, smoking). "~June Halper, APN-C, CEO of CMSC, Executive Director of IOMSN, MSNICB

Anyone diagnosed with MS can sign up for this free, confidential registry. Like me, the information you provide will supply valuable information that expedites research and improves clinical care and quality of life issues for patients and families affected by MS.

Multiple Sclerosis

Questions such as demographics, disease history, quality of life, functionality, and relapse and symptom progression are a sample of what you'll be asked.

NARCOMS also publishes a quarterly magazine, NARCOMS Now (free to all NARCOMS participants),that features MS news and information about the registry. The Winter 2015 edition focuses on health and wellness and is filled with interesting information. I was fortunate to be interviewed for their Feature Focus story.

 Multiple Sclerosis

Check out the NARCOMS website and sign up for their registry. While you're there take a look at the NARCOMS Now page to find the latest MS news and information, and learn about NARCOMS MS apps and photo contests. Click the PLAY tab to give your brain a workout with their word puzzles.

If you want to learn more about the purpose and participation benefits of NARCOMS, here's Dr. Daniel Kantor interviewing Dr. Gary Cutter, Director, NARCOMS Data Coordinating Center.

I hope you'll join me on my journey to the top of the mountain!

We're All On The Same Team, Aren't We?

I recently wrote a post about my journey of diagnosis and how I first came to understand the importance of body, mind and soul and if the three are in alignment our bodies move closer to better health.

team

In the world of Multiple Sclerosis there are four classifications of MS, and the "type" I have is the "best" kind. My issues are mostly invisible to the naked eye, but every day is still a struggle that I still have to manage as best as I can.

Others in the MS community don't have invisible MS.Their issues run the gamut from inability to walk or speak clearly to cognitive dysfunction and/or bowel and bladder issues. Some are forced to retire, and others rarely leave home. Their world is more difficult than mine.(You can read more about MS here on the National Multiple Sclerosis Society website.)

When I began to blog about MS I didn't know how I'd write about our disease, wondering how to be all-inclusive about every type.

I always try to do my best by keeping the entire community in mind. But as any writer knows I have to WRITE WHAT I KNOW.

team

It's impossible to be all things to all people. So I took the plunge and began following the old adage. I wrote about my life experiences, hoping that what I write will resonate with readers. Then I remembered a quote by Winston Churchill:

team

But hell hath no fury like a reader who feels scorned. After my post appeared about the benefit of the mind/body connection, I received an angry comment that went something like this:

"I am SO happy HER world works. It depends on her severity, but it doesn't sound too extreme. I'm strong and push through the pains in my world. But I can't work and sometimes I can't walk. Maybe your words will help someone. Except your sort of sounding like the cheerleader, all fit, perfect figure, great husband, kids, works out, has a wonderful job and is blessed her MS is under control from one MS medication. SERIOUSLY? Nice try drug company to use her for your prop. How much did you pay her? Does she really have MS? Yep, I've got some issues with people's happy "Oh look at me!" stories."

I was stunned and felt a little hurt. But after reading it over again (and again) I felt this person's anger. It wasn't necessarily toward me, but toward MS and her situation. Being unable to walk or work is a terrible burden to bear.

In my reply I told her that we are part of a great community and need to embrace, support and empower each other. We are on the same team and need to recognize the value in that.

team

In writing to her it reminded me of the women I've met in my online blogging community, the midlife bloggers who have become my good friends. We embrace, support and empower each other. That sense of community is powerful and has lifted me up for the past two years.

I also adore my MS community. The people I've met empower me with their constant strength and kindness, helping me to become a stronger person every day.

My hope is that the angry reader will realize that being part of a caring community is healthier than wallowing in anger. As with everything in life, being part of a team, any loving team, is better for us. Don't you agree?

Social Good: When Will You Have "Enough Time" To Make A Difference In The World?

“One life is all we have and we live it as we believe in living it. But to sacrifice what you are and to live without belief, that is a fate more terrible than dying.” ~Joan of Arc

Help Helping Life Time Social Good

I’ve often thought I’d like to live nine lives to devote to every cause that is important to me. I’ve been blessed with a good life, and because of that I feel a need to pay it forward to make a difference in the world.

My work mainly focuses on issues involving Multiple Sclerosis and the disability community. Now I’d like to spread my wings a bit further, expanding to something bigger than myself, something that has nothing whatsoever to do with my own issues.

So many causes tug at my heart that I often want to shout, "Where do I sign up?"

If I were wealthy I'd donate money to all of them.That would feel satisfying, yet it would also feel somewhat empty and incomplete. Because no matter what the cause may be, I'd want to spend my time volunteering in person.

