STORIES OF INSPIRATION

Take a moment to read the inspirational stories shared by people diagnosed with MS who learned the facts to make informed decisions about treatment and lifestyle changes to manage life with MS.  Each person included lifestyle changes that allowed them to find their unique path and achieve success in reaching their goals with managing their MS and their symptoms.

Meet Joe

Friday April 13, 2012 kicked off a new chapter in my life.  Yes, you read that right, Friday the 13th.  I didn’t realize it at the time but changes that day would bring would make it a lucky day.  I woke up earlier than usual.  Light spasms coursed throughout the entire right side of my body.  I stayed home from work and took some ibuprofen thinking that the spasms would go away but they didn’t.  I down played everything as my wife went to work so she wouldn’t worry.  

As that morning drew on, the spasms became more intense and more frequent.  It began to feel like the entire right side of my body was being electrocuted for about 5 to 10 seconds and that happened 3 to 5 times an hour.  I was literally cramping up from my face to my toes.  By 10:30 AM I was calling my wife begging her to come home and take me to the ER.  The pain was just too much.  I’ll never forget how big my wife’s eyes got when she saw me spasm.  I’m not sure what she thought when I laughed at her.   Her eyes were just huge.

It took me a while but I walked in the ER. I don’t know why I didn’t want a wheelchair, I just wanted to walk. At first nobody paid attention to me but while I stood at the window I began to spasm again. The nurse at the desk saw me spasm I was seen immediately.  Next thing you know I’m on a stretcher surrounded by people. I remember telling everyone to calm down and that I’ll be ok but I don’t think I was heard.  You know, I’ve heard people complain about waiting in an ER.  Well let me just say that being seen right away and watching the ER staff work on you doesn’t grant that much comfort either.  In the future if I ever have to wait in an ER, I know that everything is going to be OK.  

What followed were days filled with a lot of questions and tests. Almost 3 weeks later and I saw my neurologist.  She was great!  Right off the bat, a spinal tap and 1000MG of IV Solumedrol for 3 days.  After the Solumedrol the spasms began to subside a little more each day.  

On May 10, 2012, my neurologist told me I have MS.  To say I was shocked would be an understatement.  I won’t lie, when we got home I cried and got a little bummed.   


A few days later I decided that I’m not going to be depressed and feel sorry for myself.  I wanted to do anything so I went on line and read as much as I could.  I researched everything from bee sting therapy to vitamin bombardment to stem cell research.  Nothing I saw or read seemed to help anyone long term.  I looked at so much junk that I turned off the computer.  I realized that I have to be wise about this and not get desperate.   

I talked to a few people about MS and was actually told to look into going on disability.  Needless to say, that didn’t sit well with me so I quit talking to those people.  I was determined but I didn’t want to waste my time on chasing “cures” that didn’t work or talking to people that couldn’t help.  It was tough but I knew that I couldn’t give up. Things were frustrating though.  I kept dragging my right foot when I walked and tripped over everything.   It’s hard to explain but the entire right side of my body felt week.  I was physically and emotionally drained.  

That’s when I met my inspiration.  A short little nurse named Jan.  She came to my house and taught me how to give myself shots and offered information on how to take care of myself with MS in the picture.  Then she told me she has had MS for 20 years.  Jan balanced on one leg, ran up and down the stairs and all while wearing heels.  She stayed and talked to me about finding my path with MS.  With that short little visit, she really opened my eyes.    

The next day I came up with a list and wrote it down. 

1) If I don’t like a doctor then fire ‘em.

Luckily I haven’t met a doctor that I want to fire but I’ve talked to some people who’ve had terrible experiences.  I realized that I am my best caretaker.  Nobody is going to take better care of me. 

2) Never stop moving forward.

I have MS and that can’t be changed.  No lamenting. No regrets.  From this moment forward do what I have to do in order to stay healthy.

3) Always take my medicine.

‘Nuff Said.

4) Stay up beat.

