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)

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.

Support: Groups and Online

Being diagnosed with MS was overwhelming. I was lucky enough to be surrounded by a special group of family and friends who care about me. And while I hate feeling like a burden, relying on my family and friends makes things a lot easier. 

I think my loved ones feel useful if they’re included in my care - even if it’s a small thing like moving a table or grabbing me a drink. Asking for help doesn’t make you less capable. It makes your diagnosis easier to handle so that you can focus on taking care of yourself. 

Unfortunately, only people who have MS really know what it’s like. I was lucky enough to find a support group, MS Fight Club - physically located in the East Bay of the San Francisco Bay Area and accessible anywhere online. Finding this support group, which I joined about six months after I was first diagnosed, was vital to my mental health and understanding of my disease. This diverse support group showed me the reality of MS with humor, perspective, and experience. MS Fight Club has an active online presence via Facebook and Twitter. Support is just a click away. 

If you feel you don’t have anyone to rely on, I urge you to connect with others with MS. They can relate to you like no one else can. Contact your local chapter of the National MS Society or other MS organizations. Search social media sites like Facebook. I found these sites helpful:

Wheelchair Kamikaze – Marc’s blog is amazing. He combines his own experiences with a multitude of information about MS research and news.

Life with Multiple Sclerosis – Travis Gleason gets down to the nitty-gritty of MS all the while maintaining a positive attitude.

You can find more at The Best Multiple Sclerosis Blogs of 2015. 

There are resources out there to help you build a new style of family and support system.

Support: Adam

My husband Adam is pretty great. Ask anyone. Ask him. Ha! We started dating in 1998. At that time, I knew something was not quite right with me physically. I actually told Adam on our first date that I had arthritis (which is what I had been told) because we were walking a lot and I had decided to wear cute shoes instead of practical ones and I needed a rest. He was automatically sympathetic and showed concern the rest of the night. As our relationship grew, he showed even more support. Everyone saw how much he was there for me and I saw and felt it too.

By the time I was diagnosed with MS in 2011 we had been together for 13 years and married for two years. I never once doubted that he would stand by me. I am very lucky to have him and he says he is lucky to have me. We work together to navigate the unpredictable and changing nature of this disease and life together. We know that we must communicate honestly and effectively. We respect one another.

In many ways, Adam has been forced into the caregiver role. I am dependent on him for a lot of things. While this can cause resentment on both sides, it is something we have grown to accept. You have to grow with this disease not against it. That goes for both of us.

That isn’t to say that we don’t have our fair share of disagreements, tears, and even full-blown fights. We are just like normal couples. We also make each other laugh. If you can’t laugh together, you can’t love. I think we work as a couple because we are, at the core, the same couple we were when we started. 

Guilt

When I was first diagnosed with MS I was relieved. I finally had an answer for what I had been dealing with for 10+ years. But when a chronic illness like MS comes into your life and the lives of those around you, it brings with it many emotions.

I remember doing a lot of things when I was first diagnosed. I had a lot of tests to schedule; I had a lot of prescriptions to fill; I had to learn how to give myself an injection. It was a flurry of things to do. Things to do. When I finally had a chance to sit down and let it sink in that I had MS, I was struck with many emotions such as fear, resentment, self-pity, and guilt.

I had always been prone to guilt. Quick to apologize and make things right. Let’s all be friends. But now there is a new guilt to deal with, MS guilt. Feeling guilty because you have MS is ridiculous. But I did and I do.

A lot of my guilt stems from the unpredictable nature of MS. It is so hard to keep a normal schedule when MS symptoms come and go as they please. I also question myself, “Did I do something to cause this disease? Or “Could I have prevented this progression?”

I feel guilty for what I can no longer do, for what I can no longer be. I think about how I was before. My former life. I'm sorry. Remember when I could take the stairs? Remember when I could walk? Remember a year ago? Remember five years ago?  

There. I felt guilty. And I will feel guilty again. I need to feel these things but then I also need to let them go. Sing a few verses of Let it Be and feel the lyrics. I didn’t do this to me. Let it be.

Limitations

One of the greatest challenges of MS is the unpredictability and uncertainty of what is to come. The effects of multiple sclerosis vary based on which part of the brain or spine is damaged, or more specifically where damage to the nerve-protecting myelin has occurred. As a result, symptoms can be radically different from patient to patient. There isn't any typical MS; everyone's MS is unique to them. It's a very difficult disease to understand. But as you live with it, you need to understand your MS.

Since my MS mainly affects my mobility, I have to be aware of accessibility. I have to be more prepared than before. This takes the spontaneity out of going out. I need to know whether the places that I go are handicapped accessible or not. There’s nothing worse than getting somewhere and finding that you can’t enter because of a stair or stoop. I also need to know whether the restrooms are handicapped accessible or not. This small detail to some is of utmost importance to me.

I am lucky to live in a condo that has a ramp and elevator with a courtyard in a neighborhood that is vibrant and active. I also live near BART (Bay Area Rapid Transit) that can get me around town pretty easily (as long as the elevators are working!) I am also fortunate to have friends that understand my limitations and make a point of coming to me and not letting me feel too isolated. As does my husband and family.