Here are a few of the causes that have recently been tugging at my heart:

Special Needs Children: A close friend is working with horses to help children with special needs.

“Where do I sign up?”

Literacy for Young Ones: A fellow blogger is involved in a program that provides literacy to infants and toddlers.

“Where do I sign up?”

Caring for Elephants in Need: Another friend volunteered at The Elephant Sanctuary in Tennessee. “A natural refuge where sick, old and needy elephants can once again work the earth in peace and dignity.”

"Where do I sign up?”

Knitting for Infants and Toddlers in Need: A few years ago I'd knit blankets for Project Linus, an organization that provides handmade blankets for critically ill or traumatized infants and toddlers. I need to make time to knit for them again.

“Where do I sign up?”

Special Olympics: I subscribe to Maria Shriver’s online newsletter, and her latest one touched on The Special Olympics, an international organization established by her mother, Eunice Kennedy Shriver, to empower and educate people with intellectual disabilities through the power of sports. I’ve always wanted to volunteer for them but never “found the time” to get involved. I need to make the time.

“Where do I sign up?”

Animals: I’ve written many times, on my blog and elsewhere, that all animals deserve respect and unconditional love. We need to stop animal abuse and put an end to the existence of kill shelters. Let’s use our voices on behalf of our furry friends, and stop the insanity of animal abuse.

“Where else can I sign up?”

Two more organizations I have written about because I believe in their mission:

Clean Water: WaterAid, an international non-profit organization that provides access to safe, clean water in underdeveloped countries.

Bullying Prevention: PACER’s National Bullying Prevention Center raises awareness about bullying, stopping it by people taking an active role through education and outreach.

“I have never been especially impressed by the heroics of people convinced they are about to change the world. I am more awed by those who struggle to make one small difference.” ~Ellen Goodman

There are so many causes that inspire me, far too many to list here.The Utopian Society I imagined as a child - the one I still dream about today - simply doesn't exist. The next best thing? Doing something positive for the sake of others. No act is too small to make the world a better place. Do it for yourself. Do it for others. Do it to make a difference.

Which cause will I choose in order to make a difference? I'm not quite sure. But whatever it may be you can be sure that it will be something I believe in.

Where will YOU sign up?

Get Your Tickets! Madison Square Garden/New York Liberty Announces Multiple Sclerosis Awareness Night

On Sunday, August 17 at 6pm there will be a special event at Madison Square Garden in New York City. This fun and exciting program, “Multiple Sclerosis Awareness Night at Madison Square Garden”, will be taking place as the women’s professional basketball team The New York Liberty play against Indiana Fever.

Multiple Sclerosis

Photo: Ticketmaster/NY Liberty/Madison Square Garden

In partnership with The National Multiple Sclerosis Society (New York City/Southern New York Chapter), the first 30 families who purchase tickets will receive a “special fan experience during the game.”  At $15/ticket, it’s a win-win!  You’ll be watching some great basketball and supporting women’s sports while you support MS Awareness.

To purchase tickets, please go to http://tinyurl.com/MSawarenight14 and use code: Liberty.

For more information contact Morgan at (212) 631-5224 or Morgan.Taylor@msg.com

ABOUT MULTIPLE SCLEROSIS (definition provided by The Mayo Clinic):

Multiple sclerosis (MS) is a disease in which your immune system attacks the protective sheath (myelin) that covers your nerves. Myelin damage disrupts communication between your brain and the rest of your body. Ultimately, the nerves themselves may deteriorate, a process that's currently irreversible.

Signs and symptoms vary widely, depending on the amount of damage and which nerves are affected. Some people with severe MS may lose the ability to walk independently or at all, while others experience long periods of remission during which they develop no new symptoms.

There's no cure for Multiple Sclerosis. However, treatments can help speed recovery from attacks, modify the course of the disease and manage symptoms.

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Thank A Nurse This Week As We Celebrate National Nurses Week

This week is National Nurses Week (May 6 – May 12), and to honor these remarkably dedicated health professionals I’d like to take this opportunity to pay tribute to them for the difference they make in all of our lives.

National Nurses Week

The first nurse we learn about is Florence Nightingale, the founder of modern nursing, who came to prominence during the Crimean War when she began tending to wounded soldiers at night.

Today, nurses do so much more than tend to our physical needs. They care for our emotional ones as well by treating the whole person with compassion and a good ear. They not only see the patient's physical wounds, but they also see a human being with deeper needs.

In the world of today’s health care, that is no ordinary feat.

National Nurses Week

To a nurse the needs of the patient comes first despite their own grueling hours, daily physical exertion and the sharing of some traumatic events that would send anyone else to their knees.

