Tag Archives: Multiple Sclerosis Awareness

Honoring Mothers Living with MS

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Motherhood.

        It requires strength, patience, tolerance, common sense, devotion, and countless other skills and virtues. It’s hard, demanding, never ending. It is the hardest job in the world.

Living with MS

    It requires strength, patience, tolerance, common sense, perseverance, and countless other skills and virtues. It’s hard, demanding, never ending.  It makes the hardest job in the world extra hard.

I know because I am a mother living with MS. Unconditional love despite the challenges. it’s good to focus on how it’s built our character, and how that character is transformed.

I honor all mothers this Mother’s Day, especially those living with MS! 😀

 

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

 

Is it Our Right to Die?

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Right to Die has been a sensitive subject and debated for decades. Some older folks like me  may remember names like the Hemlock Society and Dr. Jack  Kevorkian. It’s been considered taboo and carries a stigma.

People have debated the personal choices about their body for just as long—suicide, abortion, medications, dying, etc. Living with advanced MS, and aging, forces someone to think about the right to live or die for different reasons and in different ways.

An article  about Multiple Sclerosis and the Right to Die  was just posted by MultipleSclerosis.net, an online Health-Union community. Kudos to the writer and the administration for allowing this article to be shared. The article explains Right to Die from the perspective of an MS patient, whose quality of life becomes severely diminished due to pain and other physical, mental, and emotional limitations.

Add in self-dignity and humility. I have been traumatized too many times to count from the loss of my bladder and bowels in public. Even when hospitalized, having a nurse clean up after an accident in bed is humiliating. I could write another book on this subject alone.

Many comments were quickly added to support and share the words written. I added this partial comment in response to the article to point out other thought-provoking reasons:

I agree whole-heartedly with the comments made so far. I would like to add there are additional reasons a patient may desire assisted suicide beyond their (no) quality of life. It’s personal, but I feel compelled to share this.

I am currently involved in my 90-year-old mother’s dire health situation.  She fell In January, broke some ribs, and was erroneously given a pain med that caused an horrific adverse drug reaction with another med she was taking.  It left her in a condition requiring 24-hr. in-home care for two months.  Being the only sibling living in AZ, I recently arranged to transfer her to a senior care facility for her benefit and that of my 90-yr. old stepdad.  It’s a physical, emotional, mental, and financial nightmare for us all, and her future is not in her hands.  Last week, I sat down with my husband to say I don’t ever want to put him and my son through this.  While I’m too old to advocate for right to die, I plan on writing about it on my own.

It is heartbreaking, gut-wrenching when someone you love is telling you how terrible they feel and begging for help; and the only thing you can do is hold their hand and be there with them.  Yes, there is end-of-life care nowadays, but it isn’t always the best path for everyone.

Maybe it should be phrased, “The Right to Choose to Die”.

The Hemlock Society’s motto was “Good Life-Good Death”.  For some, yes; for too many others, no.

What is your reaction or thoughts about this?

*************

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

What Do You Do All Day?

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March 15, 2022

My occupation is now “retired” after being on long-term disability for years.  Child rearing is over. From time to time, the question surfaces, “What do you do all day?”

Now that’s one of those questions that can be tricky to answer, like the question, “How do you feel?”  It depends on who’s asking and what mood you’re currently in.  It’s
a judgment call.

If it’s a casual acquaintance, I give them a few of the basics: I rest intermittently, exercise or swim, read, write, and volunteer when I can.  One of those subjects will usually switch the conversation toward another direction.  There is no sense in getting into the details of what a typical day is really like; it would probably make them uncomfortable, speechless, and sorry they asked.

Besides, everyone throughout their life has something of their own to deal with. Or, getting too specific about what I do can lead into unwanted conversation.  For example, there are the people who want to give advice about all kinds of things, which can get annoying if they really do not understand MS.  And then there are the “one-uppers”; who are more interested telling a personal story that is far worse than your situation.

