Growing Old with Multiple Sclerosis

“A Double Whammy”
June 5, 2014

It has been awhile since I posted my last blog article. The pace of my postings has slowed over the months. And the pace of everything I do has slowed.

Staring out into my yard one day, the realization really struck me: I’m getting old! Next birthday I’ll be sixty, with over half my life living with MS. It is taking me longer to do things. Napping and resting more each day is necessary. There are many things I cannot do alone anymore and I need to wait for someone to help me. All these things eat up the minutes of my day.

Two things happen when you grow older with MS.

1. Normal people start experiencing many things that a person with MS may have been experiencing already: leaky bladders, less balance and coordination, weakness, fatigue, less strength and endurance, cognitive issues. Aging compounds MS symptoms. Wow—a double whammy. I personally noticed increased fatigue and weakness when I became post menopausal 1 ½ years ago.

2. With MS, it is always tricky trying to figure out what is causing what; is the MS acting up on its own, or is it re-acting to something else. There is substantial interplay between physical, emotional, and mental health. When you grow older, it becomes trickier, since age and hormonal changes (e.g. menopause) affects many things that MS affects. For example, are cognitive problems a new symptom of MS, or is it due to aging?

With regard to #2, I decided, at this point, why care about figuring what is causing what? The focus now should be what can I do to help these things as opposed to asking why is this happening. Like doing mental exercises and adjusting my exercise programs to maintain strength, endurance, etc.

Point number #1 has been a difficult adjustment for me. This year has been quite busy with numerous things. In addition to my regular household responsibilities, I became involved in helping four immediate family members with serious (separate) problems, had out-of-town guests, and did extra MS-related counseling and events—all in addition to trying to maintain my own MS-related issues (doctors, tests, new adaptive equipment, etc.).

My life has always been this way. Busy, helping out, achieving, overcoming obstacles… People depending on me more often than I ever depended on them. And that was okay because that is the type of person I am.

But–

Lately, everything changed. My brain went fuzzy. Motivation to go anywhere or do anything stopped. I didn’t exercise, and lost strength. All I wanted to do was sit or sleep.

My MS symptoms worsened. I was mentally, emotionally, and physically drained from things going on in my life. I’m tired, feel hurt and deflated. Like someone pulled the plug out of me. I didn’t make a conscientious decision to shut things down; my body forced it on me.

Some folks have an easier time “letting things go”, or have financial resources to help get things done around the house. Others, like me, don’t.

The MS in my life has made me grow older faster. Not on the outside—everyone still tells me “how good I look” and not nearly my age. But I feel like I am eighty and my body certainly functions like it. Actually, my body has been functioning like an eighty-year old for at least the last twenty years. So, I guess maybe I’m maybe pushing the century mark?

That’s the downside of getting old with MS. Like an old car, things are wearing out, breaking down and going slower. Lots of dents and bruises. Worn out from all the miles travelled at an age younger than the average normal, healthy person.

But there’s definitely an upside. All those miles travelled with MS and age brings with it a lot of wisdom, strength and experience. As I sat in my yard reflecting on my life, I started making a list of what the upsides of MS are/were for me, and I am sure others as well:

• I’m a survivor and a success. I focused on what I was able to do, not what I couldn’t do. As a mother, teacher, and educated businesswoman I learned to manage my life with MS while sharing and supporting others: my entire family, friends, children, teens, persons living with all types of illnesses/disabilities and the elderly. I did this voluntarily through my daily life—listening, sharing, talking, speaking, writing, letters, phone calls, cards, social media, holding hands and giving hugs. All for free.

The upside? Priceless payback in knowledge, personal growth and problem solving acquired from all the interactions. I have found that so many people who acquired MS are of this same nature. Positive achievers. The irony of getting MS altered my personal life actually for the better in terms of my life’s goals and direction.

• I never took things for granted and always appreciated so many people and things in my life. A sunrise, an outing with a friend, the hand controls in my car, my freedom from living in the U.S… Being wealthy or keeping up with the Joneses didn’t matter. I was satisfied with what I had. MS, or any chronic illness can make you be this way. You don’t lose sight of what really matters in life.

