Thursday, December 21, 2017

2017 Top HealthCentral Multiple Sclerosis Posts

From personal stories, embarrassing stories, and inspirational stories to research news, bizarre symptoms, and talks of life changes due to MS, we covered a little of everything in 2017.

Life changes with MS

A chronic condition like MS may mean not being able to enjoy the things you did before diagnosis — but it can also result in new pursuits and pleasures.

Life is created from memorable moments

Urinary incontinence is an embarrassing symptom of multiple sclerosis that can occur at the most inopportune moments.
Handling the ups and downs of multiple sclerosis takes practice, patience, and persistence.

Celebrating caregivers

Caregiving takes practice when MS is a third wheel in the relationship.
In 1992, Liz Hoy was diagnosed with MS. Since then, her husband Mike has cared for her and been a tireless advocate on her behalf.
It’s necessary to focus on self-care before you can care for a loved one in crisis.

Answering important questions

Distinguishing between the symptoms of multiple sclerosis and those of other conditions can be difficult at times.
The gut microbiome is a hot research topic these days. Some studies suggest that gut health might be associated with multiple sclerosis.

So how are you really doing?

When you’re living with a chronic condition, it’s not always easy to answer when people ask, “How are you?”
Focusing on mental health may help you to clean out the emotional clutter of MS.

Exercise to improve MS symptoms

Tai Chi, a mindfulness-based exercise program, has been studied in clinical trials to determine if it improves multiple sclerosis symptoms.
Vestibular rehabilitation therapy is an exercise-based treatment program designed to improve your brain’s ability to adapt to vestibular problems and to use other senses to compensate for deficiencies.

Be more than your MS

Lacy Gadegaard, founder and owner of Laced Hair Extensions, gets candid about how being diagnosed with multiple sclerosis saved her life.
Personality traits, such as openness to new experiences, may help to protect memory function and cognition in people living with MS.

Maintain access to accessible parking

Accessible parking is one of the more controversial issues in the MS community. Many people have mixed feeling about the need to park in spaces that offer increased access.
Once you have your placard, be sure to park within the lines of the designated spaces. Others need to park there too.

Facing common symptoms of MS

While some people with multiple sclerosis are heat intolerant and have trouble during the summer, others are sensitive to cold temperatures.
Dizziness associated with multiple sclerosis is about more than vertigo or loss of balance.
Pain in MS comes in many forms — neuropathic pain, musculoskeletal pain, spasticity, and spasms; each can make your legs hurt.

And less common MS symptoms

Hyperosmia, an increased sense of smell, is one of those weird MS things I’ve learned to live with.
Smell and taste are closely related, but an altered sense of taste may signal MS progression.
Trigeminal neuralgia (TN) is a symptom of multiple sclerosis that causes intense pain in the face and jaw.

Welcoming 2018

As we look forward to 2018, we invite you to live BOLD, live NOW, and be empowered to take control of your health. Please join us in our MS HealthCentral Facebook community and follow us on Twitter @MSHealthCentral.

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HealthCentral Top Multiple Sclerosis Posts of 2017 

Tuesday, October 31, 2017

Real MS Profiles: Meet Kathleen G

Kathleen G. was diagnosed with MS in 2006 after a very long year of testing. We spoke with Kathleen about her MS. Here is an excerpt from our discussion.

Q: How has MS impacted your life?
Kathleen: My life ended while I was waiting to be diagnosed. My brain didn't work right anymore and I couldn't do my job. I couldn't do any job because I didn't know how I would feel from one day to the next. My kids were in high school, middle school, and elementary school. I couldn't keep up with them. I was so emotional that they lost a lot of respect for me really fast.

Q: Have you made any conscious lifestyle changes due to MS? If so, have they affected your quality of life?
Kathleen: I went back to bare basics. Moved out of a big house that I couldn't get around in to a tiny one-bedroom apartment with utilities included. Something finally clicked inside me. I focused less on stress and trying to do what I should be doing and instead be OK with doing what I could.

