Remembering the MS Support People

By: Sheryl Skutelsky

I’ve personally switched MS medications 3 times over the 14 years since I was diagnosed. It was a little over a year ago that I went for monthly infusions.

I would walk into the infusion center, and no matter how hectic it seemed at times, there was Kristen always smiling. Especially in the beginning, this was a place of fear for me. My veins saw a needle coming, and they would literally slide to the side. Kristen had the patience of a saint, and the most amazing bedside manner.

Unlike so many, I wasn’t doing well on the medication. I began to experience severe joint pain, and I finally had to give up and move on to the next medication.

However, I will never forget the difference it made in my life to have a nurse like Kristen. She cared about each and every one of us, and I swear she could do 20 things at once and get them all right.

To this day whenever I visit my neurologist, and he says that I need bloodwork done, I’ll patiently wait until Kristen has a free moment – not just because she’s the only one that can find my vein on one try, but because her smile can light up anyone’s bad MS days.

*Sheryl Skutelsky, diagnosed in 2001, has learned how to live positively with multiple sclerosis. Sheryl’s passion has always been graphic design. Her symptoms have become an inconvenience to her work, so she now uses her skills and creativity to reach out to others about MS. Sheryl is a patient advocate speaker for Biogen Idec. She also writes for Healthline.com, and she is an Internet radio host with her own show, Fix MS Now. Check out her Fix MS Now page on Facebook which has more than 10,000 followers. You can help raise MS awareness one “like” at a time by visiting: http://www.facebook.com/fixmsnow.

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MS in America – The Use of Oral Therapies for the Treatment of MS

In our September article we shared some of the key findings from The MS in America Study (MSIA), highlighting some of the ways that multiple sclerosis (MS) impacts the everyday lives of those with this condition. In addition to collecting information about the impact of MS, we also asked people with MS to tell us about their treatment, including what they’ve tried, if they were satisfied, and what they are currently taking for their MS. Because oral therapies are relatively new to the treatment armamentarium, we decided to take a closer look at the use of oral therapies for MS in our community.

As one would expect, infusions, interferons, and other injectables are still used by a majority of MS patients. However, results from MSIA, which was completed by more than 5,000 eligible respondents, demonstrated that oral medications for MS are used by nearly one third of patients who have relapsing-remitting MS (RRMS), and more than 50% of people using injectables are considering switching to an oral medication!

We asked all survey participants how long they have been on their current therapy, and as one would expect, those who were taking oral medication for RRMS reported being on that treatment for a shorter period of time than those who were on other treatments (like injectables or infusion).

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Interestingly, the vast majority (80%) of people who had ever taken an oral therapy for MS reported that they were still taking an oral MS treatment.

We also asked participants several questions about switching therapies. Most of those who reported switching from injectables noted that they did so due to needle fatigue and/or issues of tolerability. Other reasons included seeking better efficacy, convenience, safety, and cost, among others.

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Many MSIA participants who had not recently taken an MS treatment reported that they had started anew with an oral medication due to a variety of reasons, including dislike of needles, and disease progression, among others.

Finally, of the MSIA respondents who were still taking injectables to treat their RRMS, nearly half (48%) said they have considered switching to an oral therapy. While much remains unknown about the long-term use of oral therapies for MS, it is clear that oral medications for MS play a critical role in how this condition is treated. For more results from the MSIA special report on oral treatments for MS, click here.

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Stopping Mental Health Stigma

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When you have an infection, you call the doctor. When you have a toothache, you call the dentist. But why when you notice a change in your emotional wellbeing don’t you call a counselor? The mental health stigma (or the view of individuals who seek mental health counselling in a negative way) can have a strong enough effect to stop someone from picking up the phone for help. The idea that an individual is perceived in a negative manner just for the use of mental health services sometimes prevents an individual from seeking care.

In the same ways that the doctor helps cure your infection, or the dentist helps fill your cavity, a counselor or therapist can help guide you through the emotional challenge you may be experiencing. However, fear surrounding the thought of being judged or criticized holds strong enough in some individuals that they will not seek out care.

1 in 5 Americans live with a mental disorder such as depression, bipolar, or anxiety disorder according to the National Alliance on Mental Illness and two-thirds of those diagnosed do not seek treatment. Fears of disclosure or discrimination are some examples of why one would not receive care. Helping to stop mental health stigma opens the doors to mental health treatment and care for those who truly need the support.

Tips for Stopping Mental Health Stigma:

1. Educate those around you about mental health.
Example: With MS, the rate of depression is three times higher than the general population.

