Tag Archives: Multiple Sclerosis

Feet Care, Massage & Reflexology

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“Sole & Soul Therapy”

July 16, 2012

It’s time for a pedicure. I like pretty toes and feet. But I love the therapeutic benefits I get from getting a pedicure.

I never had a pedicure when I lived in Pittsburgh. Shoes were always worn and I thought getting my toes painted was frivolous. Then I moved to Arizona, where the state shoe is a flip flop. That’s lucky for me since I don’t have to wrestle putting on socks and shoes too often. It’s not an easy task for someone who has stiff hands and spastic legs.

Bare feet, also a standard here, also has its benefits besides not having to struggle with footwear. It’s cooler and more comfortable, especially when my feet swell from sitting too long. I can grip the floor better when I stand or take a step or two.

Arizona is a very casual-dressing state; the oppressive desert heat in the summer probably has much to do with it. Yet, most girls and women have their feet all gussied up with color and design—even the sloppiest-looking people.

I like looking nice. Maybe that comes from my upbringing, or Eastern roots. It makes me feel good. I like to match my outfits with my earrings, purse, and footwear when I go out, even if it’s to a grocery store. Finding comfortable and stylish footwear had always been a challenge to me ever since I started having walking problems. It was great when I didn’t have to buy matching footwear anymore, but I still had to have nice-looking feet.

So it didn’t take me long after I settled in to my new home to go to a salon and get a pedicure. That’s when I discovered that a pedicure provides more besides just pretty toes. The therapeutic benefits are enormous.

For me, who has advanced MS, cutting my own toenails and polishing them is quite a challenge. I felt like Dorothy in the Emerald City that first day sitting in a massaging chair, as I watched the gal carefully scrub the bottom of my feet. It was embarrassing that my big toes were stiff like two soldiers when she got started, but she told me to just sit back and relax.

And wow, did I ever! As she cleaned and clipped, I became immersed in the chatter going on in the shop. It was fun looking at what everyone else was choosing to do with their nails—the colors, designs, and sparkles. It was a great escape and mood elevator. Where have I been all these years?

After the girl cleaned up my feet and nails, she asked if I wanted extra massage for my feet. I giggled and said “Go for it!” That is when my eyes really opened wide. I couldn’t believe how good it felt as she skillfully massaged ever toe, every part of my foot, ankles and shins. My stiff, soldier-toes were gone, my feet were aligned perfectly–not inward–and my whole body was relaxed and rejuvenated.

What was going on? Where did my back, feet and shoulder pain go? I knew how beneficial a regular body massage was for my sore neck, shoulder and back muscles, but I never expected in a million years what a foot massage would do for me.

I started researching on the internet and found out that I wasn’t getting just a foot massage; I was actually getting reflexology. I was (and still am) going to a Vietnamese-run shop where the girls were trained to do this. I just didn’t know it because of the language gap—they speak very little English.

The foot has more than 7,200 nerve endings that connect to specific organs, according to the Reflexology Association of America. The top of the foot corresponds to the chest, the Achilles corresponds to the side of the hip, and the big toe links to the brain. Massage and reflexology techniques bring comfort and restore proper nerve flow. Hm– is this the reason why my big toes weren’t standing at attention anymore?

It is a form of alternative medicine. It doesn’t reduce my need for baclofen that I take for spasticity, but it definitely helps my spasticity and is a complementary approach for my bothersome MS symptoms.

I wish I could get a pedicure every week, but our budget won’t allow it. And unfortunately, other forms of alternative medicine such as massage, acupuncture, or yoga are not covered by insurance. But I consider it enough of a necessity to get one (with massage/reflexology) once a month. Fortunately, the shop where I go only charges $25 (plus tip). And gift certificates for birthdays and Christmas are always appreciated.

Relaxation, good company, energized well-being, less pain and pretty toes–all for $25-30 and an hour of time. I think it is a great bang for the buck.

P.S. I should mention that although the shop is filled mostly with women, it’s not unusual to see a guy or two in there as well :).

www.DebbieMS.com

MS: Reaching Out for Help

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“The Value of a Peer”

June 25, 2012

When I was diagnosed, one of the first things I did was talk to a peer.  Peers are priceless; they help immensely.  There is an instant connection and understanding, bringing both comfort and knowledge.