Overall though, I think that there's a limited understanding of what it's like to exist in a less-abled, wheelchair-bound, body. This needs to change. Thankfully, Jason DaSilva of AXS (read: access) Map is bringing us a kind of Yelp for people with disabilities. Creating this viewpoint for those without disabilities is crucial to making a change in society. The disability rights movement needs to gain momentum.

I am thankful that my MS has left my mind unimpaired and I can get around in a wheelchair. But it needs to be easier. There is a fight to be had.

What Next?

In some ways a diagnosis of MS was a relief. I finally had an answer to the myriad of symptoms, aches, pains, and “what the hell’s” I was experiencing. But now I had an incurable disease. What do I do next? I was given prescriptions for drugs that would treat symptoms I was experiencing such as spasticity in my legs, bladder issues, and nerve pain. 

The overall issue, however, was what could we do to stop the progression of MS? There are quite a few DMD’s (disease modifying drugs or DMT’s disease modifying therapies) on the market for Remitting Relapsing MS. These seek to reduce the frequency and severity of flares or exacerbations. They range from subcutaneous (under the skin) injections or intramuscular (into the muscle) injections to oral medications to infusions. You can find a full list here. It is up to you and your doctor to decide where you’d like to start. I strongly recommend doing a DMD because progression can be slowed.

I have tried almost every version of a DMD and unfortunately none of them worked for me as I progressed from RR MS to SPMS. There really aren’t any treatments for progressive MS, although research and clinical studies are making advancements. My neurologist and I discussed them and she prescribed 2 for me. Fingers crossed!

My MS progression began with breaking my ankle in 2010. The trauma, along with the sedentary months ahead, brought upon my most serious exacerbation to date. Once my ankle was healed and I was diagnosed, my mobility went downhill. I started using a cane regularly then moved on to forearm crutches and a scooter. I am now in a power wheelchair. I don’t walk anymore. My legs are heavy and my feet are like bricks. I exercise them but need to remind myself that MS is a neurological disease not a muscular one. I sometimes feel that I could have prevented all this. Could I have? My head says no. My heart… well I try not to dwell in the past ('try' being the operative word). Life is ahead of me today.

Diagnosis

I was diagnosed with MS in September 2011 at the age of 33 which is common. Most people are diagnosed in their 20s – 40s. I was initially diagnosed with Remitting Relapsing Multiple Sclerosis (RRMS) which is characterized by clearly defined attacks - also called relapses, flare-ups or exacerbations - of worsening neurologic function. These are followed by partial or complete recovery periods (remissions). In retrospect, and hindsight being 20/20, I was experiencing symptoms up to 10 years prior. After my first ‘flare’ in 2001 when my legs couldn’t bear my weight, I experienced episodes of weakness, numbness, and unexplained pain. MS is difficult to diagnose:  There are over 50 symptoms linked to MS, and each person develops symptoms differently. Many of these symptoms mimic problems that occur with other diseases. I was misdiagnosed with Psoriatic Arthritis and was treated by rheumatologists for years – specialists often have tunnel vision and don’t look outside their field. Who knows what an earlier diagnosis may have led to – everything or nothing.

In 2013, my doctor casually said, “Since you are Secondary Progressive…” I must have had an expression of shock on my face because she said, “Now don’t go home and mope about it!” My neurologist is smart and my advocate – she just isn’t the most tactful.  But I don’t need tact. I need intelligence and someone willing to go to bat for me, which she does. So in 2 short years, my diagnosis advanced to Secondary Progressive Multiple Sclerosis (SPMS)  - which means that the disease will begin to progress more steadily (although not necessarily more quickly), with or without relapses. Most people who are initially diagnosed with RRMS will eventually transition to SPMS.

There are four main types of MS. RRMS, SPMS, PPMS, and PRMS which you can read more about here.

My MS is unique to me. As Margaret Mead said, “Always remember that you are absolutely unique. Just like everyone else.”

World MS Day

Today is World MS Day: “a day that brings the global MS community together to share stories, raise awareness and campaign with and for everyone affected by multiple sclerosis.” I started this blog as a release, to help me cope with my MS.

I think the most important thing for me is to stay connected – be it with family, friends, a support group, or on social media. It’s easy to feel sorry for yourself. I threw myself some pretty grand pity parties. (I still do. MS sucks.) And while you may want to hide out for a while, do it for only a little while. Reach out. I’m a social person and when I stopped going into the office to work from home, I started to feel awfully isolated. I am happily married to an amazing man but I do like to see other faces.

One of the first things I did after my diagnosis was tell my family and friends. I wanted them to know what I was dealing with. I also searched for a support group in my area and found a wonderful one in the East Bay – MS Fight Club. There’s nothing like sharing your story with people who fundamentally understand MS. I learn from them and I hope they learn from me.

My MS affects my mobility so I have an almost constant reminder of my disability but I find it crucial to do things that are unrelated to MS. I go to Pub Trivia, I have game nights, I have potlucks. I am thankful for my friends every day who care about me enough to ask about my health but also treat me the same as I ‘used to be.’