Their goal is to make a difference in our lives.

Nurses comfort and heal us, whether nestling closely to a dying patient, hugging a scared child or listening to our worries.

Aside from the nurses who’ve cared for my own health needs, I was blessed to work with many talented ones while working at IOMSN (International Organization of Multiple Sclerosis Nurses.) Let me introduce you to a few:

Dorothea (“Dottie”) Pfohl: Clinical Coordinator of The Comprehensive MS Center of the Department of Neurology at The University of Pennsylvania Health System.

Why do I love Dottie?  Aside from being my Words with Friends warrior, she recently said this to me:

“My signature line is that I am proud to be part of a group of nurses who care FOR and ABOUT people with MS.  But, when folks suggest I am one in a million, I correct them that I am one in over 2,000 MS nurses (IOMSN) worldwide who specialize in MS nursing.”

After being an RN for 50 years, Dottie is a tireless warrior not only in Words with Friends but with every patient she meets.  She’s helped me, and countless others, with her knowledge and compassionate heart.  I will be forever grateful that she is also my friend.

Gretchen Mathewson: Specialty Coordinator, Nurse Practitioner of Neurology at The Mount Sinai Hospital, Corinne Dickinson Goldsmith Multiple Sclerosis Center, New York City.

I recently changed neurologists, which meant I also changed nurse practitioners. During a recent checkup I spent time with Gretchen, who not only gave me time to ask all of my questions, she also gave me advice unlike any other:

“Try to forget you’re disabled. Take up martial arts for balance, and go back to yoga.  Live your life without thinking of yourself as disabled.”

That’s a hard task since I write about disability, but I’m trying to separate myself between Cathy the Writer and Cathy the Healthy Woman who happens to have MS.

Michelle Keating: MS Nurse Consultant, part-time oncology nurse, Mercy Hospital (St. Louis).

What’s special about Michelle? She also has MS. Anyone with MS knows that fatigue can be our number one enemy.  But Michelle keeps moving by helping and caring for others.  As she says:

“What I love about working with those with MS is the ability to educate. To encourage, create hope and provide support for patients, and finally to inspire them to live their own lives with a positive wellness approach. 

NOTE: If you live in the St. Louis area, please check out Michelle’s upcoming fundraising event, MS Evening of Hope.

Claire Mayone is a nurse with Genzyme’s One to One Program.  A veteran of the nursing world for over 25 years, Claire decided to dedicate her skills after her husband’s MS diagnosis.  She now helps others navigate the many challenges of having an unpredictable disease.

Read more about Claire and the MS One to One program, a unique resource and program for people living with MS and their care partners. Members are provided with personal support and access to trained MS nurses over the phone or online. Visit www.MSOnetoOne.com or call 1-855-676-6326.

What positive stories do you have about nurses?

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A Call To Action: What Social Good Are You Doing This Week?

Last year I attended The Social Good Summit, a three day event held during UN Week "where big ideas meet new media to create innovative solutions."

social good

In order words, it was a place where global leaders ignited our passion to help solve the challenges of the world.

A tall order.

I was deeply moved by many of the speakers. Listening to their voices so filled with passion for causes they believed in was exciting to me, and reminded me of the call to action I wanted needed to take.  I felt physically and emotionally exhausted when I got home.

It was more than worth it.

My biggest regret was being unable to stay and listen to who I believe was (and always will be) the most dynamic, courageous and completely unforgettable person to appear at the conference, Malala Yousafzai.   She is an extraordinary human being, and if you have a minute check out Malala Fund, her organization focusing on providing education to girls in underdeveloped countries who are being denied the opportunity to go to school.

Social good encompasses a lot of territory. There is so much heartache, sadness and tragedy in the world. If I were a Kennedy or a Rockefeller I'd donate billions of dollars to charitable organizations, and purchase acres and acres of land to create reservations to house homeless animals. I'd be unstoppable in my focus to help as many people and animals as I could.

But I'm simply me.

So until I win the lottery or write a Pulitzer Prize winning book, I'll take care of my little corner of the world, one small act at a time.

Tomorrow is World Book Night, a worldwide event that celebrates William Shakespeare's birthday by shipping boxes of new books to volunteers who donate them to light or non-readers.  I am thrilled to be a part of this event, and I'll be donating 20 copies of Doris Kearns Goodwin's book, "Wait Till Next Year" to a local nursing home.  I have been a featured speaker at this particular home on behalf of The National Multiple Sclerosis Society, so I am thrilled to donate these books to such a wonderful place.

social good

In my recent post about about my visit to The Daily Show I spoke of the gifted comedian, Vince August, the warmup for Jon Stewart. I was so impressed with his talent that this past weekend Gary and I went to see Vince perform at Bananas Comedy Club in Hasbrouck Heights, New Jersey. We laughed and applauded while Vince turned his wit on parents who thought a Saturday night comedy show was the perfect place to bring their 14 year old son,  and a bunch of seniors who were brave enough to sit in the front row.