But occasionally, someone asks me that question in a way with a certain tone that will get a rise out of me.  “So, what do you do all day?”   Even when I used a cane, then a walker, and now a wheelchair; I usually “look so good” and am smiling and perky.  I keep busy, rarely complaining.  It’s like they’re wondering why I got disability from the government or why I don’t want to go out somewhere.

Like most people with MS, I do things on my own as much as possible and strive to maintain independence. But that sometimes can backfire on me. It conveys a message that “I can do it; all is well…” Then if superwoman starts to fall apart, I’m asked “What’s wrong with you?”

We folks with MS endure invisible things like the fatigue, depression, numbness, and weakness that make life complicated.  It doesn’t matter whether we are in a wheelchair or not. We have kids and grandkids, chores to do, errands to run, households to maintain, finances to manage.  Life without a chronic illness is challenging enough.  Throw in MS and the time and energy it takes to do a task double or triples. Often, many things get done differently, partly, or not at all.

But how do you explain all this?  Should you try?  Do they really want to know?  If you think so, maybe take the opportunity to say, “not as much as I’d like, I can use some help.” Or is it easier to just say one thing, and then ask in return “What do you do all day?”

Again, it’s a judgement call.

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

 

Living with MS is a B.I.T.C.H.

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March 8, 2022

There. I said it. I’m letting my hair down today. And I want to make everyone aware of it during this “March is MS Awareness Month”.

This post is easy to write, because I’m having a bad day.

Whether a diagnosed case of MS is mild, moderate, or advanced, living with it over time is

  • Baffling: by what is causing what; how long something will last; how bad will it                      get…
  • Interfering: with things I try to do, say, feel, think, see…
  • Thieving: of my job/finances, my time, my libido, self-esteem, dignity, abilities…
  • Controlling: of my decisions, my activities, my social life, my emotions
  • Humiliating: as I stumble, sway, lose control of my bladder/bowels, get                                        confused…

While there still is not a cure, I’m still hanging onto hope. Tomorrow is another day. Another chance that it will be an easier day.

P.S. I’m wearing my orange ribbon next to the blue/yellow ribbon (for Ukraine). It raises awareness, and questions.

 

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

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March is MS Awareness Month

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March 1, 2022

GET INVOLVED!!

Do you have multiple sclerosis? Someone you know have MS? Involved with MS associations? Have MS patients in your profession?. YOU are needed to spread the word this month.

Too many people are still unaware of what life with MS is about. That’s because those of us living with it:

  • Have “invisible” symptoms, like fatigue, muscle weakness, impaired vision, neuropathy, cognitive difficulties…
  • Don’t frequently talk or complain about it for variety of reasons e.g., employment concerns, fear of upsetting family members…
  • Find it difficult to explain to others.

Once again, it’s important to take the opportunity to collectively increase MS awareness and understanding of it.

How?

  1. Read my MS Blog article that includes a quick summary of “What is MS” and pass it out.  https://blog.debbiems.com/?p=113
  2. Orange is the color that stands for MS. You can simply wear an orange ribbon every day on your lapel/shirt, in your hair, on your purse…or you can tie an orange ribbon on your car or put one on your house!
  3. Want to do more? Organize something as a team for an MS event coming up. Watch this fun video to see what we did at the Arizona Chapter of the National MS Society some years ago http://bit.ly/YJxleg .

You can start today just by sharing this post!

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

 

An MS Journey

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“A Picture of Health on the Outside”

I was only 25 in 1980 when my MS symptoms started. My career was taking off, I was newly married, and my husband and I were active outdoors doing things like skiing and dirt bike riding. Life was good. But like all newly-diagnosed people with MS, the fear of having the rest of my life ahead of me with a chronic, debilitating, progressive disease with no cure was frightening to say the least.

What kind of life could I expect?

