Being Grateful: Validate the Hardship and Strive for the Bronze

Posted on November 8, 2017 by MSAA

By Stacie Prada

I used to think being positive meant focusing only on the good things in life. I was really good at it too. A friend would say she’d had something bad happen, and I wouldn’t miss a beat to respond with how great it is that a worse outcome didn’t result.

I did it with myself too. It seemed like if I let myself think about the difficult things, that it was being negative. That it could lead falling into a dark place of feeling bad and never climbing out. I once had a counselor tell me after 9/11 that thinking about what happened doesn’t make you sad. What happened makes you sad.

In that way, thinking about having multiple sclerosis doesn’t make me sad. My chronic illness and progressing MS symptoms make me sad. Ignoring them doesn’t change the fact that I have both. We’re not limited to feeling one emotion at a time, and feeling sadness or frustration with one aspect of life doesn’t preclude feeling optimistic. I’d argue that we need to feel one to appreciate the other.

To feel genuine gratitude, I need to know it’s not mandatory to stuff my feelings and be happy every moment. I can’t ignore the tough parts of my life and only acknowledge the things that make me grateful. I can’t just write a list of unrelated things to be thankful for and stay sane. If I’m feeling sad or resentful, I need validation that it’s understandable to have those feelings. If I skip this step, I’m minimizing my frustration or implying I don’t have a reason to feel bad. Once I sit with it, grieve for it, and assure myself I’m not weak or overreacting, I can then choose to focus on things that make me grateful. Sometimes it’s a quick shift, other times it’s a rough climb out of funk. Either way, it helps me come to a place of genuine appreciation in my life.

I think about it as winning a bronze medal. There’s an article in Scientific American, Why Bronze Medalists Are Happier Than Silver Winners, that I think we can use in our own lives to be happier. People who compete and miss winning first place exhibit less happiness than people who don’t perform as well but still make it to the podium. Silver winners focus on the one person who did better. Bronze winners compare their performance to all the people that tried and didn’t win anything.

When I’m grateful, I’m recognizing my efforts and satisfaction. I’m not seeking perfection. I’m looking at how amazing things already are. I may acknowledge what could be better, but I’m recognizing all the ways it could be worse. Some people seem to have a point of pride of noticing the error or the flaw in things. They can make you feel like you’re never good enough. Try not to judge yourself harshly and add to feeling miserable.

How we perceive our situation makes all the difference. When living with a progressively disabling chronic illness, things will stink and be sad and frustrating and feel too big to deal with at times. Sometimes the best I can do is know that how I feel right now won’t last forever.

The measure of success changes depending on my health. If I can participate in a race and come in last, I’m grateful that given my circumstances I can do it at all. If I feel bad, I know that’s a part of the condition and grateful for the abilities I still have. If I’m experiencing a permanent loss, I acknowledge that it’s sad to experience the loss and grateful for the time before the loss.

Strive to have a mindset of someone who’s coming in third. Or someone who’s in last place and may or may not finish. You’re still doing it.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

Spring!

Posted on April 21, 2017 by MSAA

By Lisa Scroggins

Finally, spring is here, and I feel more energized than I have for some time! I suppose it’s a combination of the improved weather, and an improved outlook.

When I saw my neurologist in February, I asked about Lemtrada as well as Ocrevus (which has since been approved by the FDA). My doctor wasn’t very encouraging about either option, and I was frustrated. I talked with my husband about getting a second opinion. I wanted the latest, greatest treatment, and I wanted it now!

I suppose I’m the classic dissatisfied person with long-time MS. Things really went south for me a few years ago, and I won’t lie: I was deeply sad, and shaken by the newest losses I was experiencing. We have made trips to see a specialist, and had high hopes for something new that might help me improve. I’m sorry to report that not only did the specialist not have any new ideas or ones that differed from my general neurologist, but she turned out to be a truly unkind person. By that I mean that from the first moment I met her, her basic social skills were sorely lacking, to the point of rudeness. (Example: when I first met her, I held my hand out to shake hers, and began to introduce myself. She held her hands up, palms facing me, saying, “I just washed my hands!” My gut told me this was weird, but I fought my instincts. I didn’t know this doctor yet, and we’d traveled quite a distance, incurring hotels, meals, gas, etc., and the last thing I wanted to do was go back home without getting seen.) That kind of thing can happen to anyone, but somehow, because MS is a chronic illness, and I made special arrangements to see a so-called expert, I was unprepared for the callous way that the “expert” treated me. It seems obvious in the abstract that not all doctors have a great “bedside manner,” but I confess I was really vulnerable and it hurt, probably more than not being offered something new to try.

