323 results for “MS Awareness”

Going the distance for MS awareness

Posted March 6th, 2017 by

Meet Cheryl (CherylRunner), a marathoner living with MS. Since it’s MS Awareness Month, we sat down to chat with her about what she’s doing to raise awareness: running 7 marathons on 7 continents in a 12-month span. So far under her belt are South Africa, Argentina, Hawaii, Antarctica and Japan, and now she prepares to cross Austria off her list. See what she has to say about overcoming the physical limitations of her condition.

You’ve run 54 marathons and 41 of those have been after your MS diagnosis. How has running changed for you since your diagnosis?

Cheryl Hile MS marathon runner

Photo by Rachel Hatch

Running has given me so much. When I was first diagnosed and depressed, running was my therapy to cope with the overwhelming sadness. However, I started tripping and falling while running. I thought I was tired from overtraining. I soon learned that I was falling because I have a common symptom of MS called drop foot. My running became laborious and depressing. My neurologist told me to lower my expectations and that ignited a fire in me to not give up. I found an orthotist and he fitted me with an ankle-foot orthotic (AFO). It’s made of carbon fiber, so it’s light and flexible enough for running. It is not necessarily made for marathons, per se, but I make it work despite the cuts and bruises. I guess that is a long way of saying that running has made me stronger.

Aside from your custom carbon fiber ankle foot orthotic, what other things do you do to help with your running?

I cross train to help with cardio-vascular fitness. My husband and I ride 20-30 miles along Pacific Coast Hwy very early in the morning (traffic scares me, especially being clipped into the pedals).

I also lift weights. My right thigh is very weak from MS and I can only lift it 3-4 inches off the ground. I do a lot of compensating with my left side when I run. I try to strengthen all of my muscles to try to keep them in balance, but I do have atrophy in my right leg.

In general, what advice would you give for someone living with MS who wants to work towards becoming more physically active?

First, I have to throw in the caveat to talk to your doctor first! Next I suggest setting small, attainable goals. For example, if you don’t exercise at all, make a goal to walk 10-15 minutes, then start increasing by 5-10 minute increments when you feel confident.

My very first running race was a marathon (because I’m crazy). That was a big goal and I attained it, but I suffered a lot at the beginning. My first training run was down my block and I walked back home crying. My husband likes to tell everyone that story! But I kept at it and in 6 months I went from one block to 26.2 miles. It was a slow marathon, but I did it! However, I should have signed up for shorter races first to keep my morale high.

Small attainable goals and small concerted efforts to make change!

Right now you’re in the middle of a big idea you had to raise money for the MS Society. You committed to running 7 marathons on 7 continents in the span of a year. You’ve already run in Cape Town, South Africa; Buenos Aires, Argentina; Honolulu, Hawaii; King George Island, Antarctica; and Tokyo, Japan. Next up are Vienna, Austria, and Christchurch, New Zealand. What’s been your favorite experience so far? What’s been a challenge?

Cheryl Hile MS marathon runner

Photo by Rachel Hatch

I’ve had a lot of great experiences. My favorite marathon so far is Cape Town. The scenery was beautiful, the people were very friendly and even though it is a large international marathon, it felt like a tight knit community. The highlight of the trip for me was connecting with the Multiple Sclerosis South Africa group. They were absolutely lovely and even though our trip was short, we bonded. Meeting people and making friends are my favorite things about my trips. People really make it more special.

The White Continent Marathon was by far the biggest challenge. I was prepared for the cold, but I underestimated the terrain. It was very rocky (from pebbles to boulders) and it was so painful on my feet. I had to walk a lot of it because my right foot kept sliding. I can feel my left foot and use my toes to balance myself. However, my right foot is numb and I cannot move my toes well. That, coupled with a rigid footplate on my AFO, made it hard to keep steady on the undulating terrain. I was sore in places that I didn’t know had muscle!

We’ll be following up with Cheryl once she finishes her final two races in Vienna, Austria, and Christchurch, New Zealand. You can keep track of her progress on her blog!

On PatientsLikeMe

Cheryl talks about having drop foot, something reported by 990 members on PatientsLikeMe. She’s had success using an ankle foot orthotic (AFO) to treat it. Here’s what members have to say:

In fact, members have a lot more to say about this – 101, 941 forum posts worth, to be exact. See what they’re saying and learn more about who’s experiencing drop foot!

What are you doing to raise awareness about MS this month?