• You can’t recover an opportunity after it is missed or time after it has passed. Whenever possible, I strived to enjoy as many things as I could. One never knows what the future holds or how fragile life can be. Having MS or another major health issue will do that to you.

Life can turn on a dime, as the saying goes. My awesome sixteen-year old nephew was in an accident and was brain dead for twelve days before he passed. My dad died of a heart attack in 1972 at age 45 when I was seventeen. An acquaintance of mine fell out of a tree and became a quadriplegic in his forties. I lost one of my best friends of cancer at the age of forty-nine. My husband and I were caretakers for his bedbound and blind grandmother for fifteen years. The list goes on…

• Living with MS taught me how to take care of body and protect it. Eating, sleeping and exercising properly. Using walking aids. Maintaining good health and avoiding drugs, smoking, and taking huge risks. I paid attention to my body. When I was 32, I took quick action for a weird-looking mole on my back, only to find out that I had malignant melanoma and would have died six months later otherwise.

My internist jokes that I am healthier than most people he sees all day! I got results back today on thorough blood work, and everything was normal. (Too bad my sensory and motor functions are a MeSs!)

• I have the virtues of patience, empathy, compassion. I became a whiz with commonsense, logic and communications. I fight for what is right and what I am entitled to.

• I am an expert in managing MS. Though MS took control of my life at times, I knew how to get back in control.

I recently called an old friend of mine whose husband died unexpectedly last month. She has had MS over thirty years, is seventy years old and her hubby was her loving caretaker. Being a fellow old veteran MS buddy of mine for 25 years, I wanted to check in on her now that all of the memorial activities have ceased and the reality of her new situation has begun.

We talked about her present position and future plans, about MS, and so many other things. There are quite a few things I would like to share about our conversation that I believe is worthy for someone with or without MS at any age to think about.

• It’s essential to have a solid network of friends and family. You just never know if your caretaker will pass or leave you. “J” is ambulatory, but she does have her limitations in other ways because of MS. J has no children. Though dependent on her husband whom she had a loving relationship with, she maintained her independence as much as possible. One of my favorite expressions is “Use your mouth and your intelligence”, and J does that. Her wonderful circle of support helped her with the memorial and the aftermath of things to do. Going forward, her “circle’ will help out with her car and her house.

• It’s important to have a plan in place in the event your caretaker/significant other leave before you do. Where would you live? Who could take care of what? Plans should involve short and long-term healthcare, short and long-term finances, wills, living wills, medical powers of attorney, memorial desires in writing.

• Do you know where to find important information, or how to do things your significant other does? For example, my husband knows all about the “outside” of the house (e.g. circuit breakers, timers, sprinklers, all of info about our RV…) and I don’t. I know all about the household finances, taxes, investments, insurance, where all the important documents are kept and he doesn’t. We need to find the time to educate each other.

• It is never too early to know how to take care of yourself and depend on yourself financially. When my dad died, there were three of us kids and my mother was a homemaker. I learned early to work, get a college education and into a high-paying career field, save and invest. Good thing. I got MS in my twenties. One never thinks it will happen to him/her.

• Age is wisdom. J and I talked about how well we know what is best for us and how we have the confidence to trust our intuition and judgment in making decisions. We also know when to reach out to a person we can trust to discuss something with. After all, two heads can be better than one.

For instance, J mentioned that her neurologist is pushing her to switch her DMD from Avonex (requiring a weekly injection but working well for her) to a newer oral treatment. Her answer? “NO! I know my body, and I don’t want any new drug with new, unknown side effects and more MRI monitoring.” She asked me what I thought about her decision.

• Finally, WE are in charge of our own bodies. At a recent visit to a new internist, I declined a bone density test, Pap smear, mammogram, colonoscopy, and two vaccinations. After explaining why, she accepted what I had to say, and said she will always work with me.

Getting older is a welcome if you have your health. The truth is, living with MS is very hard. As I get older, it is getting harder and more complicated. I get tears in my eyes when I see commercials of happy senior citizens in active adult communities.