Flash forward to present day, 35 years later. Life has been good despite the challenges of living with MS while also dealing with other challenges in life that “normal” people endure. Adjustments to changes in my life seemed constant, as my MS Blogger Buddy Nicole Lemelle would say, would become “My New Normal.” And I’m currently facing two more…

Truthfully, I hate MS—it’s interfering, unpredictable, and invisible in so many ways. I didn’t have a choice about getting it, but I did have a choice about whether I was going to let it control me or manage my life. It took time, but I learned to manage my MS well. It helped that I am a positive person with an “I can do this” attitude.

Difficult decisions had to be made—giving up my career, having only one child, going on disability, having to move out of my house… It was hard. But amazingly for me, in the end each difficult decision resulted in a good outcome.

I can honestly say that I have, and will continue to have a fulfilling  life with my husband of thirty-seven years and my 32-year old son. Not only have I been an avid swimmer, crafter, and reader for as long as I can remember, my love of history and nature was satisfied after visiting all fifty States, seven countries in Europe, Canada, Mexico and the Caribbean. Many of these trips I made in a wheelchair.

As I journeyed through motherhood, I enjoyed being a soccer mom, wrestling mom, homeroom mother, and a volunteer in my son’s school, church and community. In-between, I learned Spanish and tutored high-schoolers for fifteen years. And I was involved as a volunteer and in other roles in the MS community for the past thirty years. I’m proud to say I authored a book, Managing MS: Straight-Talk…  published in January 2012, and since then learned social media and built a website through which I have interacted within the MS community since.

I have always practiced health and wellness as a critical component of managing my MS and chose my medications carefully. Good sleep, regular fitness, healthy diet choices, stress management… Recently at my annual physical, my doctor said to me “I have good news and I have bad news.”

The good news? Out of all her patients that day, I was the healthiest– perfect scores on all my tests: blood pressure, weight, cholesterol, pulse, circulation, Vitamin D, calcium, and all the other things that are measured when blood is checked.

The bad news? I have severe osteoporosis in my hips and osteopenia in my spine—the worse she has ever seen. I had most of the risk factors for it: genetics, years of steroids, being thin, post-menopausal, and little weight-bearing fitness due to being in a wheelchair for fifteen years. The first of two new adjustments that I have to research and work on. This is serious stuff.

When you look at that picture of me, it is a definite portrayal of that old expression that makes all of us with MS cringe: “But you look so good!” You can’t see the osteoporosis, just like you can’t see so many of my MS symptoms. Though I use a scooter or wheelchair because I can’t walk anymore, many folks have asked me if I had an accident. They can’t see the pain, the numbness, weakness, the bladder/bowel problems, or the fatigue and emotional issues that I live with daily.

And now that the new ridiculous TV commercial about Tecfidera is airing, people are getting the misconception that there is a pill—a cure—that Relapsing/Remitting MSers can take that will give them the ability to be active and normal all day long. What a hurtful setback for me and all of the other MS patients that have been trying so hard to get people to understand what MS really is all about.

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                                                     Shame on you, Biogen.

I don’t know. At first I thought that no awareness was better than misleading awareness, but maybe this commercial will stir up the pot and get people talking more about MS.

 

Throughout my entire life, I have always been a doer and a helper with some purpose to serve. Even in the toughest spells throughout my life due to MS or something else, I forged forward to reach out. However, I’ve reached the point where I’m so tired and I hurt almost all the time now. I have been wrestling with this question for a while, “Is it time to quit?” That means the second, big adjustment into unknown territory—true retirement.

 

Actually, I won’t let go of everything completely; I will share and care about MS on a limited basis through my social media sites. But I’ll let the MS blogging be carried on by great, credible others that I got the privilege of knowing from social media and attendance to a MS Blogger Summit sponsored by EMD-Serono/Pfizer:

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MS Bloggers and some Significant-Other Caretakers

   (Sitting, L to R)
Laura Kolaczkowski
Lisa Emrich
Nicole Lemelle,
Lisa Dasis
Yvonne Desousa
Debbie Petrina
(Standing, L to R)
Jon Chandonnet
David Lyons
Stuart Schlossman
Dave Bexfield

There are other great MS bloggers around too, such as those on Multiple Sclerosis.net, that can be trusted to obtain quality MS info, inspiration and education.

