Who Wants to Know?

Posted on June 7, 2017 by MSAA

By Lauren Kovacs

MS has so many symptoms that it is hard to pick one that is talked about the least. I will pick the most embarrassing, potty issues. Admit it, no one touches this with a 49 1/2 foot pole.

Doing “the pee pee dance” is not often brought up. Most moms can pick out a kid doing it though. Dancing is not usually an MS thing either. A pee pee wiggle or shift is all many of us can do.

One minute you are fine and the next minute the dam is about to blow. Not much warning is how most of us roll. Ladies after your period, I know you are draining off that bloat.

Your skinny jeans don’t fit because of the bloat. Skinny jeans are hard to peel off quickly when you got to go, NOW! You can’t wear them any way. Leggings are a nice alternative.

I was never a fashion plate. Being trapped in girls sizes never allowed for much sexy dressing. Being tiny does, in fact, carry some serious disadvantages. Getting things tailored is not exactly practical for me.

Now, I am looking to replace my cute zipper/button shorts with the pull-on style. Easy off when I really got to go. Plus, pulling them down or up, with one hand while using the grab bar for stability with the other is easier.

While athletic shorts are not super flattering, they give me a fast pass to board the potty. Bikers shorts underneath then help keep an incontinent pad in place. That is a mental crutch for me. It is there just in case. I only employ that strategy on long trips. I worry about peeing myself a lot.

Now I stop to tinkle at every place possible. It drives my husband and sons batty. My young iron bladder was replaced long ago by pregnancies and age. Then throw the MS into the mix. Bad combo. Kind of like when my son dips watermelon in ranch dressing. The combo is never good.

On a trip to Canada a few years ago, I used the potty every chance I got. My husband joked that I peed my way through Toronto. Maybe, but I felt secure in my bladder. I never worried about the dam breaking.

I can’t think of potty accidents as being no big deal or just an MS thing. It can be crippling to plan around and deal with. The worry and fear of potty accidents are very scary monsters. They are very real monsters for MS folks.

I always make sure my bowels are clear, before I leave the house too. I get up and begin my day, before everyone else. This gives them the signal that they need to be clear. Gross, but still an unspoken MS thing.

I carry extra pants/shorts in my purse. I roll them and secure with hair ties. Guys may have to carry a man bag. Sorry dudes. Some things you can’t stuff in your pockets.

I went from a diaper bag with stuff for the kids/babies to a large purse. The kids are older now, but tissues, sunscreen, Purell, Advil, Band-Aids, cough drops, and the like are always needed. In a way it is the family bag. Someone always needs something and my purse has it.

Prepare for the worst. One thing I learned from my sons in Boy Scout is to always be prepared. My purse is heavy, but someone is always digging through it. They make fun of its weight, yet my purse is essential to the entire family.

Worrying about potty issues will not rain on my parade. If the storm comes, I am prepared. Make room for worries like fatigue and heat and not potty issues. Try and live the wee bits of life that you can.

Trying is all we can do. Ask a fellow MSer what they do about potty issues. (Go for someone of your same sex. Plumbing matters). Chances are that most will be happy to share. It is mortifying when you have an accident. Have a plan in mind. I am the typical “worst case scenario” lady, but at least I try to be prepared.

Dealing With Embarrassing Symptoms: Constipation

Posted on June 5, 2017 by MSAA

By Stacie Prada

When MSAA asked if I wanted to contribute something for their theme this month I knew I had a lot to say, but I was uneasy being frank about a topic that would be on the internet for anyone to judge. It was exactly that reason why I didn’t play it safe and just talk about embarrassing symptoms generally. Because I felt a bit of fear sharing my experiences with constipation, I decided it was the perfect one for me to discuss. Courage gathered and challenge accepted. So here goes…

There’s no glamour in being good at living with a chronic illness, but there is dignity in exhibiting confidence and acceptance of the reality of living with an incurable health condition. Aging gracefully is met with admiration, and I maintain that living confidently and openly with an illness is worth undertaking. People living with an illness deserve to live a life without shame or feelings of inadequacy for circumstances beyond their control.

