Cognition & MS

Some of the most common but hidden symptoms of MS are the changes people may experience related to cognition. The majority of people with MS experience intermittent cognitive symptoms. However, a person with almost no physical limitations can have significant cognitive impairment, while a person who is quite disabled physically can be unaffected cognitively.

In people with MS, the body's own immune system attacks the tissue surrounding the nerve fibers in the brain, spinal cord, and optic nerves. This covering is made of a fatty substance called myelin. It insulates the nerves and helps them send electrical signals that control movement, speech, and other functions. When myelin is destroyed, scar tissue forms (sclerosis means scarring) and nerve messages are not transmitted properly. Depending on the extent and location of damage in the central nervous system, patients with MS may experience a wide variety of symptoms. MS is different in every person.

My MS mainly affects my mobility without much influence on my cognition – although I do have trouble with verbal fluency (word-finding); when that certain word is on the tip of your tongue. Other people may find it takes longer to solve problems. Some may have mild memory loss or trouble concentrating. Loss of cognitive function can influence one’s ability to work. While I would love to walk again, I am thankful to still think, focus, and work.  I do get a glimpse of these other symptoms when I get overheated or extremely fatigued. Heat and high humidity may temporarily worsen symptoms. My mind and body go “dumb” when I am hot. Weakness increases, my mind seems to shut down, and I have trouble communicating. It is very frustrating. Thankfully, once I cool off, I return to myself.

Some people can’t imagine life in a wheelchair. Well, it sucks, but I can still get around. I can’t imagine a life where I can’t think, speak, or live the life I know. I love to read and watch movies, and even work. If I couldn’t do those things, I’d feel trapped, whereas a wheelchair gets me moving, I don’t see an easy fix for cognitive impairment. Selfishly, since I am stuck with MS, I am happy my MS went the way it did. I am afraid for what the future might bring to me cognitively– just like those who are afraid of life in a wheelchair. MS is a bitch of a disease.

Cognitive impairment substantially impacts the lives of patients with MS and their families. Understanding these issues and showing compassion can help patients with MS deal with these invisible symptoms.

From the NMSS: Mood and Cognition in MS (What You Can Do)

Inspiration Porn

You may or may not have heard the term “Inspiration Porn.” It is defined as any meme, video or feel-good article that sensationalizes people with disabilities. It was coined by the late social justice activist Stella Young in 2012, when she wrote an article titled “We’re Not Here for Your Inspiration.”  She writes: “Let me be clear about the intent of this inspiration porn; It’s there so that non-disabled people can put their worries into perspective…It’s there so that non-disabled people can look at us and think ‘well, it could be worse… I could be that person.’” It objectifies disabled people for the sake of non-disabled people.

A common caption to these images is a Scott Hamilton quote, “The only disability in life is a bad attitude.” The images are meant to motivate; If these people can live with just one leg,” for example, “I can do so much more without a disability.” It comforts us. But it also incorrectly assumes that disability can actually be overcome with a smile and a little bit of determination.

Once, when I was still on forearm crutches, I visited a friend that lived in an apartment situated at the top of a steep flight of stairs. As we were leaving, my husband helped me down the stairs and went to get the car. I waited on the sidewalk and saw a woman rushing down her own set of stairs. She seemed to be coming straight at me. And she was. She said something along the lines of, “I just watched you climb down those stairs and I think I have seen you here before.’ I’m thinking, okay Adam hurry up. Then she said, “I think it’s great that you get out. I just wanted to tell you that.” I thanked her and Adam pulled up and that was the end of it. But that experience stuck with me. I know she had good intentions but I wonder if she knew she actually made me feel a little small. I impressed her because I lived life with a disability. I visited a friend. If you took my crutches out of the situation, would she have approached me? No.

The reality is that disability is a social experience. The disabled population is not just here to inspire you. We aren’t people doing extraordinary things. We are living life.

Watch Stella Young’s Ted Talk here.

My New Normal

Being diagnosed with MS divided my life into two very distinct parts; my life before multiple sclerosis and my life after. I have heard the term “new normal” in regards to many things, including MS. It fits.