I’m in the so-called Golden Years and retirement. It’s time to let more things go and make the most of it. This doer part of my personality needs to be turned down lower to control my self-induced stress. I just booked a cruise to Hawaii, while I have the opportunity and the time.

Now I am going to fix myself a margarita and watch the hummingbirds on my patio. And not think.

www.DebbieMS.com
Author/MS Counselor/Living with MS

Kristie Salerno Kent’s New Memoir “Dreams”

“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

Positivity: Essential For Our Health & Happiness

“How to Embrace It”

July 16, 2013

Having a positive perspective in life is critical to both our health and happiness.

Earlier this year I came across an article by Renie Cavallari, CEO and Chief inspirational officer of Aspire Marketing and Training, and saved it. Recently I went through a negative spell, and re-reading this article helped me re-focus and turn my attitude positive again. Since her article is so good, I decided to take direct excerpts from it to share with others:

“Nothing positive comes from negativity. How you choose to see the world is how you experience it. You feel the way you think and your thoughts reflect your actions.

As a human being, you can control how you feel. You can choose to take any situation and consider it from a positive perspective. This is not to say that when you feel bad or sad, you should deny your feelings. What you can do is decide how you will allow the people and events of your life to affect your world.

Things happen that are disappointing, upsetting or overwhelming. This is when you have to conscientiously change your perspective so you can get to a more productive mental space. You cannot change the events of your life. You can change how you experience them.

Here are a few tips:

• Ask yourself, “What is right or good about this situation?” Avoid the negative narrative and find what is helpful.

• When your energy is low, this is the first sign that you want to get some exercise. Exercise actually “turns on” our energy and has a way of giving our negative thoughts and feelings a place to release. Just take a walk, breathe in, pick up your pace and burn off the negative energy.

• Who you hang out with is who you become. Some people just give off negative energy; this is why we feel so exhausted around them. When disappointments happen, you want positive and supportive people in your world. Fire the naysayers. They are not helpful and only hold you back.

• Sometimes embracing the humor of a situation helps. Ask yourself, “What about this situation will be funny in a year? Or maybe five years?

• Move to solutions. Many times we think about what is wrong vs. what we can do next. If you stay in a place of a problem (what is wrong), you end up feeling negative and stuck.

When you start planning what you are going to do, you begin to feel empowered and in control; you start moving toward what you want. This forward momentum creates more positive energy and gets you where you want to go.

Your energy determines how you feel and experience your life. Positivity is the fuel for happiness.”

Thank you, Renie!

www.DebbieMS.com

Attitude is Everything

“Taking Control of Yourself”

January 23, 2013

I was in the process of writing an article about the ramifications of mental and emotional health when living with a chronic illness like MS, when I came across the following post today while perusing an MS connection online site. It is so incredibly good I am taking the liberty of sharing it to others I know with MS.

“Hi everyone, I have been away from this site for a long time. Just recently got back on. When I first found the site I was looking for help with my MS. Received really good advice then didn’t come back regularly as I should have.

I have learned a lot in the last 7 months. I believe in “pay forward” so I wish to share this with you. I hope it helps and doesn’t insult anyone. The bottom line is I am in control of what I choose to do and not to do, remember this throughout this message.

I have had a multitude of symptoms. Number one is DEPRESSION! I believe this is the cornerstone to a lot of my choosing not to do. I have done mental health therapy with a counselor, PT and OT. Through all of this I became educated. Now I am realizing that I chose to stay in my poor me syndrome. I was so sick of doctor appointments, running constantly which cause me to be exhausted and frustrated because no one could fix me.

I hate the cognitive fog, forgetfulness, physical limitations, sexual dysfunction, tremors, pain, confusion; I hated every part of MS and what it has done to me. I missed the old me and desperately wanted to be fixed without having to work so damn hard to try to get back to the old me. My neurologist told me “change your attitude and you will feel better”. I was pissed off to say the least. It has been 2 months since I have seen him, and I now know he is right. I am in control of my attitude.

My depression was preventing me from living, and I chose to stay this way in misery. We increased my depression meds and I slowly began to change my attitude, which is very challenging with the unpredictability of MS.