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How MS affects pregnancy — from our partners at MotherToBaby for MS Awareness Month

Posted March 14th, 2016 by

It’s MS Awareness Month, and this year, we’re focusing on how the condition affects pregnant women and their babies. Our partners at MotherToBaby recently shared an article that answers some of the questions that might come up for women who have MS and are thinking about having children. Check it out below…

MS: The Diagnosis That Doesn’t Mean Missing Out On Motherhood

By Neda Ebrahimi , Teratogen Information Specialist, Motherisk

As a counselor with Motherisk, the Canadian partner of MotherToBaby and a service of the Organization of Teratology Information Specialists (OTIS), I hear many stories from women about pregnancy. Some of those stories strike cords with me. Their urgency and desire to make the healthiest decisions possible for their future children is both understandable and admirable. In honor of National Multiple Sclerosis Awareness Month, I give you Nina’s story.

Nina’s Story

“I’m 31 years old, and I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS), when I was only 22. My first relapse was scary. I was writing my finals, and 2 days before my last final, I lost sight completely in one eye, and my legs felt so week and wobbly that I couldn’t stand even for a second. After going to the hospital and receiving several courses of steroids over 10 days, I started to improve but it took 2 months for my symptoms to fully resolve. And then, everything went back to normal, as if nothing had ever happened. I received my diagnosis several months after, and it felt like a death sentence. I had 2 more relapses before my doctor put me on disease modifying drug (DMD), and I started with Infterferon-B1a. Over the last 8 years, I only experienced 5 more relapses. The last relapse I had was only a few months ago; I lost sight in my left eye, and numbness that ran from my face to my toes on just the right side of my body. I have always been able to work full-time except when I’m experiencing a relapse, for which I’ve had to take a month off. I am a dentist, so not surprisingly I can’t carry out my job when I’m experiencing numbness in my hand. I met John 5 years ago at the MS clinic I used to visit. He was a nurse there. We fell in love, and despite of my illness he proposed to me last year, and we talked about having a family, with two children, hopefully one boy and one girl, and living happily ever after. It didn’t initially worry me that one day I may want children. John is crazy about kids, and I feel my maternal instincts kick in every time I hold a baby. Since we got married, my anxiety has been increasing proportionally to my yearning for having a child. I know my MS can’t be cured, at least not now, I know it can get worst over time, and eventually I may need support to carry out even simple tasks. Or Maybe I won’t, and I would be one of the few who never enter the progressive state. I don’t know if I’ll be able to care for a baby and meet his or her demands. What will happen after my pregnancy? I really don’t want to experience another relapse after I deliver. How am I going to manage my illness, and what will happen if I need to came off my DMD when I’m pregnant or breastfeeding? There are so many questions, and I don’t know who to turn to.”

Nina is not alone in her thirst for answers. MS is an autoimmune neurological disease with very different presentation. No two MS patients are exactly the same and symptoms can vary from just the occasional mild tingling in the finger tips to more severe symptoms that render the patient unable to walk or stand for several weeks. With Relapsing Remitting MS accounting for 85% of all MS cases, most patients will undergo a remissive state after an attack, and will resume their daily life with little or no hindrance. Some patients will continue to have modest symptoms during the remissive state which they learn to adapt to and manage by different medications and or lifestyle changes. As there are no current cures for MS, many MS patients live for decades with this disease, and must find the means to maintain a high quality of life as the disease progresses, which can be challenging in the later stages of the disease.

MS impacts many more women than men with a 3:1 ratio in North America. As the disease onset occurs during the reproductive ages, many women with MS face the dilemma of pregnancy at some point during their lives. Young women, like Nina, with MS planning pregnancies, have many questions. Because the disease presentation and progression varies from person to person, there is no exact answer and treatment and management must be tailored to the specific person’s need. However, I’d like to address some of the most common questions to help all of the “Ninas” out there:

1. “Would the disease adversely impact the pregnancy and my developing baby”?

Up until the late 1950s, women with MS were advised to terminate their pregnancies. With our advancement in the field, we know that this is almost never necessary. Many women with MS continue to have healthy babies, and research shows that there is no increased risk for having a baby with a structural malformation or developmental delay and many deliver healthy babies with no major complications. Although there is a trend toward lighter weight babies, the birth weight percentile remains in the normal range for most. Another observation has been the higher rate of miscarriage in the MS population with mixed results from different studies. The reason for this is not well understood, but the majority of miscarriages are in early pregnancy. While miscarriage rates in the general population are around 10-15%, in women with MS the rates are closer to 20%-30%. With successful conception, the chance of delivering a healthy baby at term is high, and women with MS should be assured that their disease is unlikely to cause harm to the developing baby.

2. “Would my baby also have MS”?
There is a complex interplay between genetics and environment leading to MS. While the risk of getting MS in the general population is 0.3%, having a parent with MS will increase this risk by almost 15 times. So children of women with MS may have a 3% to 6% chance of developing MS later in life, but the environmental and lifestyle factors may play the ultimate role in disease manifestation. Hence despite the genetic contribution, the risk for your baby developing MS remains small and can potentially be modified.