Q: What are your greatest joys with MS?
Kathleen: I was so happy to just know what the heck was wrong with me, I didn't care what it was. At least I knew, and no one could say it was all in my head anymore!

Q: If your MS were an animal, what would it be and why?
Kathleen: A sloth—because that's how I feel most of the time. And because MS is ugly and dirty with even more disgusting twists and turns the more you learn about it.

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RealMSProfiles: Kathleen G

Tuesday, October 24, 2017

What Do I Mean When I Say I'm Fine?

Living with a chronic condition, such as multiple sclerosis, brings with it a heavy load of emotional, physical, and social challenges. The symptoms alone can be perplexing and are never the same between two people. Lately, there’s one social challenge that has been on my mind—how to respond to the question, “How are you?”
When in a group setting, I almost always respond with “I’m fine,” or “I’m good,” without thinking about it. An upbeat “I’m fine” is automatic. When in a one-on-one setting, I may pause and consider how exactly I want the conversation to go. If I’m with a very close friend, I might expand my response and go into more detail, regardless if the update skews positive or negative.
When talking to my husband, I want to be honest but I also know how much he wants me to feel well. Depending upon what type of support I need at the moment, I might allow my empathy for his feelings to color my response. I don’t like to feel as though I am dumping all my crap on him. But when I need extra support or understanding, I feel safe in sharing what’s really going on and how I feel about it. When I tell my husband “I’m good,” it generally means I feel confident that I can manage things at the moment.
Earlier this summer, I was experiencing increased pain due to knee osteoarthritis and was seeking care from my orthopedic doctor who prescribed a series of injections. My mother-in-law has had her own knee problems, so she felt sympathy for what I was going through. I visited her following one of my knee injections and she asked how I was. My response was a neutral “I’m okay.” Her brow furrowed and she replied, “Not good, then?” “No, I’m doing fine,” I insisted. Her experience colored how she heard my simple words.

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The Many Shades of I'm Fine

Friday, October 6, 2017

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.

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

Tuesday, August 22, 2017

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?

Tuesday, August 8, 2017

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.

Read this post in its entirety:
Why You Should Talk To Your Doctor About Your Sex Life

Thursday, August 3, 2017

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?

Tuesday, August 1, 2017

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

Thursday, July 27, 2017

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

Thursday, July 20, 2017

The Basics of Primary Progressive MS

Not all forms of MS are the same. The majority of patients who develop MS begin with a relapsing form of the disease that features acute neurological attacks and a waxing and waning of symptoms.

Approximately 10 to 15 percent of patients who develop MS have a progressive form of the disease from the beginning that features steady worsening of neurological function with occasional plateaus or minor improvements. A number of patients with relapsing-remitting MS (RRMS) go on to develop the secondary progressive MS (SPMS) form of the disease.

Primary progressive multiple sclerosis (PPMS) can be more challenging to diagnose and is definitely harder to treat than relapsing MS. Since PPMS doesn’t feature distinct clinical attacks like RRMS, the criteria for diagnosis is different. According to the National MS Society, the criteria for diagnosis of PPMS are:
  1. One year of disease progression (worsening of neurological function without remission), AND
  2. Two of the following:
  • A type of lesion in the brain that is recognized by experts as being typical of MS
  • Two or more lesions of a similar type in the spinal cord
  • Evidence in the spinal fluid of oligoclonal band or an elevated IgG index, both of which are indicative of immune system activity in the central nervous system   Fulfilling these diagnostic criteria may take years longer for PPMS than the equivalent does for RRMS.

Treatment for PPMS is limited.

Read this post in its entirety:
What is Primary Progressive Multiple Sclerosis?

Friday, July 7, 2017

Retired Hockey Player Talks About MS and Service Dogs

Retired Canadian hockey player Bryan Bickell sat down with HealthCentral to talk about hockey, multiple sclerosis, fatherhood, and his new service dog program for people living with MS.