I am trying to laugh alot more and trying to adapt to my challenges. Helping myself get enough sleep, drinking fluids, getting educated, another words helping myself. There are days I eat the wrong foods, drink too much caffeine, smoke too much (still working on this need to quit) and those days I know I have myself to thank for how crappy I feel. Exercise is very helpful mentally and physically. I wouldn’t exercise because I couldn’t do what I used to do, so I chose not to do it. This only hurts me more.

So I guess what I want to tell you all, is look deep into yourselves and do a personal inventory. I had to realize I can’t be fixed. No cure for MS. Accept this. Then change your attitude from can’t do to I can do. Find the laughter! As hard as it is to do, acknowledge we are not who we were before MS. We are trapped in this auto immune, unpredictable disease. Say this totally sucks. Then move on. Start over building the new you. Challenge yourself to be the best you can be each moment, acknowledge your success and failure. If you fail, look at the reason why, did you bring this on yourself? Sometimes we cause the situation, other times it’s just the MS. If the latter is the cause, move on; adjust then if you can laugh through it. But you have to move past it.

I type these words and know some of you won’t get it and maybe it will help some of you. I chose not to do a lot; I needed to wallow through the misery of MS. I will have bad days, and if I chose to stay there, this is my choice. I can’t imagine anyone not being depressed with a diagnosis of MS. It’s so devastating. I remember when I was diagnosed I thought “oh thank God I’m not crazy”; there was a reason for what was happening to me. But then I allowed the MS to make me crazy by wanting to be fixed and have all this crap go away. Well it doesn’t and everyday is a new day and full of challenges and ups and downs.

Also, how many times have we heard stress will exacerbate our symptoms, “try to avoid stress”? OMG! Are you kidding me? Ladies and Gents life is not stress free nor is it avoidable. The key to success is how you handle the stress, not how do you avoid it. I mean really you have this incurable disease that has robbed you, this is stressful.

I have a new attitude (most of the time) about stress. It is what it is. I look at stress and think how does this really affect me? I can allow myself to get all wrapped up in the drama, or I can meet it head on, fix it or forget it. If you can end the drama, do it. Set the boundaries. Don’t allow others to suck you into things that really don’t affect you. Shelter yourselves from the unnecessary drama. This only zaps your energy and well being. You need to protect yourself. Stress is like infectious bacteria that want to invade you and make you sick.

Set boundaries, make them know and put up your shield. Some people may think you are being mean or uncaring. So be it. I know what I need to do to keep myself upright and moving forward. If they can’t accept this, then I guess they are not ready to accept me for who I have to be. I can help them but only if they don’t suck me into the stress and drama.

You need to see things in black and white at first, don’t allow a gray area. As I learn more about me and what I can tolerate, I may be able to not have such a strong force field around me. But for now this is what I need to do for me. This saves my energy for the moments I have to really deal with big stressors that take me by surprise. Then when I have those stressful times, I can take a realistic approach to how to not allow it to make me sick. I can think clearer and reset the boundaries for each “big” stressful situation. May the force be with you all!

I hope this rambling helps most who read it. Some of you may think I am nuts (sometimes I am but my counselor assures me I am not crazy). The bottom line is take care of yourself first, everyone else comes after you. You need to find your “new” self and set realistic goal and boundaries and make them known. Say them out loud for loved ones to hear and understand. Ask for help, but don’t ask everyone to do everything for you. Rise to the challenge and find the “new you”. I never thought I would say this, but MS has helped me to see how the old me really wasn’t all that healthy mentally or physically. The new me will be a new and improved, just slower but I have a better outlook today than yesterday and for that I am grateful.

Best wishes to you all! Your friend in MS, Michele”

No Michele—you are not rambling and you are not nuts. You are an incredible inspiration. There is a sign in my doctor’s office that reads “Attitude is everything—Pick a good one!” I love yours and the next time I get down in the dumps and have trouble getting out of it, I will read your post. I give it a AAA+ grade, for An Awesome Attitude.

There is no mystery that people with positive attitudes are happier, live longer, and are stronger.

