Aging with MS and How YOU Can Manage Your Journey

When my neurologist diagnosed my MS over three decades ago my parents urged me to get a second opinion. I agreed wholeheartedly.

The second neurologist, who came highly recommended, quickly confirmed the diagnosis, then casually added:

"On average people with MS live seven years less than the general population.

I thought my head would explode...from the diagnosis, the doctor's (ahem) bedside manner, and the mic drop about MS and mortality. Jeez.

aging with MS

With limited information at my disposal in those pre-internet days, I was desperate to research credible information to validate (or invalidate) the doctor's opinions as well as the many other "truths" people felt compelled to tell me.

Knowledge and self-advocacy are power.

I made a pact in those early days to educate myself and those in the MS community with absolute truths about the disease.

We deserve nothing less. 

So here's part two of my series on AGING AND MS. (In case you missed part one please click here.)

I'm sharing another leading resource I rely on for outstanding support and services.

The Multiple Sclerosis Association of America

Since 1970 this nonprofit organization has lived up to its tagline "improving lives today."

I highly recommend perusing their website to learn more about what MSAA can do for YOU.

aging with MS

Over the years I've gotten to know the President and CEO of MSAA, Gina Murdoch. Leading with compassion and commitment to the MS community, Gina graciously agreed to answer a few questions about aging and MS.  

WAIT! STOP!

aging with MS

Don't turn away because you think, "I'm not 50 yet so this doesn't apply to me."

It certainly does. If not today then someday. Do yourself a favor and keep reading. Some of the links below might even help you RIGHT NOW.

I promise it's worth your time to keep reading.

aging with MS

Let's begin with a quote from Gina Murdoch about aging and MS:

"The MS journey has many challenges and aging with MS is certainly one of them."

Cathy: How has MSAA included the over 50 demographic?

Gina: All of MSAA's programs, core services, and initiatives are available to help those living with MS wherever they are on their MS journey. MSAA's programs and services are inclusive of those living with MS over the age of 50, and specifically include:

MSAA's Helpline:

MSAA provides a toll-free Helpline and Chat that enables individuals with MS, family members, care partners, and friends to speak directly with one of MSAA's experienced specialists. MSAA's Helpline routinely assists those seeking help on topics related to aging and MS.

MSAA's Equipment & Cooling Distribution Programs:

MSAA's Equipment & Cooling Distribution Programs offer products for individuals who need cooling equipment or devices designed to improve safety, mobility, exercise, and daily living capacity.

MSAA MRI Access Program:

The MRI Access Program assists with the payment of cranial (brain) and c-spine MRI scans for qualified individuals who have no medical insurance or cannot afford their insurance costs and require an MRI to evaluate current MS disease progression.

MSAA's Educational Resources:

MSAA's educational programs cover an array of topics featuring leading MS healthcare professionals and include issues that impact individuals living with MS over the age of 50.

Some recent highlights that specifically address aging with MS include:

* * Community Views: Aging Fears with MS (a blog post by MultipleSclerosis.net posted on MSAA's MS Conversations blog - 3/30/2022)

** Ask the Expert - MRI, and MS (4/29/2022)

Dr. Barry Hendin answers questions from the MS community and refers to the need for MRIs as MS patient ages.

** Playing the Cards I'm Dealt (3/14/2022)

Blogger Stacie Prada discusses a look back on her diagnosis and life since that pivotal point in time.

**Ask the Doctor: Questions from our readers

Dr. Hendin addresses age-related questions from the MS community.

Ongoing and future initiatives:

MSAA is currently partnering on research and educational initiatives relating to menopause and MS and is looking to address the issue of aging with MS in a future issue of The Motivator magazine.

My thanks to Gina Murdoch and MSAA for the very fine work they do for our community.

NOTE: Since I mentioned MS and longevity at the start of this post here's some information I gathered for you on the subject. I know this isn't the happiest of topics but please keep in mind that statistics can't possibly measure our unique MS situations. Be sure to check out the links below to Gavin Giovanonni's and Dr. Hendin's articles:

I hope you enjoyed this post. Please feel free to leave any comments or questions below. I truly enjoy hearing from you! 

When Beauty and the Beast Collide

The BEAST that's lived in my body for more than half of my life started to erupt over the last few years in unsettling and disruptive ways.  The odd thing is that, for the first time in my MS life, I'm experiencing the denial phase that typically begins after a diagnosis.

It's been a wake-up call to come face-to-face with the harsh reality of MS, possible progression, and aging.

Life never follows a straight line.

When I first learned I had MS I hadn't a clue what was in store for me, the unexpected detours and undeniable disappointments that could lie ahead.

