Remembering Life Before MS: What I Miss Most

My multiple sclerosis diagnosis took multiple years. It wasn’t a quick affair. Years separated early attacks, including five years between a case of temporary blindness from optic neuritis and the loss of the use of my left hand and arm which finally led to a diagnosis. During those years, my life was evolving as well.

Before MS, I was actively building a career as a freelance musician in the Washington, D.C., area. At one point, I was teaching a weekly schedule of 44 private students while also performing in at least two or three concerts each month. The demand upon my time and energy was tremendous.

Since MS, I have become a wife, writer, patient advocate, speaker, consultant, moderator, medical reviewer, and new Bike MS participant. I will always be a musician and still teach private lessons in my home studio. My schedule is just as busy as before, although I am engaged in different activities.

What I miss most:

Chest-thumping sounds

I miss the tremendous sensation of the sound waves produced by 100 other musicians on a symphony stage traveling through my body during a performance. The joy of listening to perfect harmony and stylistic precision up close and personal. The mix of overtones in the ears that stimulate the brain in a most satisfying way. There is nothing quite like it.

Now, I have difficulty with sudden sounds that feel like an ice pick to the brain.

Separation of work and home

I miss that satisfying feeling of coming home after a long day of lessons and/or rehearsals to take my shoes off, sit on the couch, and chill with some late night television. With clearly defined boundaries, both physical and mental, of what is work and what is not work, it is nice to feel the separation between activities.

Now, I work from home. As a writer and community moderator, I can be “at work” 24 hours a day, anytime of the day. I find myself with my laptop computer in my recliner toggling between projects for hours at a time. And with the potential cognitive problems associated with MS, it becomes difficult to stay focused on any one project.

Hiking and crunching leaves

As a graduate student, I lived not far from beautiful Brown County State Park in Indiana. Hiking was particularly fun during the autumn, when leaves of many colors covered the ground. The combined sound of rustling leaves in the trees and boots sweeping through blankets of leaves on the trail was particularly satisfying on a cool, crisp morning.

Now, I need to be able to see any obstacles on the ground or risk catching my toes on the tiniest of surface imperfections. Tripping on air has become one of my special talents since living with MS has impacted sensation in my feet. Walking on any path that is covered with leaves, stones, or debris poses an extreme tripping hazard.

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Three Things I Miss Most About Life Before MS

MS Symptoms May Aggravate Osteoarthritis

Although osteoarthritis (OA) is generally considered to be a “wear and tear” condition affecting older adults, it can also affect individuals in their 40s and 50s. I was first diagnosed with knee osteoarthritis in my early 40s, several years after being diagnosed with MS in my mid-30s. My case of OA is tricompartmental, meaning that it affects each of three joint areas where the thigh bone and lower leg come together and behind the kneecap. Eventually I will need total knee replacement on both my left and right knees.

Do MS symptoms lead to osteoarthritis?

One of the more complex risk factors for knee OA is muscle weakness, particularly in the quadriceps. MS can be associated with weak thigh muscles. Researchers examining potential associations between MS and osteoarthritis hypothesized that the knee joint in people with MS might be more greatly affected due to problems with balance and muscle weakness and may result in earlier joint degeneration.

To test this theory, researchers used ultrasound to investigate whether there is a correlation between the breakdown of femoral cartilage — the cartilage that covers the end of the thigh bone — and MS-related disease parameters.

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Are Multiple Sclerosis and Osteoarthritis Connected?

Sex and MS: Speak Up! Your Doctor May Not Ask

During a routine visit with your neurologist, there is much material to cover. Your doctor will ask about symptoms, watch you walk, and conduct a neurological exam. He or she may also ask about your family life, work life, relapses, or treatment concerns. However, it turns out that many doctors may be uncomfortable asking about your sex life.

In a survey of 42 neurologists, members of the Consortium of Multiple Sclerosis Centers, more than 80 percent of respondents report routinely assessing for depression, anxiety, sleep, and pain—but only half ask about sexual dysfunction; 18 did not routinely assess sexual function; 24 did.