Living with MS for 35 years and being involved with the MS community in so many ways teaches a person a lot of things. This is the last page of my practical MS guide book Managing MS: Straight Talk From a 31-Year Survivor that I published in January 2012:

Final Words of Inspiration

September 28, 2011

Life is precious, challenging, and worth getting out of it what you can.
Being a lover of American history, one of the items on my bucket list was to visit the actual trail of the Lewis & Clark expedition. I just returned from an RV road trip with my husband and brother to do this. During the trip, I reflected on the similarities of their journey and life with MS.

When Lewis & Clark began their journey to the Pacific Ocean across the continent, they went into unknown territory. Daily they encountered obstacles in the wilderness they had to overcome, and had to rely heavily on the support of each other/ strangers, their skills, ingenuity, and creativity in order to survive and prevail. The team of thirty-three persons suffered; one died. They experimented. They documented. They learned. They managed and accomplished incredible hardships. There were moments of the deep despair and defeat, and moments of high joy and success.

They found their way. I found my way. You will find your way.

                                                                                       Debbie

www.DebbieMS.com 
Author, MS Counselor/Consultant

 

*Image courtesy of “rakratchada torsap” portfolio at Free DigitalPhotos.net

Is This How You Feel?

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Confused? Afraid? Newly diagnosed? Think you or someone you know might have MS but don’t know where to start? Weird things going on with your body and you don’t know what to do? Your neurologist is not helpful or available? Are you lost in mounds of info?  I was in these shoes once a long time ago.

Since I have lived with MS since 1980 and have been involved with the MS Community for nearly four decades, I know this disease inside and out. Seeing a great need to have a lot of credible “What-to-know—What to Do” MS information all in one place, I rolled up my sleeves and have been hard at work to help.

Managing MS a simplified, practical, all-in-one self-help guide for managing and understanding MS. I authored and dedicated this book to my MS peers to help them and their loved ones live with this invisible, unpredictable, disabling disease. Within hours, the reader will gain knowledge and support so that action can be taken enabling better control. There are many books about multiple sclerosis but I like to point out these things about mine:

• I felt it crucial to make it an easy read using a tone, words and expressions that would enable the reader to feel comfortable. Like I am talking at the kitchen table with them. Living with MS is frightening; one of my objectives was to help reduce the fear.

• Living with MS is not easy and is very complicated in many ways: the symptoms, the treatments, the medical professionals, relationships with people, the emotions, and the advancing disabilities. Thus, another objective of mine was to offer guidance and tips for managing these things in a manner that is easy to understand—like an instruction manual. I strived to make it compact, informative, and inspiring.

• This guidebook is a collaboration of both my experiences and those with peers, MS bloggers, professionals, and others that I interacted with about MS in for decades.  It was read and endorsed by health care professionals in different fields that I believe lends credibility: an MS specialist neurologist, an internist, a MS physical therapist, nurses, dietitian.

Who should read this book? Anyone who might have MS, has been diagnosed with MS, family, friends, or people who deal with MS patients such as doctors/healthcare personnel.

Diane Perry, NPC,  Consultants in Internal Medicine in Glendale stated:
“As a nurse practitioner, the book opened my eyes to the effects of the disease on my patients’ lives and their needs. This is not a textbook read.”

Carol Daily, CRNP MSN, [PwMS] in her review said “This book should be given to every person having MS, I encourage any MS organization, medical staff, family or friend to do so and to read it also, especially the medical staff, (so you guys can give better advice).”

I counsel, write, research, and advocate awareness/education of MS through my website and other social media. Continuously. This is my purpose in life,

Please go to my website, check it all out, and decide for yourself. If you do read Managing MS, make sure to tell me what you think in a review or an email through my website.