Bickell, 31, played in the National Hockey League from 2006 to 2017 for the Chicago Blackhawks and the Carolina Hurricanes. He was diagnosed with multiple sclerosis in November 2016.

Health Central (HC): As a professional athlete, what were the initial symptoms that concerned you the most and how long did it take to get a diagnosis of MS?

Bryan Bickell (BB): I had a pain in my shoulder, which I thought was from sleeping on it wrong. I brushed it off, took some Aleve, and moved on with my day like many athletes with injuries do. Then it went down my arm and a week later down to my legs. I was really concerned. I’d been through a lot of injuries and knew that something was off. Days later, I had an MRI and got the news.

HC: What were your biggest fears after your MS diagnosis?

BB: If things were going to get better. I didn’t know if I was going to be able to play hockey, or if I would feel the way I did [at that moment] for the rest of my life. But due to the MS treatment I’ve been taking now for six or seven months it’s gotten a lot better. I feel awesome right now and things are looking positive.

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Bryan Bickell: From Skates to Service Dogs

Thursday, June 1, 2017

MS Is Like A Lion: Fierce, Scary, and Untamed

“My MS would be a lion; it can be fierce, scary, and at times untamed.” — Calie W.

HC: What are your greatest joys with MS?
Calie: My greatest joy with MS is being able to share my struggles, trials, and triumphs with the online MS community through articles published at Being open and honest about my diagnosis and how MS has changed my life has lifted a tremendous weight off my shoulders.

HC: If your MS were an animal, what would it be and why?
Calie: My MS would be a lion; it can be fierce, scary, and at times untamed. However, a lion can also demonstrate great strength and beauty. I know that when others look at me, they may focus on what they see on the surface. They may not recognize what I go through, because thankfully I don't have many visible symptoms. But underneath the surface, my MS can be scary and bite at any given time.

HC: What words of advice do you have for others in managing day-to-day life with MS?
Calie: Take care of yourself. I know that is so much easier said than done, but taking care of your body and giving yourself the time to rest is very important. That is something I wish I would have realized much earlier in my diagnosis.

HC: What words of advice do you have for others in managing the future with MS?

Calie: I encourage that we raise awareness and keep others informed as to what MS is, including its different forms and symptoms. It is important that others realize what we go through and know that each of us can be affected in different ways.

Read this post in its entirety:
RealMSProfiles: Calie W

Friday, May 26, 2017

Using Tai Chi To Help MS Symptoms

Tai Chi, also called Tai Chi Chuan, is an ancient Chinese martial art that has evolved into a multiple-element form of exercise, featuring slow, gentle, dance-like movements that encourage deep breathing and relaxation, improve balance, and strengthen muscles and joints. I’ve heard Tai Chi referred to as “meditation in motion.” One benefit of Tai Chi is that is doesn’t require any special clothing or equipment. It is one of the mind-body therapies in complementary and alternative medicine that begins where you are and doesn’t push you beyond your abilities, but does encourage you to explore the edges of your comfort zones.

How does Tai Chi help MS?

Several studies have examined the effect of Tai Chi on different aspects of living with MS and its symptoms. In a systematic review of the literature, researchers found evidence that supports the effectiveness of Tai Chi on improving quality of life and functional balance in people living with MS patients. A small number of studies also reported the positive effect of Tai Chi on flexibility, leg strength, gait, and pain. The effect of Tai Chi on fatigue, however, is inconsistent across studies.

Tai Chi and quality of life in MS

Quality of life (QOL) is a helpful measurement in MS studies because it encompasses physical, material, social, and emotional well-being, as well as personal development and physical and social activity. Five studies examining the effect of Tai Chi on QOL in MS were included in this systematic review. In general, MS patients who engaged in Tai Chi sessions over three- to twelve-week time periods experienced significant improvements on subscales of QOL such as pain, emotional well-being, energy, vitality, social function, health distress, physical health, mental health, and overall QOL.