I was initially diagnosed with Remitting Relapsing MS in 2011 however, in retrospect; I had experienced symptoms up to ten years prior. At the end of 2013, my neurologist said that I had progressed to the Secondary Progressive MS stage of the disease. This makes sense if you take into account the misdiagnosed years. SPMS occurs when you no longer suffer relapses and remissions, but your symptoms instead progress steadily over time. Instead of hills and valleys, think a gradual downward slope.

I had been using a cane off and on for the past decade but my gradual slope started with transitioning to forearm crutches. I met with a physical therapist and she showed me a few different types. I decided to go with the Walk Easy lightweight forearm crutches. I highly recommend these. They give you so much more stability than a cane but aren’t as heavy as the forearm crutches you are probably familiar with where the cuff goes ¾ around the upper arm. Walk Easy crutches don’t lock in place which gives you more freedom. I used these for over 2 years. In the summer of 2012, for a family vacation, I decided to rent a Luggie Scooter because I was finding it harder to get around without getting exhausted. The Luggie is a fold-up scooter that fits in the trunk of your car. It weighs only 60 lbs. I fell in love with it while using it at Hearst Castle. I could get around and enjoy things again without worrying about the next place to rest. When we got home, we ordered one of my own. I fashioned a crutch bag to strap on to the back of the scooter and I was set. Unfortunately, after a fall in early 2014, I became dependent on the scooter and was unable to walk anymore without fear of falling. While the scooter was great for trips and smaller outings, it was uncomfortable as an all-day option. Since I work from home, I needed something more comfortable that fit me better. I met with an occupational therapist and representative from the wheelchair company and got the ball rolling on a power wheelchair.

I was never hesitant to use mobility aides –they were there to help me get around better, faster, and more efficiently. I was a little embarrassed when people saw me with my forearm crutches for the first time. I looked disabled. Don’t be embarrassed! Mobility aides are a thoughtful, smart, and safe decision. I was steadier on my feet with the crutches. When my friends saw me in my scooter for the first time, they all wanted a chance to ride it. It was fun. Now that I am in a heavy-duty power wheelchair, I have faced the fact that what people first notice about me is that I am disabled. Being in a wheelchair does not diminish the person sitting in it. I’m still me. This is my new normal.

Pain

There is an old myth that Multiple sclerosis doesn’t cause pain. Actually, pain syndromes are quite common in MS. MS-related pain can be associated with faulty nerve signals in the brain and spinal cord. MS pain can also be attributed to daily living.

I experience a variety of MS-related pain every day:

• Lhermitte’s sign is a brief, stabbing, electric-shock-like sensation that runs from the back of the head down the spine, brought on by bending the neck forward. This is a classic symptom of MS
• Burning, aching, and prickling or “pins and needles.”  These are all neurologic in origin. These painful sensations typically affect my legs and feet, but also occasionally my arms and hands. They can be very uncomfortable -- even quite painful -- but are not dangerous or necessarily disabling unless they are severe enough to interfere with a person's activities.
• Pain from spasticity shows itself in muscle spasms or cramps. Tightness and aching in joints is another manifestation of spasticity.
• Back and other musculoskeletal pain. I’ve found that this can be caused by pressure on the body from immobility, incorrect use of mobility aids, or the struggle to compensate for gait and balance problems.

While it may be easiest to lie down and wait for the pain to pass, I’ve found that there are a few things you can do to help with pain. I take three drugs for pain management: Baclofen (a muscle relaxer that treats muscle spasms), Lyrica (treats neuropathic and muscle pain.), and plain ibuprofen. Make sure your doctor knows what medicines you are taking. Regular physical activity can help ease aches in your neck, back, and muscles - it can make you sleep better, too. Stretching for range of motion and flexibility is vital for pain management and basic living. Start slowly and work with a physical therapist to create a routine and/or list of activities you can do on your own and at your own pace. Remember, relaxation needs to be part of your schedule as well.

A good guide from the NMSS: Stretching for People with MS

Emotions and MS

Having MS is emotionally challenging. People with MS can experience anxiety, mood swings, and depression. In addition to symptoms being a response to adjustment to MS, some mood symptoms could be a result of the disease process itself. Though I’m mostly talking about the former here.  

Many people with MS go through a period of grieving after diagnosis - dealing with the loss of certain capabilities and the uncertainty about the future. For me, this happens over and over, with the progression of the disease. I went from a cane to crutches to a scooter to a power wheelchair within three years of diagnosis. I tend to be very hard on myself and hold myself to standards that no one else ever would. I start on that downward spiral of thought, ‘What happens if it gets worse?’