I could have never survived my MS if I didn’t reach out to peers, and I love it when they reach out to me.  Even as an old veteran of MS, I still find myself reaching out to peers for help and guidance.

Recently, I reached out to a MS peer for a different purpose.  I contacted Sharon Baldacci, author of A SUNDOG MOMENT.  Sharon has lived with MS for thirty-one years like me, and I reached out to her to review my new book, MANAGING MS:  STRAIGHT-TALK FROM A 31-YEAR SURVIVOR.

She responded to my email the very next day and agreed to read it and do a review.  I was shocked at first at the quick and agreeable response but I shouldn’t have been.  There is a camaraderie that exists between MSers.

Over the next few weeks, we emailed little comments back and forth.  Sharon just sent me her review, mentioning that after all these years she learned something new about an MS symptom she deals with from my book.  I, in turn, learned a few things from her; and I found another MS friend I can share with going forward.

Here is Sharon’s review of my book:

June 21, 2012

When I was asked to review Debbie Petrina’s new book, MANAGING MS: STRAIGHT TALK FROM A THIRTY-ONE-ONE YEAR SURVIVOR, I had to chuckle. I too have lived with this illness just as long and didn’t think it was possible to learn anything new.

Boy, was I wrong. This small, easy to read book is a wealth of matter-of- fact information interspersed with her memories that add credibility. I learned more about spasticity here than I knew and also the word `clonus’ that describes exactly what my weaker leg does sometimes. She adds practical tips for dealing with so many of the symptoms, and side effects of medications. The chapters are broken down into advice for the newly diagnosed, symptoms, grieving, heat, and what you can do about the variety of problems that come with MS. There are chapters about dealing with people (and how they deal with us) as well as what she calls the elephant in the closet – suicide.

She also makes it clear that it is the person with MS that is in charge of all decision-making, not the doctors. The doctors are there to give all the information needed for decision-making. She explains clearly why and how she made difficult decisions for her and her family and how it has worked out all for the best. She strongly encourages everyone to do the same. This is an empowering book that doesn’t sugar coat anything but makes the endless details manageable – from her 31-one years of experience. I felt like I was learning from an old friend over a cup of tea.

This should be required reading for doctors, health professionals, MS patients and their families.

Sharon Baldacci, author of A SUNDOG MOMENT

It’s incredible that the internet exists now to offer forums for peers of any situation to connect with each other.

Free.

Everyday when I give thanks in my prayers, I never forget my gratitude to all the MS peers I have interacted with over the years.

www.DebbieMS.com

Using Perspective and Positive Thinking

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“Overcoming Hardship and Loss”
June 4, 2012

“I had to put my beloved dog down yesterday. I’d rather have him back than the use of my legs.”  That was a tweet I sent out on Friday.

My dog Bear was such a faithful companion for thirteen years.  My son brought him home and gave him to me when he was only five weeks old.  It was love at first sight, and we were inseparable after that initial bond.  He was very sick when I had to make the decision to put him down.  I know I did the right thing, but I feel such sadness and grief right now.

He was my best friend.  He always listened to me, never was mean to me, and stayed by my side no matter what mood I was in.  If I was happy, he was happy. If I was sad, he was sad.  If I left the house without him, he laid by the door until I came home.  Our favorite activity was to take a long walk around the neighborhood every morning and greet the neighbors.

I started to train him to be a therapy dog early, and he was so smart he would put his own toys away.  Bear was so patient and understood my disability. At seventy pounds, he was sturdy and still as I grabbed onto him for balance, or needed help to roll over or stand. I swear if he could push a vacuum cleaner, he would have swept my floors for me.

Dogs are amazing animals.  They are incredibly smart and their senses are keen.  They don’t complain and if treated right, are so devoted; their love is unconditional.  They want to please, and are taught to be useful and obey. They assist police, soldiers, handicapped people, and others in incredible ways.

I am using the power of perspective and positive thinking to help me through my loss:

* Bear was very seriously sick and now he is at peace.  I know in my heart, mind and gut I made the right decision.

