When a Loved One Has MS
When I was finally diagnosed with multiple sclerosis in 2010, my first reaction was, strangely enough, relief. After years of specialists and medical tests for symptoms with no apparent cause or cure, I finally knew what was going on. My relief was soon replaced by other feelings, however, including frustration, fear, anger and depression.
It took a while for me to realize that I was not the only one having these feelings. My family also had to deal with my MS. Multiple sclerosis is a very unusual disease, with symptoms that are often invisible, and very difficult to describe. It was hard for my family to understand what was happening to me, or what they could do to help.
This hub is based on my own experiences over the last two years, as well as those of my wife (a Registered Nurse, thank goodness). My hope is that the information may help someone else whose loved one has been diagnosed with MS better understand and cope with the challenges that lie ahead.
Everyone's MS is Different
The first thing you need to do is learn about MS. There are plenty of resources available, with the National MS Society being one of the best places to look. But here's the important thing: nothing you read will tell you about your loved one's MS. Everyone who gets MS experiences a unique array of symptoms. Learning all you can about multiple sclerosis will tell you what's possible, but that's just a start. You also need learn how to communicate with your loved one to better experience what their reality is.
MS is Hard to Describe
Unfortunately, such communication is much easier said than done. The symptoms themselves can be extremely hard to describe, and it's easy to dismiss the descriptions as hyperbole.
People often say things like "my legs weigh a ton" when their legs are tired, for example. You need to understand that when a person with MS says something like this, they mean it literally. If they say that their legs are hard to move because they're heavy and feel like dough, they don't mean that their legs are really, really tired. They literally mean that their legs are so heavy that it takes a great effort to move them even a little, and when they do, it feels like there are no bones or muscles in there, just lumps of dough.
Until you understand that a person with MS means exactly what he says when describing his symptoms, you may both be frustrated. You'll wish he would stop using such dramatic descriptions, and just tell you how he actually feels, and he'll get frustrated because he is telling you how he actually feels.
Fatigue can be one of the most debilitating symptoms of MS. The cause is unknown, but there is a severe, profound type of fatigue that can affect MS sufferers. This fatigue, which isn't related to the amount of physical activity one has performed, nor to a lack of rest, is more like a drug-induced stupor than physical fatigue. It can make performing even the simplest of daily activities difficult.
It's very important to realize that when a person with MS complains of fatigue, it may not be something they can just work through, even with the help of coffee or energy drink. They aren't being lazy or inconsiderate when they say they simply have to stop and rest.
Cognitive Fatigue and Brain Fog
Fatigue can be mental as well as physical. Cognitive functioning in people with MS will often deteriorate over the course of the day, and a general decrease in the ability to sustain mental activities over long periods of time is also common. Some ways of dealing with this are reducing or eliminating distractions, taking regular breaks, and focusing on single tasks rather than multi-tasking.
An even more intense type of mental fatigue is something called "brain fog", which goes way beyond the slowing of cognitive functions described above. With brain fog, the brain and nervous system have reached a point of overload, making even the simplest of questions or problems too much to deal with. In such a situation, an MS sufferer may be unable to answer such simple questions as "what is your phone number?" or even "what do you want for lunch?".
They aren't being difficult or indecisive. Impossible as it may sound, they honestly do not have the capacity, at that moment, to answer the question. In one instance, while grocery shopping with my wife, she sent me to get some cereal, only to later find me in the cereal aisle still trying to decide which one to select. I knew who I was, and I was completely aware of my surroundings (it's not like senility or dementia), I was simply unable to choose a cereal. If I hadn't experienced it first hand, I wouldn't believe it myself.
It sounds ridiculous, and we've learned to laugh about it, but it's a real problem that we have to deal with on occasion. In these situations, telling me to hurry up and make a decision is the same as telling me to flap my arms and fly - it's just not going to happen.
My wife has learned to recognize these moments and step in to make a decision for me. It's tricky, though, because if I'm not actually experiencing brain fog, but simply pondering my options before making a decision, I might get upset at her for not letting me decide. She's learned to ask, "are you just thinking it over, or do you need me to choose?".
MS and Heat
Heat is the enemy of nearly everyone that has MS. It can exacerbate their symptoms, and it doesn't take much to do it. A small amount of activity, a slight increase in temperature, a hot shower or even just drinking a hot beverage can cause overheating, even in an environment where everyone else is quite comfortable. Fatigue (physical and mental), weakness and visual problems are common reactions, although other symptoms may also be intensified.
Heat is such a serious issue for people with MS that before the days of MRIs, evoked potentials and other modern tests, a potential diagnosis of MS was tested by putting the patient in a tub of hot water to see what happened. If neurological symptoms increased, or new ones appeared, it was a strong indicator that MS was present.
It's important to understand that this isn't a true "flare up", and it doesn't mean that the disease has gotten worse. It's a temporary intensification of symptoms that will go away once the person has a chance to cool down. The point is that you need to try to anticipate situations where heat may be a factor and plan accordingly. Limit expectations on warm days, allow for periods of rest, try to have cold drinks readily available, look for shade, and try to incorporate locations where air conditioning is available into your plans.
MS and Cold
For some people with MS, cold can be a problem. It can cause spasticity (a painful tightening of the muscles) as well as other symptoms, such as tingling or pain in the extremities. Some people have problems with both heat and cold, and may have a narrow range of temperatures within which they can operate relatively comfortably.
A person with MS may experience painful spasticity at 65 degrees Fahrenheit, and weakness and blurred vision at 75 degrees. They may continually be adjusting the heat and/or air conditioning throughout the day, in response to small changes. A cup of hot coffee may cause them to turn up the air conditioning, for example. It's important for them to be able to cool down or warm up as necessary, so their loved ones need to find methods, such as dressing in layers, for adjusting to these temperature swings.
- Planning: someone with MS doesn't know how they'll be feeling an hour from now, much less in a week or month. Long-range planning clearly has to remain flexible, but even short-term plans, such as what you'll be doing after lunch, are always subject to change.
- Keep it simple: attention span, distractibility and memory problems are common with MS. Try to keep requests, directions and answers to questions as clear, short and simple as possible.
- Notice changes: you may notice changes in symptoms, or the appearance of new ones, before your loved one does. Make note of these for the next visit with the Neurologist.
If your loved one has been diagnosed with MS, you both have a lot of challenges ahead. Everyone's situation is different, so not all of the information I've shared here may be relevant to you, but hopefully you've discovered something useful.
Please use the comments section below if you have a question or comment that you'd like to share with me or with other readers.