3. “If I stop my DMD when planning, what are the risks of having a relapse while I try to conceive?”
Depending on how long it takes to conceive, the drug free period prior to pregnancy may be a risky period for experiencing a relapse. While some women conceive after just one cycle, many will conceive after several months of actively trying to become pregnant. It will take 1 to 3 months (depending on the drug) to fully clear the system, and during this time, some may experience disease activity. If prior to starting the DMD you had very active disease, there is a risk that you’ll experience a relapse when you stop the medication, especially if it takes more than 3 months for you to conceive. The decision to continue DMDs is highly individualized and is determined on a case-by-case basis. You and your neurologist will determine the best mode of action.

4. Would having a pregnancy make my MS progress faster?
Pregnancy has not been shown to speed the disease process. In fact, pregnancy is a state of remission for many women with MS, and a time for optimal wellbeing. It is well established that relapse rates reduce by 70% by the third trimester of pregnancy compared to the year prior to pregnancy. However after delivery the relapse rate increases, with 60% of women experiencing a relapse in the first 3 to 6 months postpartum. While the risk is increased in the postpartum period, the course of MS tends to return to its baseline, and no worse than what it was in the year prior to pregnancy. Some studies have found a protective effect with pregnancy, with a delay in the long-term disease progression; however, more studies are needed to confirm this finding.

5. Would I be able to continue my DMD through the pregnancy?
Although many women with MS go through remission in the pregnancy, some will continue to experience disease activity especially in the first two trimesters. The decision to continue DMDs is dependent on several factors, including the type of medication, disease activity in the year prior to pregnancy, and the type of control achieved with the given DMD. The use of glatiramer, Interferon Beta 1a/1b, in pregnancy have not been associated with an increased risk for malformations and if you achieved great control with these drugs, and are at a high risk of relapsing, your physician may consider continuing your therapy through the pregnancy. The newer drugs, especially the oral DMDs, have not been well studied, therefore it is recommended that you discuss with your neurologist the best plan for the course of your pregnancy. There are ongoing research studies looking at the outcome of pregnancies following exposure to these medications. MotherToBaby and its affiliates are engaged in such studies. For study information or for the most up-to-date information about newer medications used to treat MS during pregnancy, call from anywhere in North America toll-FREE 866-626-6847.

6. What if I have a relapse during pregnancy?
While relapses during pregnancy are uncommon, they may happen, and can be quite severe for some women. Steroids are usually used to treat those relapses, although some success has been shown with IVIg therapy as well. A women that experiences a severe debilitating relapse during her pregnancy, may require the standard steroid therapy, while a women that experiences a mild flare-up may choose, in collaboration with her physician, to abstain from treatment. Systemic steroid use in the first trimester has been associated with a very small risk for cleft lip and palate, and use in the second half of pregnancy may increase the risk for having a smaller baby and for delivering prematurely (before 37 weeks gestation). However, it is recommended that you speak with your health care provider before you stop or change any medication. The benefits of taking a steroid and treating your condition should be weighed against these small possible risks. For more information, check out this fact sheet online: http://www.mothertobaby.org/files/Prednisone_6_13_1.pdf or call anywhere in North America toll-FREE 866-626-6847.

7. Should I breastfeed or start my DMD right after delivery?
The postpartum period is a period with a high risk of experiencing relapses. Data on whether breastfeeding has protective effect has conflicting results. Some studies suggest a protective effect, possibly due to the delay of menses returning, while others show no impact. Information on safety of DMDs in the breastfeeding period are scarce, however given the large molecule size of glatiramer acetate, and Interferons, it is unlikely any will transfer into milk. If they do, they are likely not to be absorbed from the baby’s gastrointestinal tract. There is no information regarding other DMD usages during lactation. The benefits of breastfeeding baby are numerous, but, ultimately, your functionality and ability to care for your child take priority. The decision to breastfeed or not may depend on your ability to breastfeed, especially since the demands of a newborn and the hormonal changes in the postpartum period can be very taxing on your energy levels and if you experience chronic fatigue due to your condition. Thus, if a woman (while consulting her physician) decides to breastfeed she may do so. However, if she needs to restart her DMD, currently she may be advised to stop breastfeeding.

Bottomline: While having MS poses physical and emotional challenges, it does not jeopardize a woman’s capacity to motherhood. With careful planning and close collaboration with your doctors and healthcare providers, and especially with some support from family and friends, you will be able to have successful pregnancies, healthy children, and out of control teenagers, just like any other woman. So if becoming a mother is something you have always wanted and looked forward to, having MS is more of a bump in the road rather than a life sentence, and with some maneuvering you can achieve your dreams. Happy parenthood!

 

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