*We had thirteen good years together, and gave each other tremendous joy.  I was lucky, but he was lucky too.  He had a lot of love from everyone whether they knew him or not.  He was always fed, walked, brushed, played with and attended to when he was sick or hurt, up until his last breath.

*So many other dogs (or cats, etc.) never have these things.  They are abused, abandoned, or neglected.  Too many loving animals that could have what Bear and I had never get that chance.  In fact, he had a better life than most people on this planet.

*Likewise, even though I have many difficulties with my MS, I also have a better life than most people. My family loves and supports me, I live in a modest but comfortable home, eat well, and have everything that I need except perfect health.  But then again, I tell myself that things could always be a lot worse.  A good friend has a Down’s syndrome daughter; another friend has a severely autistic child.  My brother-in-law lost his 16-yr. child in a bad accident…

*It’s okay to cry or vent out feelings for awhile.  It’s not being weak or emotional; it’s being human.  My husband, son and I are talking about our feelings and memories.

*I am grateful for the sensitivity and kindness others have shown in support of the loss.  What would I do without my family and friends?

Throughout the years I have suffered many hardships and losses–my physical problems from MS; death of a parent, other close relatives and friends; financial and emotional distress from job losses of both my husband and myself—the list is quite long.  I have used my perspective and positive thinking through these difficult situations to help me cope with my grief.  Things happen in life we don’t always understand or think are unfair.  I think experience, age, my MS and attitude have taught me that. It may not work for everyone, but it works for me.

So I will be sad for now but slowly heal in time to the point where my sadness will dissipate and fond memories will replace it.  I will always feel Bear’s loss, but I accept it and will continue to move forward. Life goes on and Bear would want me to go forward with it.

www.DebbieMS.com

World MS Day on May 30, 2012

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Spreading the word: What is Multiple Sclerosis?

May 28, 2012

Many MS organizations and people are doing something for World MS day on Wednesday, and the question “What are you doing?” is asked of us in order to spread the word about MS awareness.

So I’m sending out this article about “What is MS?” to all my friends/contacts via all my online platforms and asking them to forward it on to everybody they are friends with online. I think people need to know what MS is, not just be aware of it.

What is MS?

Multiple Sclerosis is an autoimmune, inflammatory disease of the central nervous system, which includes the brain, spinal cord and optic nerves. That means that potentially anything controlled by the CNS can be affected–such as motor function, sensory function, sight, or cognitive/emotional functions.

It is not fatal, contagious, or congenital. There is no cure; the cause is unknown. The onset is usually from 20-50 years of age and most victims will have some form of progressive disability over time. That means that because there is no cure, the majority of persons afflicted (2.5+ million worldwide) will become disabled during the decades of their lifetime with no way to fix the damage. Current estimates are that 20-25% will end up in a wheelchair.

From the day those of us received our diagnosis, we have no idea what course our disease will take. What will be affected, in what way or how rapidly will we be affected, and how disabled will we become? Each case is different. MS is unpredictable and uncontrollable; the losses never stop, the grieving process never ends.

There are new drugs that are trying to slow the progression, and meds to help with relieving symptoms and shortening relapses. But they all have side effects. Nothing is available yet to prevent MS or restore most function lost resulting from its damaging effects; research continues to someday conquer these.

In the meantime, there are many things one can do to manage MS as effectively as possible, and find support to remain hopeful in stopping MS.

Please spread the word and pass this on. Thank you!
www.DebbieMS.com

New Beginnings in Life

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“Entering the Unknown”

May 14, 2012

I ran into my neighbor’s son yesterday and he told me that he was graduating from high school.  When I asked him if he was excited about going to the university, he admitted he was nervous.  It is out-of-state and he will know nobody.

The fear of the unknown.

As we journey through our years of life, we have many new beginnings that we will encounter, some big and some small.  Some we choose and some we don’t. Our first day of kindergarten, our first kiss, our first menses.  Our first fender-bender, marriage, house, baby and loss of a job or loved one…. The diagnosis of a disease or serious illness.   At first, we don’t know where to start or what to expect with each of these new beginnings.

Some things turn out easier than expected, and some end up being more difficult.  Many things happen to us that are unpredictable and out of our control.  We need help to figure things out, find it through a variety of means, and most of the time we learn how to manage.