Constipation is a common multiple sclerosis symptom. It’s embarrassing, and it’s an uncomfortable topic to discuss. Try to get over the embarrassment of bowel problems. If the doctor doesn’t have previous experience with an embarrassing issue, it won’t be the last time. You may be teaching the doctor something that will be useful for the next patient.

People that have helped me with different aspects of MS constipation over the years have been my Primary Care Physician, Neurologist, Physical Therapist, Urologist, Naturopath, yoga instructor, people in my MS Self Help Group, and close friends who have had their own experiences or been caretakers for their parents.

The MS Self Help group I’m in doesn’t ever respond, “T.M.I.,” or shut down a conversation when they’re uncomfortable. They may get quiet and let others speak, but I’ve never seen someone tell a person the topic isn’t appropriate. Meetings are a perfect resource and safe environment for sharing our specific problems and learning what other people do.

People are trying to be helpful when they diagnose your problem. They’re sharing what worked for them in the past, and they’re excited that they might be able to help you. With constipation though, it’s necessary to look at the consistency of your poop before deciding how to fix it. Most treatments assume you’re constipated because medications are hardening your stool or you’re not getting enough fiber or fluids in your diet. Sometimes those suggestions can help alleviate constipation. But with MS, that may not be the cause or remedy.

Sometimes the problem isn’t the consistency of stool; it’s that the poop should be able to move but won’t. Your fiber intake and hydration level can be perfect and your poop can be the perfect consistency, but the inner and outer anal sphincters may not be operating on command. The problem can be that the nerve messages flowing from the brain to the anus aren’t getting there to let a bowel movement happen naturally. It can also be that spasticity is refusing to let the muscles relax. If poop is the right consistency, then more fiber doesn’t help with this. With laxatives, you can get the poop to a diarrhea like consistency to alleviate unsatisfying bowel movements. While it’s a relief to empty the colon, it’s a roller coaster approach to dealing with constipation.

Pooping regularly and easily requires the perfect combination of good stool consistency and the anal sphincters functioning correctly. When the poop is good but MS lesions are blocking nerve messages or spasticity is wreaking havoc, there are a number of things that can help:

Self-diagnosis: Learn how to detect the root issue causing constipation. Is it stool consistency, malfunctioning nerve messages or something else?
Schedule: Allow time for coffee, tea, or medications to take effect before you need to be somewhere. It may require getting up earlier and taking more time in the morning.
Movement: Stretch, twist, and move the mid-section to shake up the system to help induce a bowel movement. Exercising on a stationary bike, elliptical, or treadmill is good since you’re likely to be close to a bathroom when you feel you need to go.
Self-massage: Look on the internet for “self massage for constipation.” There are a lot of videos and suggestions for how to massage the abdomen to induce a bowel movement.
Breathing: Look on the internet for “breathing exercises for pooping.” Focusing on breathing and moving the belly can help focus attention away from the sphincter, relax the rest of the body, and trigger the involuntary muscles that can help a bowel movement.
Gut health: Probiotics and prebiotics can help maintain regularity, and they come in a variety of forms from pills and liquid supplements to fermented foods and yogurt.
Bowel training: Learn what each muscle in the pelvic region feels like when it’s tightened and when it’s relaxed in order to better control them. Kegels can increase the strength of the muscles and the ability to control them. Biofeedback with a trained professional can help with learning how to better control the external anal sphincter. The internal sphincter isn’t under voluntary control, but learning to relax the muscles in the area can help with bowel movements.
Pooping position: Make sure to sit in a position that isn’t making it harder for the body to have a bowel movement. A foot stool like a Squatty Potty creates a squatting position while sitting on a toilet so that the colon is straight and not kinked.
Supplements: Senna and magnesium are among the many, many laxatives available in pill, liquid, and tea form available to soften stool if needed.
Enemas & Suppositories: Saline enemas and glycerin suppositories can be effective for emptying the bowels when constipation lasts too long and immediate action is needed.
Botox injections and muscle relaxing medications are treatments that can help neutralize the effects of spasticity which is another common MS symptom that can lead to constipation.