On this World MS Day, let’s think about MS and also forget about it for a while.

MS?!

What do I do next? I decide to be proactive and schedule appointments with the neurologists and figure out what to tell my family and friends.

I’m a talker and I have always been pretty open with my friends and family about myself and what I’m going through. They know me well enough to know there was something wrong anyway. I found talking about it was the best way to begin the coping process (Although I think coping will always be a struggle for me – it’s not easy to realize the course of your life has changed forever.) Since my MS is visible –it mainly affects my mobility so you can see that I am limping, using a cane off and on and/or resting a lot – disclosing my MS was a relatively easy decision for me to make. Telling others is an extremely personal decision. Follow your heart, your head, and this.

I am lucky. I have a compassionate and educated group of friends and a loving and supportive family. While they are concerned and sympathetic, they leave it to Adam and me to do what we need to do. They know I will share when I am ready. When you have been diagnosed with MS, you are the one experiencing the symptoms but your diagnosis will affect those around you too. I remember quoting Russ Feingold with his “Forward!” slogan.

Ahead is the only real place to go so I see a neurologist at UCSF to complete a few tests to confirm my diagnosis – I have another MRI, I walk, close my eyes and balance, get my reflexes checked, etc., and finally have a lumbar puncture (spinal tap). It is hard to diagnose MS. While there are tests to guide the doctor towards an MS diagnosis, it seems to be almost more productive to rule out all other possible diagnoses.

So now I’ve really got MS.

The Beginning of My MS Story

Sometime in 2000, I woke up and found that I could not stand. I was alarmed, to say the least. Adam, my then boyfriend and future husband, took me to the emergency room where I was barely examined and prescribed Vicodin. Which I took because what 22-year-old would say no to Vicodin? I didn’t feel satisfied with this evaluation but doctors knew what they were doing, didn’t they? Adam bought me the generic old person cane from Walgreens and I was slowly able to walk again. Over the years, I would experience weakness, pain, and numbness in my extremities. Somehow, I ended up seeing a rheumatologist. Over the next 10+ years, I listened to my various rheumatologists and took what they prescribed. 

In late 2010, I broke my ankle quite hideously. I ended up with a plate and 10 screws holding it together. I started to see a physical therapist that got me walking again. In 2011, my husband finished graduate school at UC Berkeley. His mother and my family were here in the San Francisco Bay area to celebrate. One day, while we were walking to dinner, my sister, Diane, noted that if she hadn’t known that I had broken my right ankle she would have thought there was something wrong with my left leg. Later, I relayed this to my PT. He watched me walk and said, “Curious. Very curious. This may be neurological. Have you had an MRI?” I got an MRI of my lower back. After it was examined, it was determined that a disc was pressing on a cluster of nerves or something. I was referred to another doctor who would give me an epidural. During this time, I hoped that it was just a spine issue. I saw this doctor and he examined me quite abruptly, took a look at my MRI, and said, “I don’t think you need a shot. I think it is MS and you should see a neurologist.” I started to cry and he left the room. He didn’t have the best bedside manner but I respected him because he could have easily given me the epidural  and been done with it. But he took the time to diagnose the problem instead of just getting rid of me. He gave me the names of two neurologists and sent me on my way. Before this I had spent years suffering, never really knowing what was wrong with me. I knew it wasn’t necessarily rheumatological but I didn’t know where else to turn. I am forever grateful to the PT who found me curious and to the spinal surgeon who took the time to examine me outside his particular realm of expertise.

I knew I had a scary and long road ahead of me now that I was diagnosed with MS but there was calm in finally knowing.

What’s in a name?

I decided to name my blog Peculiar Ideas About Beauty. This is a line from one of my favorite books, The Time Traveler’s Wife by Audrey Niffenegger. I worked at an independent bookstore in Portland, Oregon from 2000 to 2004. The owner of the store would often let us borrow galleys of upcoming books to read. He believed that his employees should read books in order to help customers. While I disagreed with the owner on a lot of things, I respected this. I chose to read the galley of The Time Traveler’s Wife. At one point in the novel, Henry introduces Claire to his father and friend. Claire exclaims that she finds crows beautiful and Henry’s father responds,” You have peculiar ideas about beauty.” This struck me not only in terms of the story but also as a fact of life. Don’t we all have peculiar ideas about beauty, really?

I created this blog in 2012 after I was diagnosed with multiple sclerosis (MS). I thought I would need an outlet for all that I was going through. The most important thing for me at that time was finding a name for this blog. It needed to be special to me. That was all I was able to do then. Strange that it took me over 3 years to write my first actual post. I could say that it took me a long time to process that I had MS. I could also say that I wasn’t ready to tell my stories. But I don’t think I will ever be truly ready to process that I have MS. For me, and many, multiple sclerosis is a crazy fucking ride.

Scientifically, MS is a disease in which the immune system eats away at the protective covering of nerves called myelin. It is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Personally, it has changed my life in every possible way.