Thank you.

www.DebbieMS.com

Giving Thanks to What Really Matters

“Positive Perspective & Attitude”

November 19, 2012

Recently an MS friend of mine and I were having a chat, and we were talking about how MS has impacted our abilities over the years.   Ah, the value of a peer to share with…

Being an optimist, I said there is a silver lining in everything.  If it wasn’t for me having MS, I would have never met the truly wonderful friends I have today or the beautiful people I met during the major part of my life.  Good friends are priceless, and I am so grateful to have them.

I would never have met them if I didn’t engage myself in the world of being a volunteer.  Volunteers are special people.  They give of themselves and ask for nothing in return.  They are there when you need them, smiling.  That is priceless, and there ARE free things in life.  I would never have survived MS because of their support, and will be ever grateful to them.

Sure, I have my boatload of problems due to the MS.  Just like others who have problems with cancer, special needs children, loss of limbs because of a war… Life is not equal for everyone, and things surly can be a lot worse.  I’ve lived through many major-life crises not related to MS—deaths, job losses, melanoma—but I always came through them.  I give myself time to grieve, vent and complain; then establish my priorities and focus on what really matters.

Sometimes I make a list of what I have to be thankful for, and it is very long.

Things like these keep me optimistic and having a good attitude.  Without a good attitude and a positive perspective, I would have shriveled up long ago; like a flower that would die without sun and water.

So before this Thursday, make that list, and thank everyone that has helped you in some way.  It will make you feel good.

Happy Thanksgiving!

www.DebbieMS.com

 

 

 

Transition from Grief to Acceptance

“I Can’t Dance Anymore”

March 12, 2012

I started dancing when I was three years old, and always loved all types of dancing. My favorite dances though were those of my cultural heritage. My grandparents emigrated from Croatia and Slovenia and so the traditions were instilled in me as early as I can remember.

One of my greatest achievements was when I was accepted into a professional musical ensemble called the Duquesne University Tamburitzans. The longest running stage production in the United States, authentic music, song and dance portrays many Eastern European and neighboring cultures’ traditions. Affiliated with Duquesne University, as an accepted member I was awarded a scholarship while attending college.  See http://www.youtube.com/watch?v=LhItCxgX-hg

My MS symptoms appeared noticeably when I was twenty-five, though in looking back, I can recall having some balance and coordination issues while I was dancing with the ensemble. My aggressive course of MS left me with the inability to do anything but walk slowly by the time I was twenty-eight; there was no more running, hopping, skipping, or dancing.

I was devastated. While I was teaching my one-year old son to walk, I was losing my ability to do so.

I attended a wedding on November 20, 1985. That night, I wrote in my personal journal: “Everyone danced tonight but me. Again. That hurts. I love to dance. I can feel the potential movements in my system that would direct me exactly how I should move, but I can’t do it. I’m so frustrated…”

It took a long time to get through first the anger, and then the sadness and depression. But the brain is a powerful organ, and I worked on my perspective. These were the thoughts I began to think about and focus on:

  •  I was happy that I had the opportunity to grow up with dancing and enjoyed all the years in doing so. So many people do not get that opportunity.
  •   I found other ways to enjoy dance: musicals, Broadway and Civic Light Opera shows, kids’ performances… Though the show “Dancing with the Stars” can be annoying, I find the actual dancing to be incredible.
  •  An acquaintance of mine was a ballerina with the Pittsburgh Ballet. Ballerinas can only perform for a limited amount of years. She opened up a dance studio and has been teaching young girls ballet for years. Athletes are in the same situation; their prime years are limited and then they have to transform their skills into something different.
  •  Most of all, dancing with the D.U.Tambutizans required immense discipline, dedication, concentration and strength. It was those particular attributes that tremendously helped me to survive my MS.

I will be attending the 75th Anniversary Reunion of the Duquesne University Tambutitzans in Pittsburgh, PA during the last weekend in March. I will be visiting my colleagues and long-time friends with this amazing organization, and watching this year’s production of their two-hour show by the current members.

I am itchy with excitement and pride. It will be tears of happiness that I will be shedding as I watch them all do my favorite dance, the polka, and remember the awesome memories and goodness that I got from all of it.

My feet don’t move anymore and I’m okay with that now. But my heart still moves with a good beat, and that’s worth more.