MS, Limits, and Loneliness

MS is a tough disease. Not only do you have to deal with medical issues, you have to deal with social ones. Loneliness seems to be one of the most difficult things to deal with concerning MS.

Impacts on my social life come in a variety of forms. I find that MS restricts my ability to interact socially as immobility and fatigue limit my time away from home. I am unable to go to inaccessible homes or restaurants. Unknown situations can cause anxiety therefore keeping me home, in my comfort zone.

Fatigue, the kind brought on by MS, is a disabling condition. Having MS makes movement an activity of its own that requires concentration and effort. People with MS need to be aware of each and every activity required by an outing or event.

Often noted in the MS community is the social stigma surrounding MS due to ignorance, where people do not understand or appreciate the invisible and painful effects of the condition. For me, the effects are more obvious as people can see my wheelchair. For others, visual cues are less obvious, and observers can mistake symptoms for intoxication.

MS affects everyone in different ways, and when fatigue or an attack is happening, life shuts down. While your body is trying to fight its way back to normal, it is difficult to experience loneliness, and all the emotions it comes with.

As you can tell, I get very frustrated with this disease. Not only do I have to take care of myself, I have to be more proactive in creating social activities I can take part in or risk distancing myself from the friends and family I love. I often worry about being too boring. At times like these, I find it is very important to be kind to myself. 

Ready? 1, 2, 3!

Sometimes I think the theme to my life with MS is “Ready? 1, 2, 3!” This is what I say to myself to get me ready to transfer on my own. I also say this to my husband or other people helping me out so we are on the same page and ready to move. Go on 3.

One of the hardest things about MS is dealing with the loss of independence. Unfortunately, I know what dependence feels like. I relate to the discomfort of relying on others. I find myself feeling guilty every time I have to ask for help.

But maintaining control and independence in everyday life doesn’t necessarily mean doing everything the same way you did it before. By allowing yourself to do things differently and using assistive devices – there are an array of energy- and labor-saving tools and devices that allow you to stay active and productive - can save you energy  Physical and Occupational Therapists can help you modify your environment to optimize control and independence. I have grab bars next to heightened toilets, a bed rail, have reacher/gabbers placed around the house, use a shower transfer bench, and use a riser recliner.

I have to remind myself that it’s not my fault. MS progresses because that is the natural course of the disease. Do not mistake needing help for weakness, or independence for strength. 

Accessible?

Sometimes my MS seems to be a continuous series of things I can't do anymore and places I can’t go anymore.

The Americans with Disabilities Act (ADA) was signed into law on July 26, 1990, by President George H.W. Bush. The ADA prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in American life.

It’s been over 25 years since the ADA was signed into law and unfortunately progress has stalled. I’ve seen things that confirm this for me. When a place, particularly a business, claims to be wheelchair accessible, a lot of times it really isn’t – it is only accessible to the minimal required standards. They think that just because there isn’t a step to enter the establishment it is accessible. False!  The doorway may be too narrow to accommodate my power wheelchair, the door may be too heavy or awkward for me to open on my own or there isn’t an automatic door. Public restrooms often don’t get it right either.  Many times there isn’t a support bar next to the toilet that is an ADA regulated height.

The thing is: ADA is not an accessibility guideline, it is a law. Using your accessible bathroom for extra storage doesn’t cut it. At an accessibility conference in Melbourne, Australia in March of last year, the main speaker (who was in a wheelchair) had to be carried on stage because there weren’t any ramps. At an accessibility conference, the stage was not accessible. You can read more about this story here.

Over the Christmas holiday, my husband and I planned to take a short trip to Monterey, California. We reserved an ADA accessible room at a fancy hotel and confirmed they had the accessible features most important to me: a support bar next to a heightened toilet. After we checked in, we went to our room. There was a support bar next to the toilet but the bathroom was very tight; the huge marble sink was perpendicular to the toilet making it impossible for me to line up my power wheelchair for a transfer. Before heading to the main desk, we checked out the restrooms in the lobby on the Bay side of the hotel. These were not configured well for my use. We then went to the main desk and spoke with the manager. The only thing he could do was transfer us to a new room on the inland side that was not accessible but had and accessible bathrooms in the lobby. So every time I needed to use the restroom I had to go to the lobby. This would have to do. We ended up cutting our vacation short because of this inconvenience. Sadly, I was not that surprised, merely disappointed.

People need to do more to understand what accessibility means for all. And to live up to the law that guarantees that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life.

PT OT: Important letters in MS

My definition of successfully coping with MS is to live a life as close to normal as possible.  Physical and Occupational Therapists help make this possible.

I am a strong proponent of PTs and OTs. After I broke my ankle, I saw a PT to get me walking again. As my ankle healed and I started walking again, we both noticed something was off with my gait. My PT thought it might be neurological and suggested an MRI. I’ll always be thankful to him – he got me on the road to diagnosis.