2. Use positive language surrounding mental health illnesses
Example: Use phrases such as “a person with depression”; correct people who use inappropriate terms to describe a person.

3. Speak up if you feel you have been discriminated against based on a mental health condition!
Example: People with mental illnesses can experience discrimination in the workplace, education, housing, and healthcare.

Please share your tips or suggestions on ways to stop mental health stigma. By sharing the voices of those in need, we move closer to a world where those who need help no longer fear reaching out.

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Continued Success after Therapy

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.

*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/

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What is an Occupational Therapist?

In the field of medicine there are many specialties that often work together to provide a comprehensive approach to patient care. For those dealing with MS, these specialties can oftentimes blend together, as the symptoms of the disease warrant concurrent methods of treatment. Trying to understand and recognize the responsibilities every specialist has in a patient’s care can be challenging, and in the rehabilitative treatment domain, the role of occupational therapy may be lesser known than other forms of therapy.

Occupational therapy (OT) focuses on treatments used to rehabilitate activities of daily living for individuals with physical, mental or developmental conditions. Working to develop and improve the skills needed to maintain day-to-day living and work habits are the goals of this therapy, with the client being at the forefront of treatment. Things like bathing, eating, dressing, job performance, driving and financial management are some of the areas of focus OT can impact with intervention. OTs work closely with the client, and many times with the family also to create an environment that’s conducive to the client’s needs; this can include the home, workplace, school, or other settings. Making changes that help modify particular tasks and teaching new skills helps clients regain control over their daily functioning and aids in maintaining their independence.

OTs help to create personalized interventions and treatment plans to help clients achieve personal goals of what they ultimately want to perform in their daily routine. Education is a major component of OT, as therapists and clients alike work together to learn what activities need modifying and how these changes can happen. The OT specialty often works in conjunction with other treatment specialists including physical, speech, and language therapists, in addition to other healthcare and social work professionals to develop an inclusive plan for client care.

If you are experiencing challenges with daily living and work activities, ask your doctor about OT to see if an evaluation is appropriate for you. Your doctor may be able to provide further information about this therapy and if it could benefit your needs. For additional information about occupational therapy, visit The American Occupational Therapy Association, Inc.

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Feeling SAD: Seasonal Affective Disorder

rsz_young_woman_cryingIt is commonly known that MS can impact mood and can cause an increased risk for developing depression and anxiety which MSAA detailed in the Winter/Spring 2014 issue of The Motivator. However, you may be unfamiliar with another condition – Seasonal Affective Disorder (SAD) – which may be something to pay attention to as the seasons change.

SAD is a type of depression which is hallmarked by its “seasonality” generally beginning in the fall and lasting through the winter months. SAD typically tends to creep up as the daylight hours get shorter and the weather gets cooler and the impacts on mood may become more severe as the season goes on.  Like other forms of depression, individuals who experience SAD may experience low energy (fatigue), may lose enjoyment in activities they once enjoyed, may experience changes in eating or sleeping habits, may have persistent sad or depressed thoughts, and may even think of engaging in self-harm. As with other forms of depression, individuals with SAD may benefit from the use of medications and/or talk therapy to help address this issue. One major difference with teasing out SAD from other forms of depression is that individuals with SAD may also benefit from using “phototherapy” or specialized light therapy; a person may even be assigned a specific amount time in their day to sit under the specialized light or lamp to help improve their symptoms.

If you have noticed that the fall and winter seasons tend to impact your mood, or if you have noticed a lower overall mood, please discuss the issue with your treating physician…sometimes just shedding some “light” on a situation can make a world of difference.

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Swim for MS: Give me a T-E-A-M!

With the start of the new school year and a new swim team season, MSAA’s Swim for MS has seen tremendous support. All over the country, swim teams are working together raising money to improve the lives of those living with MS.

Swim for MS encourages volunteers to create their own challenge, such as swimming laps or set distances over a chosen period of time while collecting donations for their personal fundraising goal. These challenges can be done individually or through group swims by teams of young and old alike. The NCMP Aquagirls, a Girls’ High School Swim Team from Iowa, created an event that would push them into swim shape early while creating awareness and raising funds. Their team captain, Rachel, challenged the team to swimming 50,000 total laps during the month of September. They collected pledges in August and September to raise over $1,000 for Swim for MS.