Back to my local neurologist and my silent demand that I must be on something new. While I have not officially gotten a second opinion, I feel as though I have. I watched a YouTube presentation by two MS neurologists in another geographical area, and even though the words they used were very similar to what my doctor had said, it essentially was confirmation of what he had told me in February: those two treatments are new, and it remains to be seen if either or both have unanticipated, even serious side effects. I know they didn’t mean it in a disrespectful way, but they as much as said, “let others be the guinea pigs.” Worded more professionally, for people who continue to experience attacks while on another medication, one of these drugs might be a Godsend for them. But if attacks are not occurring, it’s much safer and wiser to remain on one of the drugs with a much longer safety profile.

I did not want to hear this, and yet, I needed to hear this. My husband didn’t say so, but I suspect he is relieved that I’m not pressing to hit the road again in search of a different answer. I’ve come to a proverbial fork in the road of navigating life with a chronic, sometimes cruel illness. The best thing for me to do is to continue on the therapy my doctor has prescribed.

People with MS are taking big risks to try to improve their functioning, and both Lemtrada and Ocrevus have the potential to be quite risky. The biggest buzz seems to be about HSCT (hematopoietic stem cell transplantation). This has not been approved by the FDA, although there are studies in progress. So far, the number of patients is small, and while it looks promising, I realized that I didn’t want to die in an attempt to get the procedure. I know of people who have gone to other countries to get this procedure, and have gone to great lengths to raise the money (in excess of $100,000) to do so. Not only am I unqualified to determine if protocols done anywhere are best practices, I’m also not fluent in any of the languages spoken where some are having HSCT.

Some of these people have died. Some advocates describe that a specific thing happened to this one or that one, and maybe those stories are true. And maybe they aren’t. I really did some soul-searching, and tried to imagine if I pushed to do this. I’m in a foreign country with my husband, when suddenly, I develop a complication. Things don’t improve, and I actually die. Well, then, my husband, having watched everything, has to contact everyone in our family and tell them. He has to get himself (and my body) back home, and deal with everything that happens when someone dies. I’m not trying to be dramatic, but I had to really imagine this. As much as I wish for an improved (maybe even cured!) condition, it seems cruel to put the people I care about most through the wringer. A less dramatic scenario could happen, too, wherein I didn’t noticeably improve, but we’ve spend a massive amount of money, not to mention the emotional capital draining away. And maybe I’d be one of the lucky ones, the folks who swear they’re like new.

Even as I write this, I wonder if I’m giving up too easily. Never stop fighting, right? The truth is that many people with MS profess to be willing to take gargantuan risks to get better. I counted myself among them. I’ve realized that I’m not such a badass, after all.

All of this has served as a kind of “spring cleaning” of my attitude. It’s surprisingly freeing to imagine not questing after another drug! Instead, I’m trying to focus on things that will bring me joy, as well as new “treatments” that I can control. I’m fortunate that we could afford to buy a Freedom Chair, and that allows me to ‘walk’ our neighborhood. I recently signed up for equine therapy and am looking forward to being outside on the back of a horse. Perhaps most telling of all, I found a book that has given me a lot of hope. I know I’ll still follow everything related to MS, I’ll research it and ask my doctor about it. Other people may push hard for something to get better, and maybe that’s fine for them. I’ve decided to focus on the here and now and the known.

Social Benefits

Posted on June 13, 2016 by Angel Blair

Sometimes it’s really difficult to maintain relationships and stay social with others around you. This can be due to a number of reasons and factors. Life in general creates enough hurdles and curveballs that prevent us from staying engaged and interacting with others, at times it’s simply because things get in the way. Having a chronic illness like MS can certainly make staying connected even more challenging as the disease comes with its own agenda and unpredictability. But it’s important to try to stay socially linked to people and support networks around you, because it can be beneficial in more ways than one.

It’s understandable if there are times when you don’t want to reach out to others and engage in social interactions, it happens to everyone. There are moments where we just want to be alone and process things on our own. However, making ties and maintaining relationships can create added benefits to one’s life. Positive connections can help to boost your mood and attitude, especially when surrounding yourself with encouraging and optimistic people. Staying social can create a sense of cohesiveness and camaraderie with others. These bonds may form even stronger if the same types of values, goals and experiences are shared—or if they are not, there is infinite respect in the relationship to appreciate these differences.

