I am not MS, by Alice Thomas

MS is not a suffix at the end of my name. My life with MS, is just my life. 15 years after my diagnosis an MS-free existence is as foreign to me as all night study sessions and the days when my RDA of fruit could be met with grape jello-shots and strawberry pop-tarts. That was another life. One that would hopefully seem strange and remote to me now regardless of my health status. My life with MS is not a separate thing. My life with MS is just my life.

When I was diagnosed I expected everything I knew about myself to change. Suddenly I was a Person With A Disease. I didn’t know what that meant but I was convinced I was about to become someone else. A statistic. A sick person. Irrelevant. Nothing else about me would matter. The first and most important thing people would learn and know about me would be that I had MS. I was terrified of how others would perceive me but more importantly of how my own sense of self might be lost to a new reality. This identity crisis which threatened to convince me I was ‘less than’ for simply having a disease, was as disabling as any physical symptom I’d experienced. 

The early years of my diagnosis brought about massive changes to my life. Optic neuritis meant I was no longer able to drive a car. Weakened legs caused me to change apartments because of stairs and I was forced to leave my job. MS introduced tremendous challenges to my world. But that’s not the whole story. It seems at best cliché and at worst sacrilegious to admit but there have been some positives. Eventually I took the crisis as an opportunity to re-assess what is important to me. It helped me clarify my priorities. I do what I love.

Over time I have adapted to my changing physical body and circumstance and surprisingly I haven’t stopped being me. I didn’t become ‘less than’. In fact in some ways it could be argued I became more me. The things that are fundamentally Alice cannot be altered by a disease. I am incontrovertibly a story-teller, a traveler and a lover of life. A singer, a volunteer, an art loving, wine drinking, dog mum. I am empathetic, enthusiastic, creative and kind. I am curious about the world. I am an advocate and an ambassador. I am a foodie, a fun time, a baker and a homemaker. An optimistic, advisor, a student and a teacher. My life as an artist, a wife, daughter, sister, aunt, friend, these are the things that define me. I am not my job, my car or some stupid apartment. MS is not the most important thing about me, nor is it the most interesting. I am not MS. 

Peace didn’t arrive overnight. Every loss has been mourned. I must consider X, Y and Z each day and while it’s true most may not, they have their own alphabet soups to contend with, full of realities and problems completely foreign to me. As novelist Tom Holt says, “Human beings can get used to virtually anything, given enough time and no choice in the matter whatsoever.” We can adapt. The degree to which we are able to reconcile and coexist with calamity is the degree to which we are able to find our peace.

Grieve the changes. Adjust expectations. Live your life. 

Life with MS is complicated. We argue a lot. But it’s my life and I’m grateful for it.

Alice Thomas lives in Toronto with her husband and dog. She is an avid traveler, an arts enthusiast and a cheese fanatic. She is the author of the blog Tripping on Air - My trip through life with MS.  
Alice Thomas lives in Toronto with her husband and dog. She is an avid traveler, an arts enthusiast and a cheese fanatic. She is the author of the blog Tripping on Air - My trip through life with MS.  

Watch This Video Of How Botox Helped A Woman With MS Battle Neurogenic Bladder

If you're reading this article, you, or someone you know, have likely dealt with some form of incontinence before. It's a common occurrence (more common than most think!), and can be a source of daily annoyance, shame and fear in our lives. 

For those living with Multiple Sclerosis (MS), bladder dysfunction is often present and can greatly affect the quality of one's life. Symptoms such as hesitation, interrupted or weak flow, incomplete emptying, incontinence, frequency, and pain are reported by many who suffer from MS.  However, there is hope.  Many treatments are available to those living with this condition.  Watch the videos below to see how Amy, an MS sufferer, bravely describes her struggles with neurogenic bladder, and her amazing transformation after she started treating it with Botox. 

Amy's Before Video

Amy's After Video

Video Roundup – Four Inspiring Stories Of People Who Have Overcome Neurogenic Bladders

4 Inspiring Stories of People Who Have Overcome Neurogenic Bladder

Becoming paralyzed or learning that you have MS or another neurological condition is anyone’s worst nightmare. The everyday freedoms that most of us take for granted suddenly become the main focus of life and things that were easy before become monumentally more difficult. We’ve rounded up stories from 4 inspiring people who have overcome tremendous obstacles and are determined to live life on their own terms. Watch their amazing stories in the links below.

Botox Injections For Neurogenic Bladder

Watch this self-taped video from Paralyzed Living about how he uses Botox injections to treat his neurogenic bladder.

Daniela’s Story

Watch Daniela’s inspiring story of how a freak accident left her a quadriplegic, unable to use her legs, and limited use of her arms and hands. Daniela struggled with bladder management, and finally took matters into her own hands by conducting extensive research into her options and finding a solution that has helped her regain her independence.

Audrey’s story

Audrey became paralyzed after an accident and suffered from bowel issues, but found the freedom to do what she wants from using Peristeen, a product for bowel management.