There are always ups and downs, and that’s ok.  I’m going to fail again and again then I’m going to get right back up.  Staying positive is life changing.  

5) Get in shape.

5’9” and 260+.  WHAT?

6) Love myself and accept myself the way I am.   

Now, I was really sick of tripping over everything.  It seemed like my right foot was always getting caught on something.   To say I was frustrated would be an understatement.  

One day I saw my daughter jumping rope. I thought, I’m going to try that and see if it will help me to stop tripping over everything.  Every day I’d walk outside and jump rope.  I kept in mind not to overheat or hurt myself.  I’d jump a couple times then mess up.  At first I couldn’t jump more than twice in a row but I kept on.  

I wasn’t putting any pressure on myself.  When I messed up I simply started over.  A couple of jumps turned into a few seconds.  A few seconds turned into 30 seconds.  Then that turned into a minute and a minute became a couple minutes.  It took about six months but then I could jump rope for about one song.  Now I can jump for about 10 to 15 minutes at a time. 

Along the way I lost a few pounds.  Like I said I weighed 260 lbs.  Now I hover around 210.  I did get down to 195 but I started lifting weights and put on a lot of muscle.  I’m going to have ups and downs but that’s ok. I’m in this for the long haul.  Today, I don’t trip over things. 

Then, I’ve decided to chase dreams.  I’m doing things I never would have done before MS.  In the last few years, I use MS as my excuse to do everything.  

I’ve been in a short film named Everything’s Personal where I played an FBI supervisor infiltrating the mob.  I was a Boss in a TV pilot named Home Again that was actually reviewed by execs in Hollywood but it didn’t go much further that.  I was dropped from a short film because I questioned the idiotic use of foul language.  

I sang on stage in front of several hundred people the Gaylord Palms Resort in Orlando, Florida.   Someone heard me singing in Florida and thought I sang well.  As a result, I’ve signed a one CD music recording contract with Tate Music Group out of Oklahoma City.  

I’ve met Miss Kentucky.  I became the lead singer for an awesome hard rock band.  I’ve met many people and talked about MS.  I’ve made many many cool friends along the way.  I still have a lot more to do so I’m not done yet.     

Oh I won’t lie, I stumble and fall from time to time; physically and emotionally.  Take one step back and two steps forward then vice versa.  Along the way I’ve learned I’m going to make mistakes over and over again. I’ve had ups and downs along the way but everyone has those.  

MS can be a curse but guess what?  I wouldn’t change a thing.  This made me appreciate life more than I could ever have imagined.  Every second is irreplaceable, priceless, a gift.  Without MS I wouldn’t have followed any of my dreams.

Meet Susan

After I was diagnosed with multiple sclerosis (MS) in 2003, I eventually learned to value both yoga and meditation as ways to stay as healthy as possible both emotionally and physically.  Getting to this place took me a long time.  I hope by sharing my experience, the time it takes for you to enjoy their benefits will be shortened.  I discovered meditation fairly quickly after I was diagnosed with MS as a way to deal with fear.   But finding teachers who could make its techniques useful to me took years.  Some time later, MS Connection recommended doing yoga but I hated yoga.  I didn’t like how stretching felt.  In yoga classes for the temporarily able bodied, I felt like a total failure at doing the poses correctly.  The public humiliation of getting kicked out of yoga class due to my balance problems confirmed for me that I couldn’t do yoga.  Until more recently.

My luck changed when I participated in a program that taught yoga instructors how to teach those with multiple sclerosis.  Before the yoga instructors practiced on another volunteer who was in a wheelchair and me, they asked us to talk about our experience of living with MS.  After we spoke, the studio owner reportedly stated to those sitting close to her that she could turn us into yoga instructors.  I wanted to laugh.  Me?

A year or so later the studio owner offered us the opportunity to study with her to become yoga instructors.  I had read Waking by Matthew Sanford, a paraplegic who found healing through yoga.  While visiting Minneapolis, I took a class in his studio for people with balance problems.  I was blown away by how the greatly modified poses accessed energy during yoga while not making me feel inadequate.  I wanted to do more.  Perhaps this is what led me to accept her offer despite my misgivings.