Having a chronic illness can sometimes cause feelings of isolation and separation for those affected—a feeling of being alone in what’s happening because others do not know or understand the condition. That’s when connecting to others who have similar backgrounds or experiences can help. Sharing the same types of feelings, thoughts and hopes with others increases a sense of belonging and validation in knowing you’re not alone in your experiences. Social engagement can help decrease stress levels and keep your mind active which can also aid in improving your overall health. And it doesn’t matter what type of social activity you’re engaged in; whether it’s taking a walk or ride, going out to an event, talking on the phone or attending a group, what matters is the connections you’re making and the positive benefits they have on your well-being.

Life Decisions

Posted on August 3, 2015 by Angel Blair

It’s not an easy thing to talk about or consider, but when it comes to making important decisions about the future it’s near the top of the list. It’s life insurance coverage. Yes, it can be a morbid topic to discuss sometimes but it’s one that warrants attention when making plans and preparations for future needs.

Life insurance can help pay for funeral costs, bills and other future financial needs of your family. The nonprofit organization Life Happens provides general information and education about life insurance and what to consider. It can be a challenging issue to face, and for those who experience chronic illness there may be some obstacles along the way to obtaining this coverage.

Some insurance companies may have stricter policies or limitations they impose for those who have been diagnosed with a chronic illness. This can vary according to the company’s policies and rules regarding coverage, and other issues like one’s medical history or current health situation. For these reasons it’s important to research a company and its policies before purchasing a plan. Higher premiums or limited coverage may be some of the barriers experienced by those trying to find a life insurance plan.

Working with your state department of insurance and certified insurance brokers/agents can help you find a life insurance plan that works for your needs. Agents who specialize in ‘impaired or high risk’ life insurance can help as they have experience finding coverage for individuals with medical conditions. The National Association of Insurance and Financial Advisors has a search option to help find agents in your area. Looking for professional support in the insurance arena can hopefully help you attain beneficial outcomes when finding coverage.

*Be sure to use discretion when researching insurance professionals in your area.

Have you had any experience with life insurance planning?

Air Travel Tips for the MS Community

Posted on December 8, 2014 by MSAA

By: Matt Cavallo

As the holidays approach, many of us living with a chronic illness are fretting holiday travel. Maybe you would like to travel to see friends or loved ones, but are hesitant because of your illness. You are not alone. Travel is stressful for everyone. Airports are big, busy and fast-paced. Security lines can be long and the thought of standing, unpacking, and repacking at TSA is enough to unravel even the most seasoned traveler. Compound traveling with the upcoming holiday lines and ticket prices and it may be enough for you to forego holiday travel and just stay home.

If you need to travel during the holidays and you are living with a chronic illness, there are several steps that you can take to ensure your airport experience doesn’t exacerbate your illness. The following steps will ensure that your holiday airport experience is as smooth as possible:

Five Steps to Stress-Free Air Travel for People Living with MS

1. Book your travel early. As a rule of thumb, booking your ticket fifty days in advance will get you favorable ticket prices, preferred seating (unless your airline has open seating like Southwest) and better flight time selections. Business travelers typically book fourteen days in advance, so if you wait to the last minute seating will be limited, as will flights, and the price will be higher.

2. Fly during off hours or off days. Much like morning traffic, the airport has rush hours too. My preference is to get the first flight of the day, even if it means being at the airport before the sun comes up. Airports are generally running once the sun goes up until the sun goes down. Whatever you do, avoid the last flight of the day, especially if you have a connection. If you are on the last flight, you have a greater likelihood of missing connections and then being rebooked on a flight the next morning. Mondays, Thursday nights and Friday mornings are business travel days. Sundays can be busy as well. Tuesday, Wednesday and Saturday are light traffic days and typically have cheaper flights.

3. Notify the ticketing agent or gate agent of your condition. If the airport and airline staff are aware of your illness, you can get wheelchair or transportation service (if necessary), medical clearance to get to the front of the TSA screening line and pre-boarding status at the airline. If you have trouble standing or waiting in line, be sure to tell the agents or TSA that you are a fall risk and have weight-bearing precautions making you a risk to stand in line for long periods of time. The number one goal at the airport is the safety of passengers and if you are a fall risk they will make every effort to prevent you from falling.

