My Life with MS

Posted on February 4, 2015 by MSAA

by Shannon Loftus

I am a stay at home, work at home, home-schooling mom to the world’s most awesome child – my son Nathaniel. Yes, I have multiple sclerosis, and it does rule my life. But, every day that I wake up and can see my son and husband, can move my limbs, even if in pain, is another day I am thankful for.

I was officially diagnosed with multiple sclerosis in the fall of 2009, although the symptoms had been ongoing since I was a freshman in high school. With this diagnosis, I also found out I had a brain tumor that, of course, during all the diagnostic testing was the only other option for the symptoms I was experiencing. Fortunately, the tumor is on the pituitary gland, benign, and not growing. I recall that on the day I was diagnosed I had a laugh-attack right there in my neurologist’s office. Multiple sclerosis is not funny by any stretch, but I found the double diagnosis to be downright morbidly hysterical at that moment. What luck! Shortly thereafter came the diagnosis of epilepsy, followed by spinal stenosis. Despite all of these diagnoses, I struggle through it all with my head held high (sometimes), staying at home, working at home, and home-schooling my most precious gift that keeps me going – my son. I am also a co-leader of a multiple sclerosis support group here in my hometown. It is a pretty fun bunch of folks, MS aside!

MS has thrown a lot at me. I have been blind in one eye and half blind in the other, at the same time. I have been nearly unable to walk, hobbled and I use a cane more often than not. I have been hospitalized, and I can no longer function as the field archaeologist that I once was. I am losing the use of my left arm, and have left side weakness. The stenosis of my spine has made walking for more than a hundred yards nearly impossible. Standing, sitting, laying down are all painful.

I have adapted, not by choice, but out of necessity. MS sets the pace, so I shifted to private consulting from home, and while not my dream job, I am rewarded with a gift that I know I will be forever grateful for – as much time spent with my son as possible, the opportunity to watch him grow while my eyes still work, and the special time we get to spend snuggling up while he still thinks mom is cool, hanging out at the movies, and hitting the pool in the summer.

I have also experienced depression. I once laughed at the notion of MS and depression going hand in hand. I was so wrong and I was very humbled by my year and a half long journey through a tunnel of personal darkness. I now have immense compassion for those suffering depression, no matter the cause.

I am honored to be able to share with others my journey of life with MS. It is not always fun, but it is what it is. I try to find the humor in life, and frankly the trifecta of illnesses I live with provides a bottomless well of material in that regard. I would love to share the ups and downs, ins and outs, and the overall experience of what it is like to have MS. The disease affects each of us very differently, and I believe it is only through sharing our experiences that each of us finds comfort, solace, and the ability to keep fighting.

Be Thankful for the Day!

-Shann-

New MSAA Guest Blogger

Posted on January 26, 2015 by MSAA

Meagan Freeman

I am thrilled to join the MSAA organization as a guest blogger, and I would like to introduce myself. My name is Meagan Freeman, and I am a licensed family nurse practitioner, blogger, MS patient and mom of 6 from Northern California.

I was diagnosed with RRMS in 2009, after experiencing dense numbness of my right torso. This was numbness like no other I had felt, like my torso was not even a part of my body. I was in the middle of my Bachelor’s program in Nursing, working as a full time ER nurse, and a mom of 6 at this time. The diagnosis was devastating, and demotivating. Quitting school was something that I thought about almost immediately, and over and over for months. I tried to ignore those demotivating voices in my head. The ones that say, “you should just stop now. What is the point? Take the easy road, forget it.” I was halfway through my Bachelor’s program, should I quit? I was just going to end up in a wheelchair. Bedridden. Nonverbal. Just like my grandmother. What was the use of finishing school? What was the use of doing ANYTHING now? Images of my grandmother raced through my mind. My maternal grandmother was incapacitated in my memory, due to a long battle with progressive MS. These images were terrifying to me, and I pictured myself in that same state.I thought about quitting school many times, but fortunately I continued.

I finished by Bachelor’s degree in 2010, and began my Masters in Nursing/Family Nurse Practitioner program that fall. It was the greatest challenge I had faced since diagnosis, and I would not be allowed to take “short cuts” because of my MS. This was the first time in my life that I realized that my disease would not grant me any free passes. I would have to achieve and complete this program purely on my own, despite any illness.

An important lesson I learned during the 3 years of higher education I pursued as an MS patient was that we are capable of self -defeat. It would be so much easier to quit, right? On those difficult, painful, fatigue ridden days? It is so tempting to give in and take the easy road, and many people succumb to this path. It doesn’t require MS, either; many individuals find any excuse to give up and take the easy road. You must find that voice that encourages rather than discourages. Find that voice that will carry you through those days. Nothing worth doing is ever easy, so make the choice to be the hero of your own story. You have the ability, now you just need the psychological strength.