Amy’s Story

MS can wreak havoc on your bladder, resulting in urgent and frequent trips to the restroom, and in some cases, leakage. Watch this story from Amy, on how she used Botox to help her regain control.

Amy’s Video Diary – Before:  

Amy’s Video Diary – After:

Do you have your own story you’d like to share? Contact us!

Watch NAFC's Videos For Tips On Self-Catheterization

Being told that you have to use a catheter can be scary, but many people use a catheter to empty their bladders on both a temporary and a long-term basis. And while you might recoil from the idea at first, once you get the hang of using one and see the benefits it can bring, it you may wonder how you were ever able to get by without it.

With a little practice, using a catheter can become second nature to you.

Here are our best tips for using a urinary catheter.

  • Don’t be afraid to ask your doctor lots of questions. Catheters should be prescribed by your doctor and proper instruction should be given to you by your healthcare provider. If you are unsure of the process, speak up.
  • Be sure to keep the catheter and catheter site clean to avoid infections (UTIs are common with those using a catheter). Wash at least twice per day.
  • Use lubrication when inserting the catheter to reduce pain, discomfort, and friction – all of which may also help reduce infection.
  • Always wash your hands thoroughly prior to and after emptying the urine bag.
  • Be careful of tugging on the tubing, twisting, it, or stepping on the tubing when you are walking. It may be helpful for you to clip the tubing to your clothing to avoid this.
  • Always keep the urine bag below your bladder (below your waste) to prevent urine from flowing back into your bladder and causing an infection.
  • Drink plenty of fluid to help keep your urine flowing well.
  • Stock up on spare catheter equipment for emergencies.
  • Call your doctor if you experience any of the following
    • Trouble inserting or cleaning your catheter
    • Urine leakage between catheterizations
    • You notice any type of smell
    • Blood in the urine
    • Skin rash
    • Pain or burning in the urethra, bladder, or lower back
    • Swelling, draining, or redness in your urethra.
    • Any sign of a urinary tract infection, such as a burning sensation, a need to urinate often, a fever, or chills.

Learning how to use a catheter doesn’t have to be daunting.

Watch NAFC’s videos on how to self-catheterize for both men and women here.

Self-Catheterization for Women:

Self Catheterization for Men:

Our Favorite Avocado Recipe: Guacamole!

Our Favorite Avocado Recipe: Guacamole!

It’s National MS Month and we’re celebrating by whipping up a snack that’s super good for you – especially if you have MS. Avocados are a terrific source of healthy unsaturated fat and are chock full of antioxidants. In fact, a 2013 study from Food and Function found that avocados are so good for you that they may counteract other foods that are, well, not so good for you. Subjects were fed either a plain hamburger patty, or one with avocado. Those who ate the plain burger showed a spike of IL-6 (a protein that is a measure of inflammation) four hours after it was eaten, however those who ate the burger with avocado saw little change in IL-6 over the same 4 hours. Plus, triglyceride levels (which, when elevated, can contribute to diabetes, heart disease and kidney disease) also did not rise after eating the burger with avocado (more than after eating the burger alone), despite the added fat and calories of the avocado.

There are tons of great ways to take advantage of this super food – toss some slices atop a sandwich, throw them in a salad, or, our personal favorite, whip up a delicious side of guacamole. 

The Best guacamole Recipe

Ingredients

  • 2 large ripe avocados
  • 1/4 cup lime juice
  • 1/2 tsp cumin
  • 1 clove garlic, minced
  • dash of sea salt
  • 1 chopped tomato (seeds removed)
  • 1/2 cup chopped red pepper
  • 1 chopped jalapeño pepper (omit this if you don’t like the heat)
  • 1/4 cup chopped red onion
  • 1 tablespoon cilantro

Directions

In a large bowl, mix the chopped avocado, lime juice cumin, garlic, and salt. Then fold in the tomato, red pepper jalapeño, red onion, and cilantro. Serve with chips, on top of a burger, or as a dip for veggies.

What Is Neurogenic Bladder?

What Is Neurogenic Bladder?

Having a neurological condition presents many challenges, but one that few people likely think about until they are dealing with it is how the condition may affect your ability to use the restroom. Like many organs, the bladder is controlled by nerves that connect to your brain and spinal cord. When these functions are challenged due to a neurological condition, it can cause a person to have a neurogenic bladder.

What is Neurogenic Bladder?

Neurogenic bladder happens when there is a lack of bladder control due to a brain, spinal cord or nerve problem. Typically, the bladder has two functions – storing urine, and removing it from the body. These functions are controlled by communication in the spinal cord and brain. When a person’s nerves, brain or spinal cord become injured, the way they communicate with the bladder can become compromised.

There are two types of neurogenic bladder: the bladder can become overactive (spastic or hyper-reflexive), or under-active (flaccid or hypotonic).

With an overactive bladder, patients experience strong and frequent urges to use the bathroom, and sometimes have trouble making it in time, resulting in urinary incontinence.

