Remembering the MS Support People

Posted on October 27, 2014 by MSAA

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.

The Impact of MS on Everyday life

Posted on September 24, 2014 by MultipleSclerosis.net

Earlier this year, MultipleSclerosis.net conducted an on-line study called the MS in America Study (MSIA), which aimed to gather information from people who have been diagnosed with multiple sclerosis. The study was conducted with a goal of gaining a better understanding of the current status and trends in patients with MS. The survey covered a broad range of topics, including diagnosis, symptoms, treatment, and living with MS. A total of 6,202 people started the survey, of which 5,710 were eligible (diagnosed with MS, at least 18 years of age and were either US residents or US citizens living abroad); 5,004 completed the study.

One key area of interest in the MS community is the actual impact that this disease has on the everyday lives of patients and family members of those with MS. A section of the MSIA study asked participants a series of questions that focused on everyday life with MS, and the results are quite compelling. Of 5,514 respondents, the vast majority (77%, n=4,244) said that they are no longer able to do as much as they used to before having MS. Nearly half noted that they are unable to work (43.1%, n=2,374), and a similar percentage of respondents (44.8%, n=2,472) were receiving disability benefits.

The majority of survey participants reported having children (72.5%, n=4,028 of 5,554), and not surprisingly, of those, most felt that MS had impacted their relationship with their children in some way. Check out the pie chart below to see how MS has impacted participants’ relationships with their children:

When asked about their relationship status, most reported either being married (61.7%, n=3,417 of 5,541) or in a committed relationship (11.8%, 653 of 5,541). Interestingly, nearly half (46.1%, 1,872 of 4,063) of those who were in a relationship reported being in that relationship for 21 years or more. Similar to the impact of MS on relationships with their children, most participants felt that MS had an impact on their relationship with their spouse or significant other. Nearly half (43.5%, 1,767) reported that MS had “a little bit” of an impact, while 38.7% (n=576) responded either “quite a bit” or “a great deal.” Only 17.7% (n=721) of respondents felt that MS didn’t have any impact on their relationship. Interestingly, an analysis of these data showed that the length of the relationship did not correlate with the level of impact that MS had on that relationship.

Because MS can impact a person’s life in many ways, it is critical that patients have a strong support system in place to help them cope with this condition. MSIA participants were asked some questions related to their support networks, and the majority (58.7%, n=2,941 of 5013) reported having a loved one who is actively involved in managing their MS. Support networks include spouses, children, parents, friends, significant others, and other relatives.

Of the 2,941 people who responded to the question, “How does your caregiver help you manage your MS?,” the majority (74%, n=2,180) said that their caregivers help out during an exacerbation, while most said their caregivers help out with transportation to and from appointments, and many also receive help from their caregivers with managing their medication.

Fortunately, in addition to loved ones, there are many other resources available to provide support for people with MS. Over 87% (4,267 of 4,881) of those in the MSIA study said that they rely on MS-specific websites to learn about or manage their MS, more than half (68.8%, n=3,357) read MS magazines/publications as a resource, and many (45.2%, n=2,204) also use social media outlets, like Facebook, for support.

Results of the MSIA study confirm that the impact of MS on the everyday lives of patients and loved ones is significant, and that there is great value in the support systems that are available. To read more about this study and to see additional results, click here.

Tell us more about how MS has changed your life! Who and what do you rely on for support?

My Silent Hero

Posted on August 20, 2014 by MSAA

By: Sheryl Skutelsky

After years of having every part of my body in pain at various times through my twenties, I’ll never forget the day in October 2001 when I finally heard those words, “You have multiple sclerosis.” I didn’t yet really know what those words meant, but I was relieved to finally have a name for what doctors had been telling me for years was just stress.

I went home that day to look MS up on the computer, and I have never stopped learning. Knowledge is power, and I truly believe that my attitude has a great deal to do with how I live my life with MS.

I was very excited when I was offered the opportunity to write for MSAA because it meant I could reach more people with the valuable lessons that I’ve learned over the years.

I’ve been blogging about MS now for years, having covered topics that range from explaining what MS is all about to how to deal with summer heat. However, I have never written about the person that has been my rock through all my ups and downs.

My partner not only has to imagine what it’s like each day for me to deal with pins and needles, numbness, shooting pain, aching, dizziness, nausea, and overwhelming fatigue, but she also has to live with the same uncertainty of waking up each day and not knowing if we can do the things that we had planned. She is the only one that truly understands how I can look so good on the outside and feel so miserable on the inside. She gets it when I have to cancel plans because I did too much the day before.

When we met, I was relatively healthy. She did ask me what hurt every day. It got to the point where she asked me if my left earlobe hurt because she was just trying to find some part of me that didn’t hurt, but she didn’t sign up for a chronic disease. That news came as a shock to both of us.

Thanks to MS, I’ve learned to truly take one day at a time. I wake up grateful for each day that I can walk, but I also wake up grateful that I have someone in my life that will stand by me no matter what. It would do us all good if we remembered to let our significant others know how much we appreciate all that they have done for us by sharing in living with the uncertainty of life with MS.

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/

*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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