These thoughts can trigger anxiety. Anxiety can happen in response to circumstances in life, such as living with the uncertainty and stress of living with a chronic disease like MS. Before I enter a new situation, I often worry obsessively for days. Since I no longer use my legs, tricky transfers also cause me anxiety. Anxiety presents itself in me with both physiological and psychological symptoms. I shiver, cough and gag and am often restless. I can also be irritable, obsessive, have racing thoughts and catastrophic thinking. In order to manage this, I take anti-anxiety medication if I am going to be in a new situation, and try to distract myself.

Recently, I’ve learned to give myself a lot more breaks than I used to, and that’s done a lot to help me adjust. I have also started Mindfulness training. If you know me, that’s a giant step. I am pretty cynical about that sort of stuff but I have found taking 10 minutes away from life for awhile is refreshing and if I can gain more from it, bonus.

Remember, MS is not all in your head. Your emotions are as valid as your physical symptoms. Include your emotions on the list of topics to discuss with your doctor.

To learn more about Anxiety and MS, click here.

A good resource from the NMSS: Mood & Cognition in MS: [What you can do]

Invisible symptoms

Multiple Sclerosis is sometimes called an “invisible disease” because many symptoms go unnoticed by casual observers, and even by those living with someone with MS.

While I am in a wheelchair, a very visible symptom of my MS, I do experience symptoms not as visually apparent. For example, I often get vision problems and dizziness, as well as memory issues that affect my cognitive function. Somatic issues are also common, including weakness and fatigue, pain, and numbness.

Describing these subtle symptoms to those around you presents its own unique challenge. Just because others cannot see everything I’m going through that doesn’t mean I’m not experiencing life with difficulty.

Fatigue is one of the least understood and most frequent symptoms of MS. Fatigue is a very real symptom, resulting from damage to the nervous system. People often compare my fatigue to whatever they have experienced. But it’s not the same. Describing fatigue as feeling tired does not do it justice. Instead, perhaps comparing it to the feeling of wearing a lead suit might make it easier to understand. Everything is heavy and just moving is almost impossible.

MS fatigue can interfere with one’s daily functioning. It is best described by Spoon Theory – “…the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.”

Another invisible symptom of MS  I experience is pain – for years it was a common misconception that MS doesn’t cause pain. Pain is a very real symptom and can either be acute or chronic. Pain from MS can be a direct result of damage to the nerves or neurogenic. Or MS pain can be associated with living with disability and its effects – from using a cane or walking aide and the pressure you put on your arms to the pain caused by favoring one leg over the other, just living with MS can cause pain.

While I may look fine, remember that some of the symptoms which have the most impact on my life cannot be seen. Remember the invisible symptoms.

Support: Family

While MS has altered some of the things I’m able to do, and my relationships with others, I am lucky to have a strong, meaningful relationship with my family. But I have learned that there is the potential for MS to have a negative influence on family relationships. While my family has been supportive, I have learned from others that if family members aren’t willing to learn about MS and how it affects the person, or to listen to and respect each other, this can be a great source of tension.

MS is unpredictable. Individuals with MS and their family members may have difficulty anticipating what the next day or week will bring, let alone the distant future. Planning becomes difficult, creating an ongoing need for everyone to stay flexible. For example, instead of making plans to go to the movies, maybe have the family over and rent one.

My family lives in Wisconsin while I live in California. I have lived on the West coast for 15 years so we have gotten used to seeing each other only a few times a year. Since I was diagnosed, those visits have fallen dramatically. MS has disrupted my family's rhythm.  I am not comfortable flying since I no longer walk and airports, let alone airplanes, don’t really cater to the disabled. Unfortunately, that means family has to come to me, which they do. We have adapted and still have fun and good laughs. But adaptation is key. MS changes things for everyone.

Sometimes it has to be all about me.  I may not feel up to certain things. Truly, it’s not you, it’s me. If you ask how I’m doing and I say ‘fine’ or ‘okay’ think about this. My MS means I’m experiencing life with difficulty. A difficulty most can’t understand. I hope everyone gets the respect and care from family that I do. If not, know that strong connections with others are an important ingredient in a fulfilling life.