In early 2013, I had an infection that led to an MS exacerbation that landed me in the hospital. After four days, I was transferred to in-patient rehab for four more days. Those days were spent with PTs and OTs going over various issues: strength, balance, endurance, and cognitive changes. My therapists helped me create a program for my ability and goals. I learned how to conserve energy and work around my limitations,  get the most from exercise, and perform daily activities.

After I came home, I was advised to sign up for in-home health – where the therapists come to me. This proved to be highly beneficial. I didn’t need to travel and the therapists could see my home environment and help me to adjust to being back home.

As my MS progresses, I often request in-home health appointments so my PT can reassess where I am and help me with adjustments and adaptations. PTs and OTs help you find ways to maintain your independence while also caring for yourself without risking greater damage to your body.

When MS gets in the Way

There’s a common saying, “I have MS, MS does not have me.” It’s supposed to be an empowering message. Unfortunately, MS does have me a lot of the time. My disability is fairly advanced - meaning I don’t walk anymore. So it’s hard to say that MS doesn’t have me when almost every aspect of my life is affected by my lack of mobility. MS does certainly get in my way.

I’m a planner – I like to have things planned out – so the unpredictability of MS and unanswered questions that arise day-to-day (or even hour-by hour) is doubly frustrating. On the other hand, there is no spontaneity in a life with MS. I have to plan every trip outside. Is where I’m going accessible? Will there be an accessible bathroom nearby? What is the weather going to be like? Or, most importantly, how am I going to feel?

So what do I do when MS gets in my way? The only answer is to figure things out. You can’t give in to MS but rather you need to maneuver around obstacles as they arise, seek solutions, and be open to new ways of thinking.

I am lucky enough to still be able to work. However, what/where/how I can work has changed. Since I am in a wheelchair, and getting to the office (not to mention getting ready for a day in the office) is more complicated and tiring, I work from home. There is an up and down side to this. I am a social person so I miss the daily interaction with people. But since my MS can be so exhausting, eliminating travel to the office is a huge help to my quality of life each day. Working from home, or telecommuting as I do, enables me to engage my mind, bring in a paycheck, and feel useful. However, as my MS progresses, adjustments have to be made.

One of the most challenging things about adjusting to MS is it’s a process. You have to be a chameleon and learn to change with every turn.  Be kind to yourself.  It’s a struggle every time, but with MS, you might have to make changes to your life to accommodate the disease. Prepare for the worst; Hope for the best. Realize that in struggle there is strength.

MS & Sleep

 People with MS often have trouble sleeping, but the problems may not be due to the disease itself. Stress, spasticity in the arms or legs, or depression that can come along with MS can interfere with a good night’s rest. MS is also associated with a number of sleep disorders; The most common are insomnia, nocturnal leg spasms, narcolepy, and Restless Legs Syndrome (RLS). Studies have also shown that pain, medications, and frequent trips to the bathroom also influenced sleep among MS patients.

MS affects how I sleep in a number of ways. I have extensor spasticity where my legs like to remain straight. Once I get into bed, I experience a number of spasms that straighten my legs, stiff as a board. Adam helps me with stretches that bend my legs. He then helps me onto my side and bends my legs into a relaxed fetal position so I can fall asleep (I have always been a side sleeper and it is more comfortable for my legs to remain bent). I take a couple medications to help me sleep. The first drug I take is called clemastine - my neurologist prescribed it because it has shown, in studies, to help with remyelination - the regeneration of a nerve’s myelin sheath. It is nothing more than an antihistamine however the study uses a larger dose than over-the-counter medications. I take half of what was prescribed in the study because, as you know.  antihistamines can really make you drowsy. I also take a drug to relax my muscles to help me sleep. This combination of drugs helps me to sleep about 3 to 5 hours. Once the drugs wear off, I usually wake up from pain and/or spasticity. I often find that my legs have straightened - my hips and knees remain straight with the legs crossed over at the ankles, I have trouble bending my legs on my own once they have straightened so either I just drift in and out of sleep and deal with the discomfort or I wake Adam and ask him to bend my legs for me. The pain I experience that can also wake me is usually pressure pain in my hip from lying on my side or nerve pain.

Fortunately, I usually get enough sleep for me to be able to function the next day. I know this is not true for all MS patients. Some things that can help you get a better night’s sleep are:

• Get outdoors for some natural sunlight during the daytime. 
• Limit long naps during the day.
• Exercise. Not to the point of exhaustion, but studies have shown that doing some  exercise every day helps you to sleep at night.
• Create a restful atmosphere in the bedroom, free from distractions, noise, extreme  temperatures and light.
• Stretching, yoga, meditation, or a warm bath before bed may help with sleep.

If your sleep problems affect your daily activities, talk to your doctor to have your sleep problems evaluated and explore safe and effective solutions. 

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)