When it comes to MS symptoms, there is a real variety in what individuals experience. This is one of the reasons why making an MS diagnosis is so challenging. Its symptoms can look different from person to person. No two people have the same MS disease course. This can make it hard to understand exactly how the condition impacts someone. Its uniqueness acts as a detriment at times when trying to explain or educate others about MS. It is assumed that symptoms will look the same and that outcomes will match, but this is not always the case.
It has been said across the internet that “we only use 10% of our brain.” If you’ve ever walked into a room only to forget why you were there, you might agree. Generally speaking, most scientists now seem to agree that we use every part of our brain, but we may only use 10% of total brain function at one time. Brain function, cognition, and the way we process information is still one of the biggest mysteries of the human body that scientists are actively trying to unravel and understand.
One of those mysteries that scientists and researchers are trying to better understand, is how brain function and cognition are affected by chronic diseases like multiple sclerosis. Approximately half of all individuals with MS experience some kind of cognitive issues as a result of their disease. Most often, these cognitive issues affect:
- Attention span
- Speed-of-information processing
It can be difficult to measure the impact of cognitive issues, as there is no way to establish a baseline for everyone. Researchers are still looking into the best ways to evaluate cognitive deficits for individuals with MS, since MS can affect each person in different ways. Depending on where lesions are in a person’s brain, can affect the type and severity of the cognitive issues they are experiencing.
While there are not currently any medications or disease-modifying therapies that target cognitive function, there are strategies available for people experiencing cognitive issues. From brain games, to Cognitive Behavioral Therapy, to extensive note-taking, each strategy is designed for specific brain functions affected by MS.
To learn more about these options and for more information about cognitive issues, take a look at our cover story from the Winter/Spring 2015 edition of The Motivator, Cognitive Issues with MS: Research, Strategies, and Support.
This month we’ve been talking about MS symptoms that aren’t spoken about or mentioned as often as other symptoms within the MS community. Some of the symptoms highlighted so far have been issues with incontinence and bowel and bladder challenges. On the My MSAA Community peer-to-peer forum, we recently asked a poll question about which commonly overlooked MS symptoms individuals would like to learn more about, and one of the results has been cognition. Though many individuals are experiencing this issue, it’s still not one discussed very often, and it’s hard not to wonder why.
With the multitude of research that has been – and continues to be – done on MS, issues with cognition are still questioned and sometimes aren’t even associated with the disease itself. Individuals often ask if MS can affect their cognition and thinking when they notice certain changes, and the answer is unfortunately yes – this, too, is another area that MS can influence. If parts of the brain that control judgement, memory, thinking, and reason are affected by MS disease activity and inflammation, then symptoms can manifest and cognitive changes can occur. Sometimes individuals do not know that cognitive changes can be a symptom of MS and they ask if there is something else going on, or is it due to getting older/the aging process itself, or stress, etc. Bringing this and other types of symptoms that aren’t discussed as frequently to the forefront will help increase awareness of them being related to MS, and in turn, start conversations on how to address them.
There are several types of feelings that can be provoked by cognition changes due to MS, and embarrassment is a feeling that oftentimes accompanies this symptom. Individuals can feel self-conscious and uncomfortable if they’re experiencing issues with their memory and thinking—especially when interacting with others or trying to fulfill work or relationship roles. Shame and guilt can be other feelings associated with cognitive difficulties too. People feel they should still be able to do certain things and not have to ask for help or admit they can’t do what they once did. It’s very common for these types of feelings to emerge when it comes to such an impactful symptom that can effect day to day situations so easily. But knowing that you don’t have to feel ashamed or guilty if it does occur is key – and so is knowing that you can talk about it with others who are supportive and can identify with you, as you are not alone in this symptom issue.
MS sets out to be a thief not only of physical body functions, but also of mind operation as well, and it’s to no fault of those affected. It’s important to recognize if you are experiencing cognitive changes or challenges, and to bring it to a healthcare professional’s attention so you can work together to try and address it. MS may have its own agenda, but you can show your power with proactive steps in symptom management and self-care and awareness.