When the act was over, Vince announced he was selling t-shirts to raise money for The North Shore Animal League, a charity near and dear to my own heart.  In memory of his beloved dog, Spike, Vince chose the League because they tirelessly work to save the lives of cats and dogs by rescuing, nurturing and finding loving forever homes for over 1,000,000 innocent animals.  That night he raised $1,200.

A funny man with a heart of gold.

I believe it is our duty to do good in the world, to help those who can't help themselves.  It is our responsibility to do something - anything - to make this world a better place.

One small act at a time.

What are you doing to make the world a better place?

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Families Coping With Illness: How Our 2006 Video For A Local TV Program Is Still Relevant Today

March is Multiple Sclerosis Awareness Month, a perfect time to share a video made in 2006 to illustrate how my family was coping with my diagnosis.  I hope it will help to spread awareness about MS and disability.

In 2006 my family and I were interviewed at home for a local television program, CAUCUS: New Jersey with Steve Adubato for the segment, "Families Coping With Illness." They wanted to know the story of my MS diagnosis: how it happened, how it affected my family and how we were coping.

Multiple Sclerosis Stories

Bar Mitzvah 2006

It was three days after my son's Bar Mitzvah, and my husband and I were exhausted.  But we knew that our participation in the making of this video would be another way to educate the public not only about MS, but also how families learn to cope when one of its' members are living with a chronic illness.

March is Multiple Sclerosis Awareness Month, so I thought this was a perfect time to share this video that tells my story.

Living with MS is a story of public and private struggle

Every person with MS has their own story of public and private struggles with the disease.  It is a story unique to them, yet one with a common similarity: the hope for a cure.

Here are some stories from The National Multiple Sclerosis Society's campaign "MS Connections."  They are stories of people supporting one another, while exploring the issues that shape their world.  You can add your own story to their campaign.

Living with Multiple Sclerosis Illness

Photo Credit: National MS Society

What stories can you share about coping with a loved ones illness?

NOTE: Video provided by Caucus New Jersey, Paula M. Levine (Producer)

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Tomorrow is #GivingTuesday. What Will You Do To Give Back To The World?

I got the email.  The one in October from The Mission List asking me to join their efforts as Ambassador for #GivingTuesday.  I never responded.  As they say these days, "My bad."

Giving Tuesday

I promised myself that after I turned 50, my Second Chapter would be dedicated to paying it forward to those in need.

#GivingTuesday fit perfectly into my plan.

My life was terribly busy when I received the notice from The Mission List, and their notice blended in with all of my other emails.  I should have stopped whatever I was doing to read it, because I know that ANY email from The Mission List is an important one.

I may not be an Ambassador for The Mission List, per se, but I wholeheartedly believe in their mission of #GivingTuesday.

Family and Friends on #GivingTuesday

I give because I care about the people I love. I give because I want to make the world a better place. I give to, among others, Pancreatic Cancer Action Network, The American Cancer Society, The National Multiple Sclerosis Society, and our local police and firemen.

All I know is I want to give back, and spread that message, on the same day that thousands of others are giving back worldwide.

Tomorrow is THE day.  Tuesday, December 3 - #GivingTuesday.

Tomorrow is a call to action to "celebrate giving and encouraging more, better and smarter giving during the Holiday Season.  It's an organizing principle to encourage creativity and energy of people all over the world to work together for good."

The cats I love for #GivingTuesday

Max, Newton, Whitey and Smokey are my reasons to give to stop animal abuse, and to help find warm and loving homes for all of our furry friends. My newest charity is where Heaven is being cared for after being brutally abused - NJ SPCA (www.njspca.org) They are doing G-d's work and are in need of donations.

For me, giving back has always been a very personal experience.  The organizations I donate my time and effort to are organizations that have touched my life in some way.  There are also organizations whose work and dedication for a cause has touched my heart.

Let's all put philanthropy back into the giving season.  The whole idea is about ordinary people doing extraordinary things, one person at a time. United, we can make the world a better place.  We can make a difference.

FYI: In case you are interested, this is how the idea of #GivingTuesday began:

 

What will you do on #GivingTuesday? Leave a comment here, or spread the word through social media.  Let's take a step forward by giving something wonderful to one another.

GivingTues

American Cancer Society

American Cancer Society (Photo credit: Wikipedia)

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