4. Limit carry-on luggage. Checking a bag is an extra cost (on most airlines), but that cost is well worth it. Check the TSA website for the items that they allow to get through screening. Make sure that if you have to pack liquids in your carry-on, they are a size that meets the TSA standard. They will confiscate any items that are prohibited for travel. Also, if you have limited strength or range-of-motion, it can be difficult lifting your carry-ons to the overhead storage.

5. Relax. The stress and anxiety of flying has many components that are out of your control. Stressing over the things you cannot control during air travel can be enough to make you sick and ruin your trip. If you follow the four preceding steps, you will be able to minimize most stressful airport situations. Unforeseen stressors like weather delays, mechanical failure and gate changes are situations that you cannot predict. If you can relax and take these steps into mind, knowing that whatever unforeseen delays are out of control, you will feel much better both during and after travel.

I fly a lot. Four out of my last six flights have had some kind of issue. I was delayed three hours on a one hour flight to Palm Springs. They loaded the plane, only to unload it and switch us over to a new plane after the delay.

Another time, I arrived in Detroit with plenty of time to make my connection to Akron, but there was no gate available. They said they notified the gate agents, but when I finally arrived at my transfer gate after a half hour delay, the gate agent had just shut the door. And even though four of us were standing there, she refused to open it or hold the plane per policy.

In this case, I didn’t take my own advice. I was on the last flight of the day and they couldn’t get me to Akron until 3:00 PM the following day. I had a speech in the morning, so I had to drive overnight and got to Akron at 4:15 AM. I was tired and groggy, but luckily able to caffeinate myself enough to give a great speech. Even though it worked out for me, the stress and delay were not worth going through that again.

As always, my advice comes from my mistakes. As a seasoned travel, I understand the do’s and don’ts of air travel. I hope that these steps help to make all of your air travel stress free. Safe travels!

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

Communicating Effectively with MS

Posted on July 30, 2014 by Samantha Schech

By: Matt Cavallo

One barrier to accepting that you are now a person living with multiple sclerosis is communication. When I was diagnosed with multiple sclerosis, it seemed that every conversation I had ended up being about my MS. Whether it was family, friends or co-workers, inevitably during the conversation the person I was talking to would pause and ask, “So, how do you feel? You look great.”

While these conversations were well-intentioned, no one picked up on the fact that I didn’t want to talk about my disease. All I wanted was to do was have regular conversations about sports, work or the weather. The kind of conversations we would have before I was diagnosed. More and more I found myself avoiding conversations rather than reliving my diagnosis over and over again.

This was causing a tremendous amount of stress in my life and that stress was affecting all the relationships in my life. Whether it was at work, friends, family or my wife, all these relationships were suffering as a result of the breakdown in communication. I then realized that I wasn’t going to be able to control the way the people talked to me about my disease. If I wanted to end the stress of talking to people about MS, I was either going to have to cut everyone out of my life or change how I communicated my illness.

For me, change does not come easy. One of my 7 Steps to Living Well with a Chronic Illness, is Learning to Communicate Effectively. I believe that when you are diagnosed with a chronic illness, like MS, you go through five stages of grieving: denial, anger, fear, grief and finally, acceptance. Learning how to communicate effectively is what helped me go through these stages. Instead of losing relationships because of my MS I started to make changes that allowed me to accept my MS.

Excerpt from 7 Steps to Living Well with a Chronic Illness
Rediscovering My Purpose

I remember sitting in my doctor’s office in the spring on 2007. I had previously shared with her a draft of my memoir, The Dog Story: A Journey into a New Life with Multiple Sclerosis. She loved the passion in which I describe my writing. She said that I had an articulate, succinct way of telling my patient experience story. She also said that there was an opportunity to share my story at an upcoming patient support group meeting. Without thinking about it, I agreed to speak at the meeting.

Then on my way home, a rush of anxiety and fear overwhelmed me. What had I agreed to? I had never given a speech. I didn’t know what to say or where to start. When I got home, I talked to Jocelyn about the upcoming speech. Given all that I had been through with my disease process, she thought that it would be good for me to attend the support group in general. She also thought that I would be good as a speaker. I was skeptical…

… I put on a blue blazer, a button down white shirt, a pair of jeans and some blue tennis shoes. My cousin came with me to film the event. As we drove, the butterflies started to mount in my stomach. I walked into the hotel lobby and followed the signs to the meeting room for the support group.

In an instant I had forgotten everything that I was going to say. I started sweating and paused for what seemed like an eternity. All eyes were on me and the projector beam was like a white hot piercing spotlight in an interrogation room. The doctor introduced me and I walked to the front of the room, raised my right hand and waved.

