Multiple Sclerosis (more commonly known as MS) is a disease that causes a war within the body. It’s very unpredictable and has a different effect on each person.
MS progresses slowly and can be crippling. A person may start using a cane and eventually require a wheelchair for ambulation.
Oddly, there’s no real test for MS. Doctors use certain criteria to diagnose a patient with the disease. Unfortunately, MS can only be treated, but not cured.
Maybe you’ve heard of MS or know someone who has the disease. You may not know what it is, but you can see the effects of MS on the individual’s body.
So, let’s talk more about this progressive illness called MS.
MS and Its Crippling Effects
The Mayo Clinic defines MS as a disease of the central nervous system, which could disable that important part of the body.
The white blood cells attack the nerves, which stops the nerves from communicating with the brain creating internal chaos.
Depending on which nerves are damaged, symptoms could be as mild as tingling in the legs or as severe as being unable to walk. The eyes, mind, limbs, or entire body could be affected.
The Mayo Clinic further states that most people diagnosed with MS follow a “relapsing-remitting” course of the disease.
Symptoms starting and stopping create a kind of roller coaster effect for families. Today things seem hopeful, then a few weeks, months, or years later, discouragement is back.
Although it’s not known what causes MS, several risk factors for the disease have been identified, such as:
- Family history or genes
- Living in colder climates
- Lack of vitamin D
- Preexisting disease or virus
Sadly, MS not only affects the individual with the disease, but it can also impact all aspects of a family’s life.
MS Is a Family Event
The National Multiple Sclerosis Society clearly states that MS is not just about the person diagnosed with the disease, it’s a “family affair.”
Families need to know what to expect and how to plan for the unknown. The loved ones with MS may no longer be able to perform their normal duties, which will impact the roles within each family unit.
MS can cause family confusion, breakups, and financial stress. The children may be affected and need emotional support to get through the process.
There may come a time when a family member will need to become the caregiver for the loved one going through the course of MS. The caregiver could be a husband, wife, parent, child, or close friend.
The National MS Society offers a wealth of information and resources for families of individuals with MS. They also have a community for family members to connect with and a newsletter for children ages 5-12.
Additionally, the National MS Society offers call and chat options to speak with a live person. If you prefer to write, there’s a contact form on the website.
Touched by Special People With MS
Over the years, I encountered four women diagnosed with MS who left a lasting impression on me. To protect their privacy, I’m not using their real names.
First is Rose, a woman who eventually lost her ability to walk. She used a wheelchair for ambulation inside and outside of her home. Rose needed assistance to care for herself and her family.
I remember Rose complaining that a home health aide wiped up a spill with a dry paper towel but didn’t bother to use a wet paper towel on that spot afterward. She commented sarcastically that the aide “was using juice to clean the floor.”
I could almost sense Rose’s longing to care for her own home. What some might consider a small thing was of great importance to her.
Second is Faith, who was a single mother with children. When she was diagnosed with MS, I was surprised. I didn’t notice anything different about her. However, Faith knew something was going wrong on the inside.
Over time, Faith went from walking independently to using a walker to requiring a wheelchair. Despite her challenges, Faith tried continuously to enjoy her life.
Third is Destiny, a woman who could no longer walk or see. She had involuntary eye movements, was in a lot of pain, and always remained in bed.
Destiny was also a single mother. Her child was very supportive and respectful toward her. She also had the support of family members who lived outside of her home. Still, Destiny seemed very much alone.
Fourth is Hope, who was diagnosed with MS in her childbearing years. Hope couldn’t walk, see, or feed herself. She had slurred speech and extreme difficulty swallowing. Hope relied on others for all activities of daily living, including transfers and wheelchair use.
Hope was a wife and mother. Sadly, her young child was very disrespectful toward her. I once observed Hope giving the nine-year-old a particular instruction. The child responded with a firm “no” and continued playing with a toy. My heart broke for her.
Although I can’t share much of their stories, I can say that each one will always have a special place in my heart. Despite battling the symptoms of MS, all four ladies demonstrated so much resilience. I’m grateful to have met them.
Do you have a loved one diagnosed with MS? Do you know a family in need of resources to get them through the ups and downs of MS? Check out the links in the article for help.