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Benefits of Tai Chi for Multiple Sclerosis

Monday, May 22, 2017

What is Trigeminal Neuralgia?

A sharp pain explodes through your face and jaw. You think that perhaps an invisible bolt of lightning just struck without any warning. You’re not sure what happened, but you do know that you don’t want it ever to happen again. You may have experienced your first acute attack of trigeminal neuralgia.

Trigeminal neuralgia (TN), also known as the tic douloureux, prosopalgia, the “suicide disease,” and Fothergill’s disease, is a facial pain disorder characterized by brief electric shock-like pains that can occur abruptly, typically on only one side of the face and along one or more of the three branches of the trigeminal nerve. The trigeminal nerve, which is the fifth cranial nerve, is responsible for sensation in the face and motor function controlling the jaw.

The stabbing pain of TN most often affects the right side of the face. Frequency of attacks can range from one per day to 12 or more per hour. Common triggers of TN include chewing, talking, or smiling; drinking cold or hot fluids; touching, shaving, brushing your teeth, or blowing your nose; or sudden contact with cold air.

An individual can often point out exactly where the pain of TN is felt. In the majority of cases, the pain shoots from the corner of the mouth to the back of the jaw. In fewer cases, the pain spreads from the upper lip or teeth up to and around the eye and eyebrow.

There are two patterns of pain in trigeminal neuralgia. The first pattern is episodic and affects more than 50 percent of patients. The second pattern features constant pain, the mechanisms and development of which are not well understood. In episodic cases, the intensity of the pain typically increases from simply being present to an excruciating pain felt deep in the face in less than 20 seconds. Muscle spasms may accompany the pain.

Read this post in its entirety:
MS Signs and Symptoms: What is Trigeminal Neuralgia?

Saturday, May 20, 2017

Personalized Treatment for MS or Herd Mentality: What Does Your Neurologist Do?

People diagnosed with multiple sclerosis (MS) and their neurologists must make many decisions when it comes to treating the disease. With FDA-approved disease-modifying therapies, it can be challenging to know which one to use, if any.

How do doctors and patients choose? To make an informed decision, neurologists are expected to follow clinical practice guidelines that frequently summarize the available medical evidence. Meanwhile, patients are expected to do their own research and consider lifestyle factors and personal preference, as well as doctor recommendations.

It’s clearly unwise for neurologists to follow outdated clinical guidelines; consider that when the American Academy of Neurology (AAN) published its guidelines in 2002, only four treatment options were available. A less obvious concern is when neurologists ignore current clinical guidelines and instead follow the recommendations of other neurologists they know or experts in the field, a behavior called “herding.”

Herding can be detrimental to patient care, suggests a study published in January 2017 in the journal Patient Preference and Adherence.

What is herding in medicine?

Herding is a phenomenon in which individuals follow the behavior of others rather than making a decision independently. Herding occurs in MS care when one neurologist follows the therapeutic recommendation of a colleague even when this advice is not supported by clinical guidelines.

Read this post in its entirety:
Does Your Multiple Sclerosis Specialist Follow the Herd?

Friday, May 19, 2017

Exciting Moments on the Bike: Watch Out For Deer!

With the purchase of an outdoor bicycle last year, a world of possibilities has blossomed for me. My husband, Rob, and I have discovered new adventures and places to explore right in our own community. Just last week, we rode into Washington, D.C., for the first time along the Potomac River. The views were spectacular.

There was one ride last autumn that stands out in my mind. Rob and I packed up our bikes and explored a different part of the Washington and Old Dominion (W&OD) Trail. The W&OD is one of many former railroad, rails-to-trails corridors in the country. Rails-to-trails are frequently enjoyed by bikers, walkers, runners, rollerbladers, and more. They can get relatively crowded on beautiful days.

During the week of Thanksgiving, Rob and I packed up our bikes and traveled on a portion of the W&OD that we hadn’t seen before. We traveled far west before stopping for a break at a local brewery. I’ve come to learn that brew pubs and bike paths form a mutual symbiotic relationship.