In an under-active bladder, the sphincter muscles may not work correctly and may stay tight when you are trying to empty your bladder, resulting in urinary retention (producing only a small amount of urine) or obstructive bladder (when you are unable to empty your bladder at all). In either case, treatment is available.

What Causes Neurogenic Bladder?

Neurogenic bladder can be caused by a number of conditions. Some children are born with neurogenic bladder. Children born with spina bifida (when the fetus’ spine does not completely develop during the first month of pregnancy), sacral agenesis (when lower parts of the spine are missing), or cerebral palsy (a disorder that weakens a person’s ability to control body movement and posture) all may suffer from neurogenic bladder due to their conditions. Other medical conditions that may cause neurogenic bladder are Parkinson’s disease, Multiple Sclerosis (MS), spinal cord injury, stroke, or central nervous system tumors.

What Are The Treatment Options For Neurogenic Bladder?

Luckily, there are many treatment options for neurogenic bladder. Treatments vary depending on whether you have overactive bladder or urinary retention. To learn about treatments for these conditions, click through the links below.

Treatments for Overactive Bladder

Treatments for Urinary Retention

A neurogenic bladder doesn’t have to limit your life. Don’t be afraid to explore your options and find a treatment that works for you.

Do you have a neurogenic bladder? Tell us about your experience in the comments below – we’d love to hear about treatment options that have worked for you!

Best Vitamins For MS

Best Vitamins For MS

Multiple Sclerosis (MS) is a chronic condition that affects the central nervous system. When you have MS, you may experience a variety of symptoms ranging from mild, to severe.  Because the cause of MS is not known, most treatments target the symptoms of the disease.  There are many pharmaceuticals that are used to treat MS, but many people also use a variety of vitamins and supplements in addition to their conventional treatments to help alleviate their symptoms.  Check out this roundup by Everyday Health of the most common supplements that MS patients use to treat the condition. 

As always, remember to discuss any new treatment with your physician. 

Are there any other vitamins that you use to help treat your MS symptoms?

Pelvic Floor Disorders Are Common Among Patients With Multiple Sclerosis

Pelvic Floor Disorders And Multiple Sclerosis

Multiple Sclerosis (MS) is the most common autoimmune disease presently affecting approximately 2 million people worldwide. 

MS is a disease of the central nervous system. The central nervous system is the hub for the autonomic nervous system and the somatic nervous system. These systems regulate many parts of your body’s mechanics. Most notably: blood pressure, heart rate, bowel activity, sexual arousal, skin sensation, and muscle control.  

In patients with MS the immune system attacks the material that insulates nerve fibers. Without insulation the nerves of the central nervous system cannot communicate with the rest of the body.  This faulty communication between the brain and spinal cord often results in muscle weakness, abnormal sensation, psychiatric problems, and difficulty regulating breathing, blood pressure, and temperature.  Loss of bladder or bowel control can be a result of muscle weakness; almost half of MS patients report bladder and or bowel complaints as the first symptoms of multiple sclerosis.

Sixty-eight percent of individuals with MS experience symptoms of one or more Pelvic Floor Disorders (PFD). PDFs are a loss or lack of bladder or bowel control and can include urinary incontinence, urinary frequency and urgency, bowel incontinence, sexual dysfunction, pelvic organ prolapse, and pelvic pain related to a “spastic” pelvic floor.

Among MS patients with PFDs the most common diagnosis are overactive bladder (69%), voiding problems (41%), Sexual dysfunction (42%), and fecal incontinence (30%)[i].  These symptoms represent major detriments to quality of life. 

The good news is that patients with MS can benefit from the same behavior modifications as anyone else with a pelvic floor disorder. Pelvic floor neuromuscular rehabilitation, often referred to as “pelvic floor therapy”, is a behavior modification practice of retraining the pelvic floor muscles using techniques like pelvic floor muscle training, biofeedback therapy and electrical stimulation. 

Modern methods of pelvic floor rehabilitation such as The Pfilates Method™ and The VESy Lab™ utilize movement taken from Pilates and Yoga to provide greater pelvic floor response.  The key to success with pelvic floor rehabilitation is establishing a practice that continues for a lifetime.  Working with a specially trained Physical Therapist provides excellent results and should be considered an element of any care plan for MS patients with bothersome pelvic floor symptoms.

[i] Int J MS Care. 2014 Spring;16(1):20-5. doi: 10.7224/1537-2073.2012-052.

Dr. Bruce Crawford is Dr. Bruce Crawford is a Board Certified Urogynecologist and the creator of the PfilatesTM program of pelvic floor rehabilitation. He has personally trained over 1,500 physical therapists and fitness professionals in North America, Asia, and the UK. Dr. Crawford also originated the VESy LabTM Method of optimizing pelvic floor fitness training.
Dr. Bruce Crawford is Dr. Bruce Crawford is a Board Certified Urogynecologist and the creator of the PfilatesTM program of pelvic floor rehabilitation. He has personally trained over 1,500 physical therapists and fitness professionals in North America, Asia, and the UK. Dr. Crawford also originated the VESy LabTM Method of optimizing pelvic floor fitness training.