“Good afternoon everyone!”

I collected myself and began again. Eventually I started to feel my rhythm. The sweat was no longer pouring and I found my confidence and timing. The crowd even erupted with laughter when I interjected a joke. I was surprised. It was a subtle joke, but they got it. When that happened, the words started rolling off my tongue and I told my story better than I ever had rehearsed it. The audience loved it. Everyone came up to me afterwards and said how much my talk meant to them. I was touched.

Looking back, standing up in front of that crowd and sharing my story changed the way I felt about communicating my MS. Up until that point, I was not comfortable talking about MS at all. And it wasn’t because I was sharing my story in a front of a room full of people that caused the change in me. It was everyone in the audience who shared their story with me after the talk that helped me understand that I wasn’t alone. People shared similar experiences and how hard it was to talk about their illness. Since that day, I have made it my mission to spread the word about living with MS.

If you are going through difficulty with you MS or having a hard time accepting your diagnosis, it is OK. You are not alone. Learning to communicate your story of living with MS will help you in accepting your condition. Once you learn how to effectively communicate your story with MS you will find that you are not alone and that you really do look great!

I’m being followed by a Moon Shadow

Posted on February 28, 2014 by MSAA

By: Matt Cavallo

When I was diagnosed with MS in the spring of 2005, I was completely devastated. In my darkest hours, I believed that my hopes and dreams were over. I was convinced that I was going to lose my job and wouldn’t be able to pay any of my bills. I thought that Jocelyn, who was only 27 at the time, should leave me and start over with someone who didn’t have a chronic illness. I didn’t think it was fair for her to care for a sick man at such a young age. I also didn’t think that we would be able to have children. Not only was being a dad a dream of mine, but I didn’t want to deprive Jocelyn of the joys of motherhood. Or if we were able to have children, I didn’t want to be a burden on the family and have my kids growing up with a disabled father.

I stayed in this depression for months after my diagnosis. I built a wall around me and pushed everyone out to the periphery. Multiple sclerosis had changed me. The man in the mirror no longer looked like me. My spirit had been drained and replaced by a pale, sad man with raccoon eyes. Not only did I not look like myself, I wasn’t acting like myself either. I was becoming short with people and increasingly negative. Other times I would be quiet and retreat within myself. Being an extroverted conversationalist, those around me at the time couldn’t figure out why I wouldn’t carry on a simple conversation.

A lot of it had to do with how I felt the world around me perceived me. Many people who talked to me after my diagnosis weren’t sure what multiple sclerosis was and expected me to be in a wheelchair when they saw me. Others would say positive things like, “you look great” or “it could be worse”. Most compliments ended up making me feel worse and more isolated. I felt like no one, not even Jocelyn, understood me. I felt like I was alone on an island and that no one else on the planet knew what it felt like to be me.

As soon as I was able to operate a car again on my own, I drove by myself to a beach I had often frequented as a child. I needed to be there by myself, alone with my thoughts. I sat behind the wheel of my Ford Ranger in a parking space near the beach wall and looked out towards the ocean. Trying to make sense of my diagnosis, I watched the waves crash.

Between the sound of the waves, a song popped into the jukebox of my mind. It was a familiar song, one from my youth: Moon Shadow, by Cat Stevens. I started humming the lyrics to the chorus, but couldn’t remember the words. I needed to know why I was thinking about that song at that moment. I sped off toward my parent’s house and grabbed the Cat Steven’s Great Hits CD from their collection. I then got back in the truck and drove with Moon Shadow on repeat.

I listened intently to the song and concentrated on the message behind the lyrics. The lyrics spun a story of a man who lost his legs, eyes, hands and mouth. It struck me that I could lose these same functions because of MS. I realized that the initials of Moon Shadow were MS. Then it hit me: I was being followed by a Moon Shadow. A wave of emotion hit me. I was too young to be disabled. There was so much I still wanted to accomplish in life. I felt lost and scared for what my future held.

As I listened to Moon Shadow for the seventh time in a row, my panic turned to calm. Although the man in the song knew he could lose all these physical functions, he was going to be alright. That was the first time I realized I’m going to be alright too.

I was still too overwhelmed at that time to communicate my fears and feelings to others, but I did start to journal and capture my emotions on paper. Slowly over time my notebook of blue-lined paper transferred into my memoir, The Dog Story. The Dog Story gave me a voice and the confidence to help others who were living with a chronic illness and experiencing the same things that I did. I want other patients to know that they are not alone. Most importantly, I want to share a message about hope, the powers of love and finding strength in your darkest hour.

