The MS Journey

By: Gina Ross Murdoch, MSAA President & CEO

Welcome to MS Awareness Month. Each year, MSAA dedicates the month of March to focusing on topics important to the MS community. This month, we will be exploring Life with MS: Different Stages of the Journey. Over the next few weeks, we will explore topics critical to living with MS at varying ages.

We hear that MS mostly impacts those between the ages of 20 to 50. That is the crucial clarifier – “mostly,” but not always. This month, we will touch on the significant challenges of pediatric MS, meaning receiving an MS diagnosis under the age of 18. For example, imagine the challenges of navigating the teen years PLUS the challenges of a life with MS. Imagine being the parent of that teen. I am sure you can see the need for information about pediatric MS and connection with others looking at how to navigate forward.

Once that teen crosses the 18-year-old mark, they are onto the stage of being a young adult. So much happens in life during those years – school, beginning a career, partners, independence. So much happens that it takes a great deal of effort to handle. Again, add MS to those demanding life milestones. We will focus on discussing balance and support as a person working towards their goals and managing their MS, perhaps for the first time on their own. Being a self-advocate and engaging in shared decision-making is important at any age, but it is especially important and could be intimidating, when a young adult is embarking on a new stage of independence.

As we continue the journey and MS Awareness Month, we embark on a discussion of family planning. Deciding if or when to have a family is a big decision and one that takes considerable thought, regardless of gender. Having a family adds complexity to life with MS. During this part of the month, we will explore the questions and thoughts involved and what to consider when deciding on starting a family, how to manage life with MS in the family, and suggestions on how to discuss life with MS with children.

We conclude MS Awareness Month by addressing the important topic of aging well with MS. Discussions around aging with MS have been top of mind for many in the MS community, as living with a life-long chronic condition like MS can be impacted by the aging process as well. As people are generally living longer and want more out of their retirement years, there has been much conversation recently on “what does MS and aging look like?” or “what can aging well with MS look like?” Both are personal questions but important to consider whether a person is looking ahead to their retirement years or is already there but looking at how they want to live their lives.

Regardless of where someone is in their MS journey, there are questions that we look to address, not only during MS Awareness Month but on a continual basis. Most importantly, there is “life” in living with MS. So many key moments – growth, new adulthood, parenting, aging – are impacted by MS being part of the family. You will hear from some amazing people living with MS, care partners, and medical professionals bringing their experience and perspective to the conversation. Over the next few weeks, I invite you to join us in learning and discussing how MS impacts lives at any age. We often refer to the “MS community,” and it is truly just that, a community made up of families looking to live their best lives with MS at many points along their own MS path. I look forward to hearing from all of you during this month and learning more about your journey.

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About MSAA

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with trained specialists; award-winning publications, including, The Motivator; MSAA’s nationally recognized website, featuring educational videos, webinars, and research updates; a mobile phone app, My MS Manager™; safety and mobility equipment products; cooling accessories for heat-sensitive individuals; MRI funding; My MSAA Community, a peer-to-peer online support forum; MS Conversations blog; a clinical trial search tool; podcasts; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.

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