On my graduation day, in May of 2012, there was light. Spring, warmth, and brightly colored flowers surrounded me like a renewal, out of the cold winter and into the sun. Every detail of that day is frozen in my memory, never to be erased. The smell of the freshly cut grass, the slow march into the ceremony, the smiles. Like a wedding or the birth of a new baby, this was a day that would live in my mind for the rest of my life, though there was a sense of disappointment along with the accomplishment. There was a pre-graduation let down, and I knew that with the completion of this goal, I would need another. Yes, this was a successful endeavor, but what would be next? For now, I could not focus on anything but that moment. This was a day to spend celebrating, laughing, and feeling a sense of pure joy and relief. Why trouble myself with the future today? Today was a day just to be present.

After graduation, I began to practice in a primary care office as a nurse practitioner. I saw many patients during my day, managing chronic illnesses and performing physicals. I experienced the irony of being both a healer as well as a patient, and some days were not easy. I also began to write more frequently, which was always my lifelong passion. I started to blog, and it was incredibly therapeutic to get feelings down on paper. Today, I have the opportunity to blog weekly on my website, and guest blog for several wonderful organizations. I am happy to be able to pursue these things, and with the support of my husband and family, I hope to continue for many years to come.

Being the “hero” of your own story is the theme of most of my writing today, and I encourage every MS patient to think of life as a story that will someday be told. You have the power to make that story whatever you want it to be, so make it incredible, powerful, and positive. Make that story one that will inspire generations to come. You have the power to achieve anything and everything, regardless of a multiple sclerosis diagnosis.

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

How Small Changes Can Make a Big Difference in the New Year

Posted on January 7, 2015 by MSAA

By: Matt Cavallo

While most people are planning for their New Year’s resolutions, many of us with multiple sclerosis are just trying to feel normal again after all the holiday activities. The problem with the holidays is that they take us out of our normal routines and create financial and emotional stress. When we go outside of our normal routine or have increased stress, we unknowingly put ourselves at risk for an MS exacerbation, or relapse.

Last year I blogged, “Tips for Avoiding a Post-Holiday Multiple Sclerosis Flare”, which can be read by clicking here. Those tips include: developing a financial plan, changing eating habits, exercising, getting back on your schedule and setting attainable goals. You can enjoy the holidays, but it is critical to have a plan to get back on track.

Most times my tips come from lessons I’ve learned the hard way. Instead of taking my own advice last year I tried to be super dad and ran myself ragged. I spent the next couple of months trying to recover from the MS fatigue, was unable to take off the extra holiday weight and had to buy new pants with a stretchy waist band.

You see, you don’t have to wait until the New Year for a do-over. Resolutions can start at any time. Mine was to ditch the stretchy pants. I made sure to start working towards it before the holiday season began. I also made a couple of smart decisions along the way.

I took extra time off to make sure that I wasn’t stressed with last minute running around. Taking care of the gifts ahead of time also softened the financial stress of the season, because the costs were spread out. We didn’t stray too much from our regular diet, but did allow some holiday goodies. I also made sure to take extra time to rest. Taking the time off to spend with my family allowed me to be super dad and catch up on rest.

With all of the planning I did ahead of time, I am much less stressed and fatigued than last year. I am also down a couple of pounds and can ditch the stretchy pants. I’m still not exactly where I want to be yet, but I am working on it. A pleasant side effect of implementing a resolution before the New Year is that I actually believe that I have some attainable goals that I can stick to.

What I learned is that I don’t need a holiday to commit to feeling better. I cannot control what MS does to me, but I can control other things like fitting into my pants. Making small changes can have a big impact on how you feel or how fatigued you are. What little changes are you going to make in 2015?

Thank you for your continued readership and support. Wishing you and yours a happy, healthy New Year!

*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/

Continued Success after Therapy

Posted on October 20, 2014 by MSAA

By: Matt Cavallo

Earlier this month, I wrote a personal story of my positive outcomes with therapy. I utilized Physical and Occupational Therapy, along with Speech Language Pathology to aid in my recovery from neck surgery. This was a scary time in my life, and I was extremely thankful to have each line of therapy to help me overcome my deficits. My personal challenge became what to do once I no longer qualified for therapy visits?

The best way to relate my therapy experience is to talk about my gym membership. I have a family gym membership and make my annual gym appearance sometime in January. Then, I don’t go for the rest of the year. I offer any number of excuses to my wife and kids as I watch them drive off to the gym each Saturday.

The truth is that the only way I would utilize that gym membership would be if I had a personal trainer – someone to look over my shoulder as I exercised that I paid for. Paying for the service holds me accountable and forces me to keep my appointments. I also prefer to work out with a trained professional, who understands my limitations and can design a routine where I won’t hurt myself. The problem becomes I get on a good routine with the trainer, but as soon as I stop using a personal trainer, I stop working out.

