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.”
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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)
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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