A Care Partner’s Perspective to MS
Ten data points from the 2022 Multiple Sclerosis in America Survey (completed by 4,478 people living with MS) were shared recently. While I am sure that MS patients will discuss the findings, I wanted to share my reaction as a care partner with my wife, Cathy, who has been living with MS for more than three decades.
Fatigue affects the entire family
It was no surprise that 87 percent of respondents said they experience fatigue. As difficult as it is to see a beloved patient need to curb her activities, take naps, and sometimes feel just plain lousy, it can also be a drain on spouses and children.
Dealing with disappointment and taking on extra chores such as grocery shopping and cooking requires perspective. When you look at the state of the world, some of us have relatively easy lives in which we don’t have to worry about food shortages, clean water, and other essentials. Losing some time in front of a screen to cook dinner is not a hardship.
And the dinner with friends that you could not attend ─ there will be others.
Why do some patients reject MS therapies?
More surprising, at least to me, was that only 67 percent of respondents said they currently use disease-modifying therapies (DMTs). Others may have mild MS and prefer to take a wait-and-see approach, which is understandable.
But surely there are others who fear the side effects or long-term risks of DMTs. I wonder if this is human nature or if it correlates to the finding that only 64 percent of patients said they have adequate information to make treatment decisions.
When Cathy was diagnosed, there were no approved DMTs for MS. She took cortisone to suppress her immune system, but there were nasty side effects and it was only a short-term fix. We were grateful when the first MS-arresting medication was available, and these therapies have made a huge difference in our quality of life. I can’t imagine where she might be without effective medication.
Do you need an MS specialist?
Cathy was diagnosed by a knowledgeable neurologist, but it seemed a no-brainer to seek treatment at a comprehensive MS center. Among respondents to the In America survey, 73 percent said they currently see a neurologist specializing in MS. This is not a choice for everyone due to distance, but there are more than 250 centers affiliated with the Consortium of Multiple Sclerosis Centers in the U.S. and Canada, and the organization keeps MS practitioners up to date.
Last year we moved from New Jersey to North Carolina, and Cathy saw a specialist at an MS center. Her last MRI showed some increased activity, and she was having some balance issues. Her previous neurologist suggested changing to a different DMT, but her new doctor preferred physical therapy and waiting for superior medications that should be available in the next 1-2 years.
This was a difficult choice, but we knew that both neurologists were knowledgeable specialists in their field. Cathy chose the second approach, and her physical therapy is going well.
To Vitamin D or not to Vitamin D?
About three-quarters of respondents reported taking Vitamin D supplements. Some research has explored whether Vitamin D could help manage MS, but more is still needed to determine that.1
Cathy and I each keep current on developments in nutrition, exercise, healthcare, and MS. We discuss all care decisions. Taking Vitamin D is an easy call, as we feel it is both safe and affordable.
If only all patient choices were that simple.
A friend in need is a friend indeed
Only one-third of those surveyed said they feel comfortable discussing their MS with family and friends. This is a sobering fact, but each patient should realize that it reflects the human weakness of others and in no way reflects on you as an individual.
There is no way to adequately console one whose parents, siblings, or friends lack empathy or the ability to listen to you. Cathy and I are fortunate that she has a few childhood friends who are always there for her. For your own sake, you might want to focus on that one individual with whom you are able to converse, even if that person is only an acquaintance.
The friends we meet online can be comforting as well. It is not the same as a familiar face, but the MS community is filled with people who are open to listening to the story of all patients. It is our continued goal to nourish an online community where everyone is willing to listen and eager to help.
The 10th Multiple Sclerosis In America Survey was conducted online from March through June 2022. The survey was completed by 4,478 people.
Were you misdiagnosed with something else before receiving a MS diagnosis?