Over the course of years living with a disease such as MS, there may come a time when more assistance is needed to complete daily activities. Perhaps typing on the computer is becoming a challenge due to spasticity, or driving a vehicle has become difficult because of numbness in the leg. While it may not always be conducive to ask another person for help, perhaps a piece of equipment can aid in getting the task done more effectively. Assistive technology, or AT, is any item, piece of equipment, or software that is used to increase or improve the functional abilities of individuals with disabilities at school, work, home, and in the community.
Assistive technology devices can assist those who may have difficulty with speech, typing, writing, cognition, walking, etc. In each state, a State Assistive Technology Project is available to provide information on assistive technology and consultation about the type of technology piece that may be helpful. A borrowing program may also be available where the devices can be borrowed for up to a certain period of time to see if the device will be effective. Information about available loans to help with more expensive devices can be discussed as well.
In trying to determine the type of device that may be helpful for a specific need, working with a rehabilitation professional such as a physical or occupational therapist might help to clarify the type of device that would provide the best assistance. They can make specific recommendations of devices that can assist with a variety of needs and may also help with checking whether insurance will cover the item recommended.
What assistive devices have you used? What avenue did you take to receive the device?
Stress is something that everyone confronts in their lives. Stress broadly falls into two categories – external stressors where another person or entity is pushing you harder and asking for more, more, more (more of your time, more of energy both physical and mental, and more than you can handle). I think everyone is familiar with the external stressors- a school deadline, a boss that keeps piling more on your plate, appointments and activities you need to get to…these can all add external stress.
The other lesser acknowledged form of stress stems from internal pressures. Internal stress arises when you place restrictions, parameters, and deadlines on yourself, where you strive harder and work longer and try to be “perfect” or to be everything you think you can and should be for everyone and more.
I’ll give you an example. The schedule says you work from 8-5 and get an hour for lunch, that is the schedule you are paid for BUT the phone is ringing, and a new project is assigned, and the work is piling up (external stressors) so your internal response is to come in a little early and only take 20 minutes for your lunch breaks and maybe on some days you stay a little later too. Before you know it you are working 5-10 additional hours each week. Sure you are getting the work done but you aren’t being compensated extra, and everyone else is taking their lunch breaks.
Sometimes people use internal stressors because they are motivated by something specific (i.e. if my boss sees me accomplishing so much maybe I can earn the promotion, and some day make it to the corner office) or maybe you love your job and are motivated by what you think you can accomplish (i.e. I’m saving the world one day and one life at a time, GO ME!) but whatever the reason at some point those additional self-imposed stressors will catch up to you. And frankly at the end of the day while your boss might acknowledge all of your hard work it is just as likely that they will raise their expectations of you, so that without a big promotion you are stuck doing all the extra work and if you try to cut back on the “extras” your boss may wonder why you can’t accomplish what you used to!
These internal stressors don’t just apply to the workplace, they may cause anxiety over what you need to do-“I’ve got to clean the house before Janice comes over to visit, but when will I have the time and energy.” If Janice is truly a friend she will understand that life got in the way and that your house can’t always be impeccable. Don’t worry, Janice already knows that you are human.
You may be asking why is it important to acknowledge when a stressor is internal or self-imposed and try to reduce those actions or thought patterns. Stress is well known to impact health. Stress has been attributed to developing or exacerbating changes in mood such as increasing worry/anxiety, but stress has also been linked to physical health including affects to sleep, cognition, and increasing levels of burnout/fatigue. On the more severe end of the spectrum, stress has been linked to heart attacks, ulcers, and has also been correlated with MS Relapses among other health issues. So, while you may not be able to stop your boss from dumping 500 projects on your desk or keep your house in a perpetually spotless state, you can put in place an internal protection system: Remind yourself that there will always be work for tomorrow no matter how much work you do today, and that friends, family, and neighbors don’t expect you to be “perfect.” Finally, let yourself know that it is okay to ask for help when you need it. Don’t be your own worst enemy, prioritize your health and try your best to stop or reduce that internal voice saying and, AND, AND.