As we proceed, the unknown becomes more known and the fear becomes less fearful.

A huge new beginning in my life was the onset of multiple sclerosis in 1980.  Anyone dealing with MS knows it requires constant learning and adjusting to new obstacles, lifestyles, and goals.  This incurable, complicated, and unpredictable neurological disease is a full-time job with many new beginnings in itself and lots of unknowns to face.

But I learned the ropes in managing it so that I could enjoy life, despite the setbacks.  Along the way I also had to achieve other things in life, such as motherhood, career changes, moving across the country and having to live on my own for three years while in a wheelchair.

Now I am involved with another new beginning. I chose to become an author and write a book.  Recently published, I wrote Managing MS: Straight Talk from a Thirty-One-Year Survivor for the primary goal of helping persons dealing with multiple sclerosis.  I get up close and personal when I share my experiences and expertise from my own life’s journey in this handbook.

Once again, this new frontier to explore has been a big challenge. The world of publishing and marketing books has changed drastically in recent years because of social media.  I’m slowly transforming from a dinosaur to a new chick in this technological arena and it hasn’t been easy.

Though frustrating, I’m not afraid of the unknown anymore.  I will read, experiment, and ask for help when needed in learning how to accomplish my mission.

I so desperately want to succeed, but I’ve also learned to be patient and just do my best.  Life has taught me this, particularly a life living with MS.

www.debbiems.com

 

 

 

 

What is Multiple Sclerosis (MS)?

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April 30, 2012

“The Misunderstood, Ignored, and Forgotten Disease”

I recently asked the question “How do people without MS react to you?” to an MS discussion group I belong to.  Their responses?  The same I have been hearing for decades:  We feel misunderstood, ignored, and forgotten by so many people.

Why do we feel this way? 

First, on the outside so many of us look good unless we have some kind of walking aid to indicate otherwise.  We’re not bleeding, we have good color in our faces, and we are not coughing or blowing our noses.  When we look good, people automatically assume that we are good.  I’m in a wheelchair, but I still look good and completely normal.  If I would use a store’s scooter instead of my own, I would get dirty looks.  I’m misunderstood.

But very often we are not good because so many of the symptoms are invisible.  Pain, tingling, numbness, fatigue, dizziness, tightness, depression, blurry vision, balance, coordination—the list is endless.  These symptoms interfere with everything we think, say or do.  They are annoying; they hurt; they are frustrating; and they make us crabby. For persons with MS that do or do not show visible impairment or walking aids, these symptoms are very disabling.

Invisible symptoms are difficult to describe, and when we tell someone about them it’s hard for them to understand or empathize.   Sometimes we use examples like “When I walk, it feels like I have a ten-pound weight on my ankle”, “It’s like when your arm falls asleep but never wakes up” or “My hands look normal, but I can’t button buttons.”

When we see these same people again, they forget that we have these symptoms because they are invisible.  If we talk about them, we sound like complainers.  Unless we complain about these things often, who would know we have these problems or that they continue to plague us?  And who wants a complainer around all the time?

Fatigue is the hallmark symptom of MS.  It is a universal complaint by over 90% of MS victims.  It doesn’t matter if the case is mild or advanced.  It doesn’t matter if one had a good night sleep or if the MS is not currently active. Fatigue is always present with MS, 24/7.  Why?  Fatigue exists because MS is a disease, a chronic illness, that causes other symptoms such is walking problems to intensify.  Constant fatigue leads to our moodiness or depression.  So when somebody suggests we need to get out and take our mind off things, they truly don’t understand why a sofa or bed is more desirable to us.

People without MS are often uncomfortable around us because they don’t know what to say or do.  Or because of our moods or a previous bad experience, they are unsure what kind of a response they will receive.  Others just can’t deal with it perhaps because of personal feelings like guilt. Therefore, it is often easier for them to just ignore it.

So, what can we do about it?

We need to be educators, communicators and advocates to everybody, everywhere—beginning with the basic question and a simplified, clear answer.  Forget the boring textbook medical details.  Something like this:

What is MS?