When you're young, and there's no internet to provide millions of reasons to worry about your future, you think you're invincible despite a medical condition.

What probably saved me from any mental hiccups was my fertile imagination, and the ability to jump into a daydream whenever I needed an escape.

Real-life problems were something that happened to others. I felt safe and healthy inside my self-created cocoon.

Ah, youth. 

I was fortunate to have two loves I could lean on for support.

One was an obsession with black and white films. Their Hollywood happy endings and bigger-than-life actors provided me with a haven. They'd transport me to places I never wanted to leave.

James Stewart, Cary Grant, and Katharine Hepburn in "The Philadelphia Story"

The second love was immersing myself in nature, spending hours and hours in the natural world of animals and plants.

Growing up in a home surrounded by woods I fell in love with the nighttime sound of crickets, watching the change of seasons, and the perfection of wildlife outside my door.

Nature taught me crucial lessons that still serve me well:

Classic films and the natural world are like old reliable friends who always have your back.

I wish I could bottle them as a panacea for the world's problems.

"If there's a single lesson that life teaches us, it's that wishing doesn't make it so."  ~Lev Grossman, The Magician

Life with MS

As I look back at my younger self, a wide-eyed twenty-something living with a disease, I realize how much I've changed.

Time has taught me the value of setting boundaries, ending toxic relationships, accepting truths, traveling through grief and pain, and struggling with the loneliness that comes with chronic illness.

It's a gut punch being unable to keep up with the rest of the world.

As a teenager, I felt a kinship with Henry David Thoreau after reading "Walden" about simple living in natural surroundings. He wrote his "life in the woods" while living in a cabin he built near Walden Pond in Massachusetts.

I'd kiss Thoreau on the cheek if I could thank him for all he's meant to me.

"Although truth can be found in literature, it can also be found in nature." ~ Henry David Thoreau

Living with MS has never been easy but as I passed my sixtieth birthday, and felt overwhelming personal and physical changes, I saw life through a clearer lens.

Like a butterfly emerging from a cocoon,  my metamorphosis was eye-opening and deeply challenging.

"Life is a succession of lessons which must be lived to be understood." ~Helen Keller

Life with MS

The BEAST of MS can be painful, unpredictable, and disturbing.

As hard as it is I still believe there's a silver lining to any situation if you look for it. What was mine?

The silver lining was realizing it was about time to start preparing for the inevitability of life's ups and downs. I decided to begin by:

Devoting myself to the list below is something that's within my control.

Now that's a silver lining!

(NOTE: I have no affiliation of any kind with the links below. I provide them for your enjoyment and hope you'll take the time to explore them for yourself) :

Inner Timer app
Cory Muscara 
Mindfulness.com app
Tapping
The Tapping Solution app
Chair yoga
Cornell Lab Bird Cam - Talk about a calming experience! Watch LIVE cams from around the world for "a virtual window into the natural world of birds." (We watch these on YouTube)

Here's when BEAUTY and the BEAST collide!

With so much going on in our lives my wonderful husband instinctively knew how to lift my spirits. After 34 years of marriage, we can read each other's hearts.

He took me on a trip to the New York Botanical Gardens and their gorgeous (a/k/a BEAUTYorchid show!

It was absolutely ah-may-zing. A completely magical day.

The BEAUTY was in the flowers, and the love, that I felt that day. I will never forget how special it made me feel.

Find something big, small, or anything in between that puts a smile on your face. Whatever it is it's what's right for YOU.

You. Deserve. Something. Special. Today. And. Always.

MS is only a part of who we are. Sprinkle the rest of your life with love and laughter.   

We are in this together. 

Now on with the show! Sit back and drink in these beauties that I posted just for you.


Life with MS

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

I'm Participating in a Health Study on Aging and Disability - Want to Join Me?

Aging and disability are topics of particular interest to me. Ageism for those living with a chronic illness is (unfortunately) alive and well. I believe I've been turned down for projects because of my age. They view me as too old, which is utter nonsense because I'm still vibrant, experienced, knowledgeable and professionally active.

My demographic, people age 50 and up, face discrimination on a regular basis whether it's in healthcare, qualifying for clinical trials, or in the workplace.

That is why I signed up to participate in a six-month wellness study on aging and physical disability being conducted by the Department of Rehabilitation Medicine at the University of Washington. It's an easy and important way to use your voice to educate others on aging with MS and other medical conditions.