NCMP Aquagirls

NCMP Aquagirls

Lexie and team

Lexie & Team at her Swim for MS event

Volunteers also raise funds through a variety of unique one-day events such as pool parties, water-volleyball tournaments, and cannonball challenges. Unlike more traditional MS fundraising activities, Swim for MS allows individuals with MS at any stage in their journey – from the recently diagnosed to those with limited mobility – to benefit from water exercise and assist in raising donated funds for a vital cause. Lexi and her Swim for MS Team participated in a one day Swim for MS event held at her high school in Indianapolis and raised over $2,800 in September.

Just because October, November, and December are filled with back-to-back holiday parties, doesn’t mean you can’t organize a successful fundraiser! Stay on top of your game by encouraging a team effort for this fun event. Gather your Swim Team for a fundraising event everyone can do together. Show your school spirit by having a friendly competition between team colors, pick a side, and swim your heart out. Winning team gets bragging rights for the swim season!

On our SwimForMS.org website, you can read the profiles of some of our swimmers. They can inspire you and give you great ideas for your own Swim for MS challenge. We would like to thank everyone who has or will participate in Swim for MS!

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A Personal Story of Positive Therapy Outcomes

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.

*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/

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Planning for a Doctor’s Visit When You Have MS

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Being prepared and asking questions may assist in the overall care you receive at your doctor’s appointment. Taking control of your medical care by finding your voice and advocating for your health will help you to feel more involved in your health care decisions.

Well before your appointment, get in the practice of writing down questions you wish to address with your doctor. A journal or binder can be used to keep track of these appointments. Sometimes it is helpful to have one binder for all medical professionals so that you can review notes from all appointments. Dividers or clips can help organize one doctor or specialist from the next. If questions come up for your primary care while you are visiting with the neurologist, you can add them to the section for the primary care.

Before the appointment, prioritize the questions that are more important at that time. Often appointment time is limited, so by prioritizing the questions, you will assure that what is most important to you at that time is what gets addressed.

It can be a challenge to manage the patient-doctor relationship, especially if your doctor is not used to you asking questions. You certainly do not want to come across as aggressive by demanding the doctor answer questions. Before the appointment, make the doctor aware that you would like to discuss some concerns. By being upfront with the doctor, he or she can make sure there is enough time. Some doctors may prefer to follow-up and discuss questions through a phone call or e-mail.

Asking questions is important but so is making sure you hear and understand the answers you get. Taking notes during an appointment can help to clarify things after you have left the office. Having a care partner or family member at the appointment may also help in remembering some of the details of what you heard. If writing is a challenge, perhaps try using a voice recorder (with the doctor’s permission) to help re-play what was said during the appointment.

If you are having trouble understanding or are confused, ask your doctor to explain again. Ending your appointments with a summary can help to ensure that the doctor hears that you have understood the directions or information provided to you.

If there is something you are not sure about, ask for more information. Many doctors’ offices provide brochures, or educational materials that can describe a treatment or symptom. If the office does not provide these things, ask where you may find them. Perhaps you can reach out to one of the MS organizations to learn more about a particular treatment or symptom, or ask for information to be mailed to you.

By taking a more active role in your health care planning and decisions, you may feel more positive about the control you have over the disease.

How do you plan for your trip to the doctor or specialist?

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Adjusting to Change

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Change is something that continually occurs throughout life for all people and to different degrees. Change may have very mild, subtle effects, or very significant effects depending on what’s being altered. Sometimes change can be a good thing, and sometimes not. One of the most difficult concepts to accept about change is that at times you have no control over it. In our individualized society we try to live by the mantra that we control our lives and what happens to us day-by-day, but this is not always the case. Sometimes the unexpected arises and we play no part in its occurrence. An unexpected illness, a loss, or other unforeseen situations are some of the incidences that can transpire due to no control of our own. When the unexpected occurs, what can you do to help adjust and cope with this new-found circumstance, that wasn’t necessarily welcome or planned for?

  • Talk to others about the changes that have occurred. Communicating to trusted loved ones, friends or your healthcare team can help you explore ways to adjust by receiving outside perspectives.
  • Reflect on what the change has affected. By recognizing what’s different you can make your own adjustments that will work for you in your day to day.
  • Explore your support resources. If change has had emotional, physical, or social impacts for you, it’s important to know who you can reach out to for help.
  • Bring focus to things that you enjoy and that you can control in your day-to-day. Make decisions that help to ensure that changes are modified to fit your needs.

Change can take some getting used to, especially if it’s something unpredictable. Though some things are uncontrollable and unforeseen at times, individuals do hold influence over the way they can approach change and react to it. It’s how you make the change work for you that’s significant.

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