By the time we began our return trip, the sun was beginning to sag in the sky and encounters with walkers on the trail became less frequent. Our handlebar lights lit up the narrow width of the trail as we rode into the growing darkness. At one point, I noticed a family standing next to the side of the trail; they were looking at something nearby. I was briefly puzzled... then I saw it!

Read this post in its entirety:
Adventures With MS: Riding With The Deer

Saturday, May 6, 2017

Preparing For My First BikeMS

In anticipation of our first year participating in BikeMS, here are some things I did to get ready.

To get ready for the ride, I still have quite a bit of training and conditioning to do. Not being a seasoned athlete, I realize that I need to be careful in how I approach getting ready. Here are some of the tips and strategies I’ve learned along the way.
  • Get the right fit. For comfort, safety, and efficiency, your bike needs to fit your body and be adjusted to reduce physical stress and maximize the strength of your efforts. Go to a local bike shop for expert advice.
  • Set realistic goals. Since I can’t already ride 30+ miles, I need to build up to that distance. I’m keeping track of my rides with a free phone app (e.g., Strava, MapMyRide) and attempt to increase my average ride by one to three miles each week.
  • Schedule rest. Although it is tempting to think that riding every day will be the best way to prepare, it’s the wrong way to build strength and endurance. Rest days are necessary to allow your body to repair muscle and begin to compensate for the increased physical demand. TrainingPeaks, a free resource for Bike MS participants, emphasizes recovery days and the need for varied levels of workout intensities.
  • Enjoy variety. It’s important not to do the same things every time you go out on the bike. Some training days should feature greater physical demands — increased elevation gain or sprints, for example — or easier, low-intensity spins that keep you moving but don’t wear you out. I like to alternate trails that present different challenges or easier sections.
  • Focus on hydration and nutrition. It’s vital to stay hydrated before, during, and after workouts. The amount of water and enhanced sports drinks you may need depend upon your body, the environment, and your workout demands. The National MS Society offers basic information on hydration and nutrition to get you started.

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BikeMS: Setting Goals and Going the Distance

Wednesday, April 26, 2017

How Animals Help Us Cope With MS

As I was writing this evening, my gray cat Oscar jumped up on the arm of my recliner. He purred loudly and rubbed affectionately against my arm. Distracting me from my work, Oscar laid it on thick as he thanked me in advance for the tasty dinner he was about to receive.

Oscar is my multiple sclerosis (MS) buddy. He is my friend. He is one of three cats who keep us entertained and provide lots of laughs and affection. Oscar frequently joins Rob and me in bed after we’ve turned off the lights at night, and he is usually right at my feet when I wake in the morning.

Oscar is a gentle soul who seems endlessly thankful to be a part of our family. A skinny stray who showed up on our porch, he was starving for affection as much as for food. I fed him, but he always asked for pets before eating. One rainy night, he showed up bleeding at our house. It was all I could take. I brought him inside the house, and from this moment forward, he became a member of our family.

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My MS Buddies: My Cats

Monday, April 24, 2017

Peeing in the Street: Embarrassing Moments with Multiple Sclerosis

The #MSMoment I’d like to share happened several years ago, but I still remember it like it happened yesterday. I felt fortunate that nobody was around to witness it, but that didn’t make me feel any less embarrassed.

Every six months, I go to the dentist for a routine cleaning and checkup. That’s something we each should do on a regular basis, because it’s important for our overall health. On a beautiful spring day a few years ago, I left my appointment around noon. With no music lessons scheduled until 4 p.m., I had plenty of time to get some lunch, go to the post office, and stop at the grocery store on the way home.

After leaving the dentist’s office, I went to my car, opened the door, and sat in the driver’s seat. As I turned the ignition, thoughts of the bathroom flittered across my mind. I hadn’t noticed any urge to go to the bathroom until that very moment.