Through the generosity of the studio owner and by learning how to modify yoga poses, we made it.  Now meditation and yoga are part of my daily routine.  But why should it be part of yours?  Because Western scientists who are studying the effects of these practices, which were honed during the last 2500 years in the East, are finding them beneficial.

Jon Kabat-Zinn, who wrote Full Catastrophe Living, was a pioneer in using meditation to help patients in his stress reduction clinic at the University of Massachusetts Medical School.  Later the Dalai Lama began to collaborate with Western scientists.  Richard Davidson, PhD at the University of Wisconsin studied the brains of monks while they meditated.  Other scientists have extended the inquiry even further.  The Dalai Lama meets annually with Western Scientists to discuss their research findings.  For an accessible summary of recent findings, read The Mind’s Own Physician: A Scientific Dialogue with the Dalai Lama on the Power of Meditation.   See also  Mind & Life Institute, www.mindandlife.org;  www.investigatinghealthyminds.org.  For further astounding examples of the mind’s healing capabilities, read Dr. Norman Doidge’s book The Mind That Changes Itself.  The studies of Western scientists are documenting what meditators have known from their experience: the healing power of the mind is vast.  A Western scientist might say instead that the brain is plastic (neuroplasticity).

Since the mind and body are connected, this healing extends to the body.   

How does this work?  Let’s start with yoga since it began as a discipline to prepare the body for meditation.  Yoga yokes the body with the mind through the breath.  In so doing, you learn how to turn your fight or flight mode (sympathetic nervous system) into a relaxation mode (parasympathetic nervous system).  Once yoga has prepared your body for meditation, once again you use your breath to calm your mind by being in the present moment.  Then, once your mind is calm, you look at the reality of your existence more closely.

Let me illustrate how this could come up during my daily morning practice.  After I take a Baclofen and give it time to work, I begin yoga with loving kindness toward myself by rubbing my numb feet to remind them that they are still part of my body.  Through the audible technique of ocean breath (uggayi breathing),  I anchor my attention to my body and pace my practice through the natural rhythm of my breath.  As I stand in mountain pose, I ground my shaky body to the earth until I feel a little more stable.   As I bend at the hips in forward standing bend, I modify the pose by extending my knuckled fists further from my body on the floor and enjoy the stretch in my hamstring muscles, no longer demanding that they try feats they cannot do.  As I raise my arms in Warrior 1 pose, I notice it has taken over a year but my whole body is no longer wracked by a wave of spasms when I do the pose.   I lean on a chair as I modify tree pose with my right foot resting against my inner left ankle.  I notice that my balance has not improved no matter how many years I have tried this pose.  I notice, do it anyway in a way that is safe for me, and rest in the fact that this is so at this moment neither being ambushed by hope that it will improve nor fear that it could get worse.  As I extend through my arms into seated forward bend, my body shakes as I bend forward.  I notice and keep my attention on my breath.  During the last pose, a resting pose (savasana), I drop any thoughts letting the wisdom of my body integrate the work I just did.  As I rise from the pose, my muscles feel the relief of having been stretched and I feel relaxed and whole.

Now that my body has been prepared, I sit down to meditate.  First, I train in using my breath to anchor my attention to the present moment.  This has a calming effect because my mind naturally goes to the past or the future spinning exhaustive, scary stories particularly around MS.  Once my mind is stabilized, I continue other mind training exercises that help me deal with the reality of having MS which help open my heart, develop compassion for myself and others, and prevent me from centralizing onto myself.

In essence, the practice of yoga and meditation help me to live fully the only life I have which is in the present moment.  It’s good medicine.

Susan lives in Texas and leads a meditation group for those who have a chronic illness at the Shambhala meditation center in Austin, Texas.  She is certified as a 200-hour yoga instructor in the IYT tradition.