This is my same relationship with therapy. While I am actively participating in therapy, I do great. As soon as they give me home exercises, I don’t follow through. I know that the homework given by a therapist is specifically designed to help me functionally, but I just don’t do well when left to my own devices. The problem is that my lack of follow through is detrimental to my health. My neck surgery forced me to change my behavior. Here are a couple of tips that helped me have continued success after being discharged from therapy:

Tips for Continued Success after Therapy:

1. Request clear, written discharge instructions. Your therapist will develop a plan of care that you can continue on your own after you finish all your therapy appointments. Make sure that you get a copy of those discharge instructions at your last appointment.

2. Get a copy of your Home Exercise Program (HEP). Your therapist can provide you home exercise instructions with pictures. These instructions provide a handy reminder of the therapist recommended exercises, as well as a visual reference for how to safely perform the exercise.

3. Make sure you get your questions answered. During your last appointment, make sure that you have a list of questions for your therapist. You will want to make sure that any concerns you have are addressed. There is truly no such thing as a stupid question when it comes to your health and well-being. Even if you think your question isn’t appropriate, you may have a legitimate concern that the therapist isn’t thinking of. I always have my questions written on a piece of paper and take detailed notes.

4. Follow through. Where I am lacking is in the follow through. For my neck, I still have my HEP and discharge instructions. When it tightens up, I know exactly the stretches that help and reference the pictures to make sure I am doing it right. The problem is that if I consistently followed through and strengthened and stretched my neck, then I probably would feel consistently better – just ask my wife!

Therapy is a great start for managing your MS symptoms. Continuing to follow through after you finish therapy is the key to success. Following these steps may help to ensure that you are prepared for life after therapy. Continuing your home exercise program post-discharge will put you in a better position for continued success.

A Personal Story of Positive Therapy Outcomes

Posted on October 10, 2014 by MSAA

By: Matt Cavallo

I had one goal for after my anterior cervical fusion surgery: work as hard as I could to return to normal so I could be the dad I always wanted to be. This was not going to be easy. I had a serious neck injury with bone fragments cutting and flattening my spine with every movement. The pain I experienced was intense. Electric shocks shot up and down my body, freezing me in place whenever I tried to move. Instinctively, I held my shoulders tight together when I moved in order to take the pressure off of my spine, but it also made me look like the Hunchback of Notre Dame.

This was no way to live. My sons were only three and one year old, respectively at the time, and I feared that I wouldn’t be able to be the active, involved dad that I always wanted to be. In my deepest, darkest moments, I was afraid that I would become quadriplegic. Unfortunately, my doctors agreed with my fears and recommended immediate surgery. They said my neck problem was related to an earlier MS exacerbation I experienced of Transverse Myelitis and that even picking up my babies the wrong way could leave me damaged for life.

I was scared. I didn’t want surgery, but I also didn’t want the alternative. In September of 2010, I went under the knife. I didn’t know what to expect, but I was also working for a rehabilitation hospital at the time and received a lot of good advice prior to surgery. When I woke up from that surgery, I followed that advice.

First, I had an evaluation with a Speech Language Pathologist (SLP). While many people know that SLPs can work on cognitive and language deficits associated with multiple sclerosis, many don’t know that SLPs can also help with swallowing issues. My SLP coached me how to adapt my swallowing techniques while wearing a hard neck brace. These strategies helped me adapt during my recovery. My SLP also set expectations about what it would feel like to swallow with the titanium artifact in my neck. Without these compensatory strategies learned from my SLP, my recovery would have been much more uncomfortable and I probably wouldn’t have received the proper nutrition. As a side note, I did consult a Registered Dietician about liquid nutrition options before switching to regular food when I was first out of surgery.

Next, I had an Occupational Therapy (OT) evaluation. Learning to adapt with a hard collar wrapped tightly around your neck is difficult. Trying to dress or clean yourself up after going to the bathroom was impossible for me. My OT worked on activities of daily living (ADLs) including dressing and toileting. These strategies allowed me to remain independent with my ADLs post-surgery. Feeling independent with grooming, toileting and dressing helped my confidence. My wife was already having to dress and change my kids’ diapers. I didn’t want her to have to do the same to me. My wife did really step up and help me when I needed her the most, but my OT gave me the strategies to be as independent as possible during my recovery.

Finally, I had a Physical Therapy (PT) evaluation. First, my PT worked on my neck range of motion, turning from side to side, and rotating my shoulders back into place after all the atrophy associated with being hunchbacked. Then, my PT worked on strengthening my shoulders and neck to ensure that my range of motion and shoulders remained intact after therapy. My PT also gave me home exercises designed to keep the area strong and maintain the progress I made from the therapeutic interventions.

It has now been four years since surgery, and I am happy to report that I have achieved my goal. My quality of life is better now than it was prior to the surgery. I believe that I would not have experienced as much success without the help of my therapists. My PT, OT, and SLP each contributed, not only to my recovery, but also, to the strategies that I learned through therapy which I continue to use today. Most importantly, I am able to be the dad that I always wanted to be. I appreciate every day that I can go out and play with my boys.

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