Multiple Sclerosis (MS) is an incurable autoimmune disease that affects the central nervous system – the brain, spinal cord, and optic nerves.
For reasons not currently understood, the body’s immune system begins attacking the myelin sheath that protects nerve fibers throughout the body. The damaged protective coating leaves nerve cells exposed, disrupting the transmissions that run through these pathways. The result is the potential for loss of function throughout the body; no muscle or nerve is out of reach of MS.
Every patient’s journey with MS is different. The disease is highly capricious, attacking nerves randomly without warning. Approximately 85% of MS patients have relapsing-remitting MS, meaning that symptoms appear during relapses and then go away. The course of the disease is unpredictable; no one understands what triggers relapses, and no one can predict how long the disease will take to progress or what limitations await in the future. As a result, MS often leaves newly diagnosed patients feeling lonely and adrift; facing a lifetime of ever-increasing disability can make it seem as if the world has crumbled with no hope of restoration. Science and medicine hold very few answers, offering only medical treatments that may or may not alter the course of the disease or improve the symptoms of a relapse.
As a result, most MS patients turn to various support groups to find additional information, support, and connections to help them navigate the challenges of life with MS. Sometimes the best, most satisfying source of help is another person struggling with the same issues. If you or someone you love is living with MS, the following information will help you find resources to make the journey feel less lonely and to provide much-needed hope in a difficult situation.
Types of Support: An Overview
MS patients have a range of choices when it comes to seeking out additional support. In a very general sense, support groups can offer the following:
- A sense of community and a place to share your feelings, concerns, and questions with others who are in similar circumstances. These groups are a safe place to share and be understood.
- Access to a wide range of services to help MS patients. These groups provide educational tools and supply connections to resources that offer assistance to MS patients.
- Links to organizations that are working to accelerate research into MS, where patients can educate themselves on the latest information about their disease as well as share their experiences in order to assist researchers.
National and local groups are available; MS patients can connect with one another in person or online. Whichever way MS patients choose to connect, the result is the same: feelings of isolation and despair dissipate as the therapeutic nature of genuine communication and understanding takes effect.
Resources to Get You Connected
Support groups for MS patients abound; there’s no shortage of choices, so folks with MS are certain to find a group, or two or three, that suits their specific needs. Here are some great online resources to get started:
The National Multiple Sclerosis Society
The National Multiple Sclerosis Society’s mission is to eradicate MS. To that end, they fund research, provide MS education, and provide programs and services to help MS patients and their families. On their website, you’ll find links to the following:
- Library of Educational Programs You’ll find magazines, articles, webinars, videos, and more dedicated to providing comprehensive MS education.
- Support links to help you connect with a national MS navigator, large online support groups, or local groups in your area.
- Advanced Care resources to help patients identify ways to make their situation better, even in advanced stages of the disease.
- Local chapters where you can meet new people and participate in events in your area.
You’ll find these resources and many, many others at the National Multiple Sclerosis Society website.
MSConnection.org is an online social network for people living with MS and their friends and family. Here, patients, caregivers, researchers, and the medical community can connect in a safe, secure environment to discuss their experiences with MS. Once you join, you can participate in online discussions about a wealth of topics such as dealing with a new diagnosis, how to manage nerve pain, or what to do when your face tingles. You’ll also find groups for specific populations, such as Young Adults with MS, Moms with MS, or Veterans with MS. You’ll also find resources to connect you with one-on-one peer counseling to get personalized support for your struggle.
The Multiple Sclerosis Foundation Facebook Page
This is another social media platform meant to facilitate connections for MS patients. It’s a great place to ask questions about specific challenges and get answers from patients who’ve had similar issues. For example, one user expressed concern about handling the heat on an upcoming family vacation. Members of the group were able to direct her to a cooling vest that would keep her comfortable so she could enjoy activities with her family.
These are just a few of the many resources available online to MS patients. If you are struggling with MS, rest assured that you are not alone; others are in this fight with you and are available to help you function optimally in whatever your circumstances may be. Opening yourself up to receive help from a support group, whether online, in person, or both, gives you access to tools and resources you cannot imagine and will help you shape the course of your life with MS.
Getting good home care is also an important facet of living well with MS. 24 Hour Home Care provides specialized in-home care to patients struggling with MS. Our caregivers understand the struggles MS patients face and are prepared to provide compassionate, skilled services such as help with exercise, assistance with light housework, nutrition assistance, medication management, and other tasks that can pose a challenge for MS patients. MS patients also benefit from their connection to their caregivers; relationships and regular human contact enhance mental and emotional health. Contact us today to find out about our MS care services.