“Maybe I should have stopped at the restroom on the way out of the building?” I thought to myself. But then I would have had to ask for the bathroom key, go to the restroom, and take the key back to the dentist’s office, when all I wanted to do was get on with my day.

“I could go back in. Or maybe I’ll just wait until I get to the restaurant for lunch. That would work.”
Read this post in its entirety:

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MS Moments: Urinary Incontinence in the Street

Saturday, April 22, 2017

Does Personality Affect Cognition in People with Multiple Sclerosis?

Multiple sclerosis (MS) is a chronic disease that frequently leads to neurological symptoms and disabilities. The effects of MS can result in sensory changes, vision problems, mobility challenges, impaired control over bodily functions, cognitive dysfunction, and altered moods.

The cognitive challenges of MS, while quite common, can be particularly disturbing. More than half of all people with MS will develop problems with cognition, according to the National MS Society. Certain types of cognitive functions are more likely to be affected by MS than others, for example:

  • Information processing (dealing with information gathered by the five senses)
  • Memory (acquiring, retaining, and retrieving new information)
  • Attention and concentration (particularly divided attention)
  • Executive functions (planning and prioritizing)
  • Visuospatial functions (visual perception and constructional abilities)
  • Verbal fluency (word-finding)
Read this post in its entirety:
How Does Personality Affect Cognitive in MS?

Thursday, April 20, 2017

My Husband, My Caregiver

Although I am the one diagnosed with multiple sclerosis (MS), I am not the only one who lives with MS in our family. My husband, Rob, lives with MS, too.

As is common in many relationships, Rob and I take care of each other. We have a fluid give-and-take that helps to make our household function smoothly. For example, while I’m busy teaching music lessons, Rob will often prepare dinner after he gets home from work. I usually take care of laundry during the days.

More unique and special to our relationship, Rob has become excellent at watching out for the intervening effects of MS. If I start to get overheated in the summer, Rob will encourage me to get something icy to drink. Better yet, he often brings me something to drink without mention. If I begin to have a cognitive meltdown from sensory overload, he gently guides me to a less confusing, less stimulating environment, so that I can think straight again.

Watching out for me didn’t come automatically for Rob; it took time, practice, patience, and careful attention. The more we as a team have learned about how MS affects me, the better we become at ameliorating some of its effects. We become a stronger team in the process.

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My Husband, My Caregiver

Tuesday, April 18, 2017

From Couch Potato To Outdoor Cyclist

On the bike, I couldn’t ride for even two or three minutes without my legs feeling numb and spastic due to MS. So I decided to back off my efforts and count revolutions instead of minutes with 300 spins as my short-term goal (150 for each leg). If I cycled for 300 rotations at a steady, slow pace, it would equal about five minutes.

That was the beginning of my long transformation from couch potato to outdoor cyclist. During that first year, I slowly transitioned from counting revolutions to counting minutes to counting miles. I also started counting calories too. After a year, I lost 50 pounds and could ride for 45 minutes on the exercise bike and still feel good afterward.

I started to dream of riding a real bike again. But I hadn’t done so since college, and I didn’t have a bike. Many months later, I went shopping. The image of me trying out bikes when I hadn’t even been on one in many years was funny. I eventually chose one and began riding it short distances. Just like with the exercise bike, I started with small goals: down the street and back, one mile, two miles, 15 minutes, 30 minutes, and more.

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From Couch Potato to Outdoor Cyclist

Tuesday, April 11, 2017

Keep Your Medicine Drawer Organized

One of the most common themes across different chronic disease communities is the large number of medications and supplements we often use. Some of us might keep those medication bottles in a box, a drawer, or a pretty flowered travel bag. My bag is full of current medications, extra bottles of supplements, drugs that are used only when I need them, and prescriptions I no longer use. For the medications that I use “as needed,” there are several bottles that tend to sit around for lengthy periods of time, the medication eventually expiring.