 

Debbie Petrina
Author of (2nd Edition) Managing MS 
Moderator, MultipleSclerosis.net 

 

 

 

Kristie Salerno Kent’s New Memoir “Dreams”

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“My Journey with Multiple Sclerosis”

December 10, 2013

Kristie Salerno Kent is a singer, songwriter, producer, wife and mom. At the prime of her life, she is gorgeous, successful and now an author of a book. To look at her or listen to her, you would say she is lucky. But she will tell you that at one time in her life she didn’t feel lucky. Kristie has MS.

In her new memoir, “Dreams: My Journey with Multiple Sclerosis”, Kristie travels full circle as she talks about her dreams before her MS began, how her life and dreams became disrupted with her MS diagnosis/progression, and how she overcame the disruption through her music to once again dream and fulfill her life. Kristie feels blessed.

As Kristie openly tells her story, she takes us through her steps of the grieving process that one goes through when diagnosed with a chronic illness: denial, depression, anger and finally acceptance. Within the context of own experience, she specifically incorporates details of the challenges one faces with MS—the invisible, unpredictable and interfering symptoms—that create confusion, limitations and fear since there is no cure. Am I imagining this? What should I do? Where should I go? Who shall I tell and what do I say? How can I make this better?

She experiences the other severe implications of MS like fatigue and heat, and how they significantly impact even the smallest tasks. How can you explain these things to someone and help them understand the disturbances they cause when on the outside “you look so good?”  Kristie will tell you about this.

As the years go on in her life, she also tells about the adjustments, changes and choices she made to move forward in her life while never losing hope. Kristie writes in a fashion that is engrossing, easy to understand, and inspiring. One main message in “Dreams” is hope. Hope for herself. Her hope to help others understand the complications of living with MS. And hope that despite having MS, one can continue to pursue dreams.

When Kristie overcame her denial and depression, she wrote and produced her first album, “Believe.” She wants others to believe in themselves to fulfill their dreams despite difficult challenges that life can cause them. Kristie also produced an award-winning documentary, “The Show Must Go On,” to explain the symptoms of MS (http://www.youtube.com/watch?v=6oraM8IF2Gc). Now a mom of two small children, Kristie is a paid spokesperson for Acorda Therapeutics and travels across the U.S. to advocate for people living with MS.

The holiday season is meaningful. Starting with Thanksgiving, it is a time to be thankful for what you have and can do. Christmas and its sister holidays are a time of peace, joy, love and giving. With the New Year comes hope, new dreams, and reflection.

So if you want to read a book that packages all those things together, read Kristie Salerno Kent’s “Dreams: My Journey with Multiple Sclerosis,” available through a free (yes—free!!) download at www.DreamsTheEBook.com.

You will learn, relate, and walk away feeling inspired. I certainly did! And tell your family and friends about it, too. The more people both with and without MS understand this neurological disorder, the better off we will all be. 🙂

www.DebbieMS.com

March is MS Awareness/Education Month

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“Get Involved”

March 4, 2013

YOU are needed to get involved if: you have Multiple Sclerosis, someone you know has MS, are involved with MS associations, or have MS patients in your profession.

Why? Watch this video about my orange ribbon campaign http://bit.ly/YPI1Kq

How? It’s very simple. Read my MS Blog article that includes a quick summary of “What is MS” https://blog.debbiems.com/?p=113 

Orange is the color that stands for MS. You can simply wear an orange ribbon every day on your lapel/shirt, in your hair, on your purse…….or you can tie an orange ribbon on your car or put one on your house!

Want to do more? Organize something as a team. Watch this fun video to see what we did at the Arizona Chapter of the National MS Society http://bit.ly/YJxleg  .

Please start today!

www.DebbieMS.com

Multiple Sclerosis: What EVERYONE Needs to Know

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“People just don’t know about it.”

October 22, 2012

There are two things many people say that irks those of us that have Multiple Sclerosis:

  1. “It’s that Jerry Lewis thing, isn’t it?”
  2. “But you look so good!”