Multiple Sclerosis is an autoimmune, inflammatory disease of the central nervous system, which includes the brain, spinal cord and optic nerves.  That means that potentially anything controlled by the CNS can be affected–such as motor function, sensory function, sight, or cognitive/emotional functions.

It is not fatal, contagious, or congenital.  There is no cure; the cause is unknown. It is generally progressive.  That means that because there is no cure, the majority of persons afflicted (2.5+ million worldwide) will become disabled during the decades of their lifetime with no way to fix the damage.  Current estimates are that 20-25% will end up in a wheelchair.

From the day those of us received our diagnosis, we have no idea what course our disease will take.  What will be affected, in what way or how rapidly will we be affected, and how disabled will we become? MS is unpredictable and uncontrollable; the losses continue and the grieving process never ends.

There are treatments available that slow disease progression, and meds to help with relieving symptoms and shortening relapses.  But they all have side effects. Nothing is available yet to prevent MS or restore most function lost resulting from its damaging effects.  However, there are many things one can do to manage it effectively.

Peer-to-peer, we understand it, share our stories and how we cope with MS. We count on our peers, close family/friends and MS organizations for knowledge and support to help us manage it during our lifetime.

But we would like more.  We want everyone to know and understand what MS is about, not just be aware of MS being something that people walk for or bike for.  The more people that UNDERSTAND multiple sclerosis, the less we with MS feel we’ll be misunderstood, ignored, and forgotten.

Let’s all get started now:  hand, send or post this article to everyone you know.  Do it today!

www.debbiems.com

 

Do Weather Changes Affect MS?

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“The Rain is Coming”

January 22, 2012

I’m a walking barometer. I don’t have to listen to a weather report to know that a change in weather is coming. I can feel it.

My spasticity starts to worsen; my hands, legs and back begin to feel tight. I get tingling sensations and start to drop things. My coordination and balance problems go haywire. And then sure enough within a day or so, it starts to rain.

I hate it when it rains—or when it snowed when I lived in Pittsburgh. Those low pressure systems are killers for me. And when they linger on for one day, two days or more, I become more miserable. My one ‘bad day’ turns into two ‘bad days’ or more. My MS symptoms intensify, especially the spasticity and pain. And the longer it rains, the worse it gets.

I become unmotivated, lethargic and moody. My husband remarks that my moods change like the weather. I say, “yep, you’re right on that one!” No argument there. But, look out everybody if you are a female and have PMS at the same time…

I don’t have an explanation for why this is. I never researched it. I’ve talked with so many people with MS that this happens to; it isn’t a figment of our imagination.

When I moved to the desert from Pittsburgh, there was no question in my mind that a dry climate with limited days of rain helped relieve so much of my pain and stiffness. Pittsburgh is a soggy, rainy city almost like Seattle. People with rheumatoid arthritis move to the desert for this reason, too. My aunt has rheumatoid arthritis and she moved here over thirty years ago for this reason.

I was talking to a neighbor one day after a horrific thunderstorm passed through our valley. This good-hearted neighbor has four kids with severe brain damage. One child is biologically his, two are adopted, and one is a foster child. He told me the day before a thunderstorm hits, all the kids have seizures. I find that astonishing. There must be a neurological explanation to why this happens to us. I’m going to have to look into this.

I wonder what people with nervous system disorders living in the Amazon do. Maybe there aren’t a lot them in this situation; MS is rare down there nearer the equator.
People with arthritis say the same thing when it rains. They feel stiffer and experience more pain. My friends with arthritis who visit their relatives in wet or humid climates are happy to come home to the Valley of the Sun.

I try to keep up with exercise and deep breathing to relieve as much of stiffness and pain as I can during a rainy spell. Sometimes it works, sometimes it doesn’t. Complaining about it to others in our situation doesn’t solve the physical effects, but it does help the mood. There are sure a lot of us out there in the same boat. As they say, misery loves company. Sometimes I just throw in the towel and crawl in bed with a glass of wine and a good book.

The wind has just picked up and the rain is coming. My fingers keep missing the keys as I am writing this and I am becoming very frustrated. I think I’ll just throw in the towel and get that glass of wine. Eventually, the sun will come out again.

www.DebbieMS.com