Keeping track of your medications can be challenging, particularly if you take several for different purposes. Sometimes it can be tricky to balance convenience — having all the medication you might want on hand at any given time — with safety — clearing out all of the half-used bottles of unwanted or expired drugs. Here are six tips for managing your medications:

1. Understand your medication
Keep a master list of all medications and supplements you use and carry this list with you in a wallet or pulse. Include information detailing: name of drug; purpose of the drug; correct dosage; how, when, and how long to take the drug; drug storage requirements; any special instructions; possible side effects and drug interactions to be aware of. Your list should also include the date it was last updated.

2. Use one pharmacy

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Clean Out and Organize Your Medicine Drawer

Wednesday, April 5, 2017

Real MS Profile: Felicia E

“Be prepared for the unknown and roll with it!” — Felicia E.

A HealthCentral interview with MS patient, Felicia E.
HC: Felicia, when were you diagnosed with MS? What led to your diagnosis?
Felicia: I was diagnosed in 2015, the same year I turned 50 years old. My legs had gone numb and tingly. My diagnosis was based on magnetic resonance imaging (MRI) and results of a spinal tap.

HC: How has MS impacted your life?
Felicia: MS has caused reduced physical activity and reduced cognitive function. Unfortunately, extreme fatigue keeps me from engaging in my previous level of activities.

HC: Have you made any conscious lifestyle changes due to MS? If so, has it affected your quality of life?
Felicia: I tried to go Paleo, but it wasn’t successful.

HC: What are your greatest fears with MS?
Felicia: I’m afraid of dependence on others, loss of ambulatory abilities, and bowel incontinence which has already begun.

HC: What are your greatest joys with MS?
Felicia: The sense of support and camaraderie of MS support groups.

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#RealMSProfiles: Felicia E

Thursday, March 23, 2017

Spring Cleaning Your Emotional Health

Over time, houses can become messy and cluttered. Heavy drapes keep out winter drafts, but block the cleansing light of the sun. As springtime breezes over the windowsill, cobwebs flutter in the corners. Until light illuminates the cobwebs and dust bunnies, they are too easy to ignore, allowing them grow into a fierce filament army.

In the past, I have described my own depression as a monster that hides in the corners. Most of the time small and miniature, the monster can be easily ignored. But allow it to grow unnoticed in the darkness and the mini-monster becomes a beast straining to break free from imaginary chains.

Dealing with emotions is not as easy and straight forward as spring cleaning. But I’ve found that if I acknowledge the emotions, really take the time and mindfulness to notice that they are there, the negative emotions lose some of their potency while the positive emotions gain strength. Shedding light on the emotions helps to know where to mentally sweep, as long as you do not “sweep” the emotions under your cognitive rug.

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Cleaning Out The Emotional Clutter Of MS

Monday, March 20, 2017

Meet Jessica P in #RealMSProfiles

“Continue to plan your future regardless of MS.” — Jessica P., @JesswithMS

HC: Have you made any conscious lifestyle changes due to MS? If so, has it affected your quality of life?

Jessica: I made the decision not to further my education. I am only able to work so many hours a week due to MS and the permanent damage it has caused. MS has been a huge financial burden to our family [so] I chose my children's future over my own. I’m also unable to participate in every school event or sporting events. Heat and cold intolerance make it hard, as well as the overwhelming fatigue.

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#RealMSProfiles: JessicaP

Friday, March 17, 2017

Meet Krystina E in #RealMSProfiles

“Find joy and peace in the small things. Your spirit still needs to be nourished.” — Krystina E., RunningToStayAlive (Instagram)

HC: Have your goals changed since you’ve been living with MS? If so, how?

Krystina: Yes they have. I was planning on going into nursing. With cog fog, shaky hands, and now a wheelchair, that's no longer a good option. Instead, I'm working toward a career in software development.

HC: What words of advice do you have for others in managing day-to-day life with MS?

Krystina: Get a doctor, get on medication, and stay on it. A lack of insurance has made me progress really fast. Also try to find joy and peace in the small things. Your spirit still needs to be nourished.

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#RealMSProfiles: KrystinaE