Today, I no longer feel ugly, isolated or alone. I am living a life that I never dreamed possible. Jocelyn never left me despite my attempts of pushing her away. Now, we have two beautiful boys that our world revolves around. I am the dad that I always wanted to be coaching their baseball teams and doing normal dad stuff. My career is helping other people like me and using the story that I was once ashamed to tell to inspire others that if I can do it, they can too. I still walk my dog every day, whether I feel that I am strong enough or not. And while driving during time of quiet reflection, I still find myself humming along to Moon Shadow. And I am thankful.

Caring for You When You’re Caring for Someone with Multiple Sclerosis

Posted on August 19, 2013 by Angel Blair

Being a caregiver doesn’t always mean having time to take care of yourself, but at times it is exactly what’s needed in order to maintain your own wellbeing. Yes, it may not always fit into your schedule while taking care of others, but it requires some consideration so that you may carry out these other responsibilities. As a caregiver, self-care means having to make time during the busy day to do something for yourself. For some this is difficult to achieve or even fathom, because the person being cared for is your top priority. But, if possible, you may be able to make minor changes or tweaks to a routine that creates the time and space for this much needed self-care. Though caregiving can be unpredictable due to the changing nature of illness, it is important to take advantage of times where you can be taken care of too. Here are some suggestions to find these moments of self-care:

Take rests when they rest.
Eat regularly! Eating meals together can have an added quality time component too.
Venture outside of the home when you can. Running errands, going shopping, or even just taking a brief walk can provide some alone time needed to rejuvenate yourself (To search for respite resources in your area, see the ARCH National Respite Network and Resource Center, http://archrespite.org/home).
Talk! Caregiving can be an overwhelming and emotional journey, so if you have the opportunity to talk or vent about your experiences, do so. If you would like an objective third party to listen who’s not a family member or friend, it may be helpful talking to a counselor/therapist about your experiences in order to safely and effectively express your feelings in this role.

Caregiving is no easy task. It takes a lot of hard work, determination and commitment. So while you’re busy taking care of others, be sure to remember you, and that sometimes you need care too!

Caregiver Recognition

Posted on August 12, 2013 by MSAA

By Matt Cavallo

I remember the feeling to this day. You know that sinking feeling in the pit of your stomach when something is happening that is outside your control. I was lying in my hospital bed, my wife and family surrounding me looking hopelessly as I drifted in and out of consciousness. The entire time I was thinking, “What did they do to deserve this?”

Everyone was handling the news differently. My dad told me that he met some people with MS that were hiking mountains and playing tennis. My mom was at church everyday holding community prayer to find a cure for her son. I even had a friend tell me that drinking Pedialite would regenerate spinal fluid after the spinal puncture somehow.

Then there was my wife, Jocelyn, standing steadfast by my side. Friends and family came and left the hospital, but she stayed each minute. As I looked at her, I believed that the hopes and dreams we had for raising kids and enjoying the family life were dashed at twenty eight years old. I was wondering if I was even capable of having children with the Transverse Myelitis rendering me without function from the waist down.

Eight years later, Jocelyn is still by my side. Through each MS exacerbation, treatment and therapy she has been there always. At times, her role as my caregiver has been a challenge. When I had my cervical fusion, she had to help me with things like bathing and getting dressed. She was providing my care while taking care of a two year old toddler and a newborn.

There will always be challenges for those who care for a person with a chronic illness. There are also resources that can help. Even though Jocelyn and I have achieved a pretty normal life despite living with MS, we are always looking for information to ensure this quality of life continues. A great resource for care givers is the Spring 2004 Motivator article, Caring. Caring provides helpful tips and resources such as safety, diet and stress for those caring for a person living with a chronic illness like Multiple Sclerosis.

Last week, my wife celebrated her birthday and each year I am more and more amazed with her. All my fears back in that hospital bed have disappeared because I know that she is there for me. We were able to accomplish all our hopes and dreams and today are living the family life we always wanted.

Happy birthday, Jocelyn! You are an amazing mother and caregiver. I don’t know where I’d be without you! Thank you so much for being there every day and providing the support and care I need to help me in my fight against MS.

At the MSAA, we would like to hear from you. Please take this time to comment and thank the person in your life that has been there for you on your journey.

Matt Cavallo

For more information about My Story, please visit me at:

http://mattcavallo.com/blog/

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