Multiple sclerosis (MS) can affect sexual function in women and men with MS, thus impacting quality of life. Symptoms of sexual dysfunction can include sensory changes, decreased lubrication, erectile dysfunction, decreased libido, or problems with orgasm. In some patients, spinal cord lesions can be associated with bladder, bowel, and/or sexual dysfunction.

Sexual dysfunction (SD) is a common symptom of MS that may be under-diagnosed, particularly in women with the disease. A survey of 86 women with relapsing-remitting MS revealed that 27 percent of respondents experienced SD. Persons with other forms of the disease may be more likely to have sexual dysfunction.

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Why You Should Talk To Your Doctor About Your Sex Life

Does Acupuncture Improve Walking in MS?

Results from a recent study, published in the Journal of Alternative and Complementary Medicine, demonstrate that acupuncture may improve walking in people with MS. The study included 20 people (60 percent female) diagnosed with relapsing-remitting MS who experience trouble walking.

Gait impairment was evaluated by the 25-foot walk test (T25-FW). Participants were randomized into two groups. Group A received “true” acupuncture while group B received “sham” acupuncture. Immediately before and after treatment, gait was measured. At least one month later, groups received the other acupuncture treatment and gait was measured again.

When using true acupuncture, 85 percent of cases showed an improvement in T25-FW test (with two cases showing no change and one case showing increased time to walk 25 feet following treatment), compared with 40 percent when sham acupuncture was done. The average improvement in the true treatment group was 13.9 percent, with greater effect in females than males, 17.5 percent and 8.6 percent improvement, respectively.

Can acupuncture help other MS symptoms?

A 2014 review of studies examining the effects of acupuncture on MS found that scientifically rigorous research is lacking. Authors identified fifteen articles that met their review criteria. Of those articles, five examined the effect of acupuncture on quality of life, three looked at the effects of acupuncture on MS fatigue, two examined the effects of acupuncture on MS spasticity, two examined the effect of acupuncture on MS pain, and three were animal studies.

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Can Acupuncture Help MS Patients Walk Better?

Fear of Change: A Relapsing MS Moment

There is nothing predictable or constant with multiple sclerosis. People living with the disease may have periods of time where not much seems to be going on. Other times, there may be relentless relapses that leave neurological debris in their wake. The high degree of adaptability required to mentally and physically handle these changes is tremendous.

Stability is a welcome blessing when it comes to living with MS or any other chronic disease. With stability comes some level of predictability. However, it doesn’t prevent the potential rollercoaster that changes, of any sort, may cause.

I’ve enjoyed a sense of stability for years now. In fact, I’ve only had one major relapse since December 2011 that occurred in February 2016. One reason for this streak of “luck” is a treatment that has proven to be effective for me. I’m what you would call a “responder” to the medication rituximab.


Recently I’ve encountered a threat to access of that same medication. Since I’ve been sick so many times during the past year, my doctor has ordered laboratory tests to check for levels of specific immune system components, called immunoglobulins. I don’t have the results yet; but based on concern for a potential immunodeficiency, my doctor has delayed my next round of infusions until we know more.

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MS Moment: The Recurring Fear of Change

Take Care of Yourself When You're the Caregiver

My husband is my number one caregiver. He does most of the grocery shopping and carrying of heavy or large items up and down the stairs at home. I’m capable of doing these things, but splitting the work between us is very nice and my osteoarthritic knees are thankful.

In recent months, my husband and I have been occupied with taking care of his mother. She has experienced a series of unfortunate health complications that require us to devote a significant amount of time tending to her needs. As a consequence, there has been much less time available to tend to my own.

This experience is teaching me the importance of taking care myself first before I can be of much help to someone else. This goes beyond the familiar analogy of putting on your own oxygen mask before assisting others in an airplane emergency. As your mental and physical energy are depleted, you must focus on your own needs to protect against sheer exhaustion, potential relapse, or full collapse.

As people with chronic illnesses, the quality of our caring is rich, but our capacity is limited. If we don’t take care of ourselves, we run the risk of slamming into that proverbial wall.

Ways to care for yourself

• Focus on your own health and wellness. Eat right, sleep well, and exercise. It’s too easy to skip meals or become sedentary when you are sitting for hours in hospital waiting rooms, doctors’ offices, or patient rooms. Keep up with your own medical needs.

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Being a Caregiver When You Have a Chronic Illness