No, it’s NOT that Jerry Lewis thing.  Jerry Lewis represents MD—Muscular Dystrophy.  MS stands for Multiple Sclerosis. Two extremely different disorders.  As we MSers talk to each other, we get discouraged that MD has had a national figure representing and fundraising for them.  We wish we had a national well-known person that could do the same thing for multiple sclerosis. 

So many people are not aware of MS.

Nor do they understand it.

If people really understood MS, they would know not to say “But you look so good!”  We would like to respond back “Thanks, but we sure don’t feel as good as we look!”  Why?  Because multiple sclerosis is largely an invisible disorder.  People automatically associate MS with walking problems and wheelchairs.

Being a disease of the central nervous system, potentially anything controlled by the CNS can be affected:  sensory functions, sight, cognitive/emotional functions—in addition to motor functions. These MS symptoms are not only invisible; they are extremely common and very disabling. Some examples include fatigue, weakness, bladder/bowel/sexual problems, numbness and tingling sensations, loss of sensation, balance/coordination issues, loss of vision, pain, dizziness, depression; the list is enormous.

Someone who understands MS would also know the detrimental effect any type of heat has on a MSer, whether it’s from the temperature, a fever, the time of day or a hot flash.  Or that staggered walking is not from too many drinks, but rather from a loss of balance/coordination due to damage in the brain.

Also, since many symptoms are invisible, many people do not realize that someone may have MS.  Or, because they don’t see a cane, brace, or other disability device, it is assumed that a MSer is okay.  It is hurtful to get dirty looks and remarks when a “normal-looking” person with MS gets out of the car in a handicapped space; their ability to walk before their legs start to wobble may be just ten minutes or 100 steps.

So, both awareness and understanding are needed.  To survive MS, we need a tremendous amount of support, not only from our friends and family, but from everybody.  Physical, mental, emotional and financial support.  Support for us individually due the difficulties and disabilities we live with; and support for the MS community as a whole financially–to fund research for curing MS, preventing MS, and restoring lost function due to its damaging effects.

I started an Orange Ribbon campaign recently with the Arizona Chapter of the National Multiple Sclerosis Society.  We MSers and some of our friends and families have just about finished 5,500 orange ribbon pins that represent multiple sclerosis (like the pink ones that stand for breast cancer).  Our goal is to have them ready for distribution at the Phoenix MS Walk on November 3rd.

We want to create more awareness, and when strangers ask us “what’s that orange ribbon for?” we will explain MS.  We will be advocators and educators.

So if you see someone wearing an orange ribbon on their lapel or shirt, it means either they have MS or someone that they know has MS.  We make them ourselves using orange satin floral ribbon and safety pins. 

During one of our ribbon-making sessions, a woman asked “What do you say when someone asks what MS is?  It is complicated and difficult to explain.”  Keeping it simple and uncomplicated, I would suggest this:

What is Multiple Sclerosis?

Multiple Sclerosis is disease of the central nervous system. Potentially anything controlled by the CNS can be affected–such as motor function, sensory function, sight, or cognitive/emotional functions.  Many symptoms are invisible, so many people don’t know someone has MS. (Examples: fatigue, weakness, bladder problems, numbness/tingling, pain…)

It is not fatal, contagious, or congenital.  There is no cure; the cause is unknown.  It is generally progressive.  The majority of persons afflicted will become disabled during the decades of their lifetime with no way to fix the damage. 

Every case of MS is different, unpredictable, and very uncontrollable. It is unknown what course the disease will take, what will be affected, how quickly it will happen, and how much disability will occur.  

There are new drugs that are trying to slow the progression, and meds to help relieve symptoms and shorten relapses. Nothing is available yet to prevent MS or restore lost functions resulting from its damaging effects.  However, there are many things one can learn to manage living with it.

We at the Arizona Chapter of the NMSS are starting to hand out copies of this brief description of MS to people we meet that do not know about multiple sclerosis.  We are going to encourage other MS groups and organizations to do the same.

We need help, and we certainly need a cure.

www.DebbieMS.com