Generations offer connection with those before us, with us and after us.
When age groups are categorized by generations, it’s interesting to see how birth year and world events influence life circumstances and outlooks. In the United States of America, the generally accepted generations include the Lost Generation, the Greatest Generation, the Silent Generation, the Baby Boomer Generation, Generation X, Millennials, Generation Z and Gen Alpha. It occurred to me that people with Multiple Sclerosis could also be considered as living in other various generations depending on how old we were at first symptoms and diagnosis, the year we were diagnosed, and the understanding of MS and available treatments during early adulthood.
It was the longest three minutes of my entire life. Tik, tok, tik, tok. I looked at the timer on my phone like I couldn’t peel my eyes off it. My nerves were an all-time high, as I took a deep breath and looked over at the nightstand where the pregnancy test lies. I saw the words “pregnant” on the stick. I have never felt so much joy and excitement while being downright terrified at the same time. I immediately called my husband and told him the news. In all fairness, he told me to wait until he was home from a business trip in California, but I had to take the test that day. We were both ecstatic.
Wellness is important at every age, especially for those with MS. While our needs naturally change over time, self-care becomes increasingly important as we enter the later stages of life. Aging is uniquely personal. While some may still have the mental and physical capabilities that have kept them independent, others may need additional support to complete daily tasks. Understanding our needs and having access to supportive services and devices can make a difference in our quality of life.
Mobility and independence go hand in hand. Having the necessary equipment may allow an individual to remain living independently for as long as possible. As we age, our balance and physical strength decline. While exercise and physical activity are typically recommended to stay healthy, falls may be a frequent concern. Mobility devices and assistive technology may assist with daily tasks, but sometimes specialized equipment may be needed to fully meet an individual’s needs. While MSAA’s Equipment Distribution Program offers equipment such as walkers, canes, and grab bars, some people may require additional specialized devices to fully meet their needs, such as Hoyer lifts and hospital beds. Occupational therapy and physical therapy may help evaluate our needs and help us adapt.
Daily living activities may be especially challenging for those who may be experiencing cognitive decline or don’t have care partners for assistance. Homecare may offer in-home services to help with these tasks, such as light housekeeping, laundry, and meal preparation. A limited support system may also impact socializing. The benefits of socializing are undeniable. It keeps our minds active and is important for cognitive functioning and our emotional well-being. Adult daycare services may be a great resource for those who would like additional social activities outside their home. These services are provided to older adults in a community setting and typically offer a range of events and activities like trivia games, painting, or group conversations.
Planning becomes increasingly important when taking into consideration the specific needs of someone with MS. It can be overwhelming to deal with medical expenses, housing modifications, transportation, and other unexpected costs. Navigating health insurance and Social Security benefits can be complicated, and becoming familiar with government benefits and local and national organizations may ease some of the stress.
For those who would like to explore their local resources, consider the following:
Center for Independent Living: For those looking for additional support and resources, your local Center for Independent Living may be able to offer a variety of services to promote the independence of people with disabilities and those who are older. Services may include information and referral, independent living skills, individual and systemic advocacy, and equipment loan closets. The ILRU Directory of Centers for Independent Living (CILs) and Associations can be found by visiting https://www.ilru.org/projects/cil-net/cil-center-and-association-directory.
Eldercare Locator: The Eldercare Locator is a public service of the U.S. Administration on Aging that connects you to services for older adults and their families. Their specialists can assist with information about support services, housing, elder rights, insurance and benefits, health, and transportation. The Eldercare Locator can be accessed by visiting https://eldercare.acl.gov/Public/index.aspx.
During MS Awareness Month, MSAA has been releasing a variety of programs and resources for the MS community. This year, we focused on the theme “Life with MS: Different Stages of the Journey” with programs related to: Pediatric MS, Young Adults with MS, Family Planning and MS, and Aging Well with MS. These topics explore the journey of the MS community and their life with MS from diagnosis and throughout their journeys.
Family planning is an important aspect for people with MS, as hormonal changes during pregnancy and postpartum can impact the course of the disease. It is crucial for individuals with MS to discuss their family planning options with their neurologist and obstetrics and gynecology (OB/GYN) to make informed decisions about their reproductive health.
Having a child with an illness is any parent’s greatest nightmare. MS being an unpredictable and progressive disease can invoke a lot of emotions for the whole family once a diagnosis has been established. Hug your child from time to time and let them know that it is going to be okay. Give them the reassurance that you are by their side no matter what. Be your child’s greatest cheerleader and encourage them to continue with their regular activities to keep them engaged. Practicing physical activities, getting adequate sleep and following healthy diet patterns can have a huge impact on a child’s MS journey.
Young adulthood is without a doubt a fun and exciting time of life. It is a time of adventure, embracing independence and navigating life. It is also a time of pivotal life moments; graduating college, buying a first home, getting married and establishing a long-term career. This is also the period of life where Multiple Sclerosis is most commonly diagnosed. Although MS can occur at any age, onset usually occurs in young adulthood.
Coping with an MS diagnosis as a young adult, and at any age, is challenging and can also be confusing. Having to make complex medical and disease management decisions at a young age doesn’t exactly come naturally. It’s critical to engage in shared decision making with your doctor and embark on a journey that is right for you. Shared decisions will spark ownership over your health and increase a sense of control over your diagnosis.
MSAA is proud to introduce our 2023 Art Showcase!We received numerous submissions created by gifted artists from across the country. Take a moment to look through this year’s Art Showcase by visiting our online gallery.
“I have been painting for a few years now. Learning something new always seems daunting to me with my MS cognitive issues and physical pain. I paint to free my focus from my frustrations into something creative and potentially beautiful. I use it as therapy, taking a short break from my reality and expressing my pain or happiness on canvas.”
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.