If you're age 45 - 64 and are diagnosed with any medical condition (such as Muscular Dystrophy, Amputation, Spinal Cord Injury, CMT, Multiple Sclerosis, etc) I urge you to sign up by calling 1-866-928-2114 or emailing communityhealthstudy@uw.ed

See below for more details

Thanks to MS Views and News for alerting me to this study. If you haven't subscribed to the MSVN newsletter click here. It's filled with essential information for the entire MS community.

 

aging

 

When Rejection Stings What Do You Do? Change The Rules

I’ve been fortunate to have my work published on my fair share of websites. A few of them focused on my midlife journey, yet the bulk were health-related. The reason is simple: I’ve lived with Multiple Sclerosis for more than half of my life and that’s where my expertise lies.

change

I offer hope and inspiration to those living with a chronic illness to help them understand that they, too, can live a joyful and passionate life.  

But I never want to be defined as a disabled woman. I want to be thought of as a woman who happens to have a disability. I’ll go one step further. I’d rather people see me as a resilient, intelligent, joyful, compassionate, kind, curious seeker-of-truth who happens to have a few misaligned lesions but continues to live a life of passion and purpose within her abilities.

When I began to blog in 2011 I had no intention of writing only about Multiple Sclerosis. Don’t get me wrong. I love the MS community and I dedicate my life toward helping that community. Ability despite disability. That’s my mantra.  

But I’m multidimensional; there’s so much more to me than my disease.  

Sometimes I don’t think people see the whole picture of who I am and what I have to offer. Maybe it’s because I’m a quiet person with a soft speaking voice. Or maybe it’s because I smile a lot whether or not I’m feeling well.

So if the loudest voice in the room seems to win then I better step up my game.

Lately I’ve been feeling the sting of rejection. Oh, sure, everyone gets rejected once in awhile, and writers must learn that rejection is part of the game. We’re not everyone’s flavor and when we’re not we pick up the pieces and move on.  

But I’m talking about a different kind of rejection. Because when you write about disability or disease you’re always teetering on the precipice of having people wince at what you’re talking about or being sincerely interested in what you have to say.

We cannot publish your piece at this time. We are not interested in this subject. We are not planning on having speakers for your subject at this time. Perhaps you might find another publication, another event, another website that is more suitable for your story.

Disability is not a sexy subject. You’re not giving advice on fashion after 50, makeup tips on creating a youthful look or what to do after the kids leave the nest. You’re different and the audience knows it. And while all of these subjects are popular and add value to those in midlife they are not the complete picture of what we should be talking about.

Let’s talk facts:

According to data from the April 2014 Census Bureau there are 7.6 million baby boomers in the United States, people like me who were born between 1949 and 1964. In addition, according to the U.S. Census Bureau Survey of Income and Program Participation of 1992, an estimated 48.9 million people have a severe disability and 34.2 million have a functional limitation.

So I wonder what exactly is more suitable than talking about disability, ability and aging to a growing population that’s either disabled or aging or both?  I’m asking you because I’d really like to know. Please educate me.

Talking about what it’s like to live with Multiple Sclerosis, and all the issues that follow it - diet, exercise, health insurance, support systems, financial aid, medications, medical support, a sense of community and complementary medicine - are all issues that are applicable to every disease and to the general population.

Take the word Multiple Sclerosis out of the last sentence and replace it with cancer, arthritis, heart disease or aging and every subject from diet through complementary medicine is necessary when discussing a wellness plan.  

We can’t escape aging or illness. So let’s face up to it.

So please, again, tell me why disability isn’t sexy enough to matter?  

I’ll tell you what I think. I think disability is largely misunderstood, and when people don’t understand something they shy away from it.  

The bottom line is disability doesn’t sell copy. It doesn’t gather large audiences.  It doesn’t get media attention and only garners the kind of sympathy we don’t want or need. Other than at health-related events, event planners shy away from speakers discussing disability.

But here’s what I can’t figure out. If this is all true then why are the most popular posts I’ve written for my blog and The Huffington Post about MS? One of my posts received 2.6K views in 3 days! Someone, somewhere, somehow is very interested in what I have to say about our MS community.

So what’s going on? Is disability sexy? I can only deduce the following:

I’ve seen great changes in the past 30 years, since my diagnosis, for the disability community such as The Americans with Disabilities Act, The Fair Housing Act, Air Carrier Access Act, The Voting Accessibility for the Elderly and Handicapped Act and the Individuals with Disabilities Education Act, to name a few.

I want to continue changing the stigma attached to disability. I want to crash through that imagined glass ceiling, smashing it into smithereens, the same ceiling that others began to break through. I want to add my unique voice to the conversation so I can fly high above the shattered pieces of glass. I don’t want to stand on the sidelines anymore. I want to be put into the game.

Just watch me.

 

 

 

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