The body is an engineering marvel, and when it works well it seems super simple. When things stop working as well, it takes a lot of self-discovery and research to figure out what’s going on. Embarrassing symptoms are frustrating, because they drastically increase the discomfort quotient and reduce the options for gathering treatment options.

Learning to overcome feelings of embarrassment will go a long way to diagnosing and finding treatments for symptoms. Be courageous. Be confident in your duty to advocate for your well-being. Be a good example and resource for others who may need to find their own courage to do this someday.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with multiple sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

June 2017 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

Posted on June 2, 2017 by John MSAA

MSAA is very proud to present our 2017-18 Art Showcase – celebrating the work of artists affected by multiple sclerosis (MS).

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

Susan Russo – Pearland, TX
Love Unconditional

About the Artist:
“I was diagnosed with RRMS in 2001. This disease has changed my life in an amazing way. Funny how diseases tend to do just that. You either give up or battle on. I choose to battle on.

I’m not perfect. I have rough days. I cry. I get angry. But then, I pick up a paint brush and I start to create whatever I am feeling. I get lost in a beautiful world of lines and shades and colors. The creation of something visually beautiful helps me to refocus on the fact that I am so much more than my MS.”
Read more

What do you want people to know about MS?

Posted on May 31, 2017 by MultipleSclerosis.net

Living with a chronic condition like MS can be very difficult and frustrating. Explaining to others what it’s like to endure life with MS can be even more frustrating. Our community members have shared with us what they wish others knew and understood about MS.

Of the many symptoms that trouble those with MS, one of the most common that is misunderstood is fatigue. MS-related fatigue is hard to understand, yet it is so important for family, friends and caregivers to comprehend. All of us have experienced fatigue at one point or another, but MS-related fatigue is like no other. MS fatigue is significantly different than fatigue experienced by those without MS and it is important to recognize the differences.

“MS related fatigue is not the same as being tired.”
“MS fatigue is not caused by losing out on sleep.”
“MS is exhausting and can cause extreme fatigue and horrific pain.”

MS fatigue is present no matter what. The simplest of tasks become incredibly difficult, and it takes so much energy to do things that others take for granted.

“Simple tasks like taking a drink or going to the bathroom are unbelievable difficult.”
“No amount of sleep or rest will help my fatigue.”
“It’s not like you are too exhausted to do something, it’s that you are too exhausted to do anything.”
“I’m not lazy, I just hurt and need to rest.”

Although fatigue is one of those invisible symptoms, it can significantly interfere with a person’s ability to function at home and work. Our community members dealing with MS want others to know that fatigue is a real issue and it affects their daily life immensely. MS-related fatigue can cause cognitive impairment, clumsiness, and poor balance.

“Fatigue is something I encounter at some point every day of my life.”
“My fatigue occurs on a daily basis.”
“Fatigue can come on suddenly, which means I have to cancel plans on short notice.”
“My fatigue comes on easily and suddenly and can worsen as the day progresses.”

Our community members shared with us that along with their fatigue, comes stress, anxiety and depression. The frustration can bring on anger and impatience. It is so important for family and friends to understand where this is coming from.

“Pain makes tolerance hard.”
“I get so frustrated with myself and I get angry with others.”
“I have less patience for people and things.”
“I never used to be short on patience, but in recent years, my fuse has gotten very short.”
“At times, my anger can rise more quickly and there are fewer filters.”
“I snap at everyone but don’t mean to.”

Our community members also wanted others to know the true “invisibility” of MS.

“I may look fine on the outside, but I feel terrible on the inside.”
“MS makes you appear normal on the outside, but wreaks havoc on the inside.”
“Others can’t necessarily see our limits, as we see and feel them.”

It is also important for our family, friends and caregivers to know that MS is a constant battle.

“It’s on my mind always, even when I feel well.”
“MS is something you think about every day.”
“It’s unbelievably hard to live with-mentally, physically and emotionally.”
“This is not something I chose.”

Finally, our MS community members wanted others know that life is not easy and every day can be a different challenge!

“It’s a roller coaster…you have ups and you have downs, twists and turns, except it’s never fun.”
“No two people progress the same.”
“It can knock you off your feet at any time.”

One common theme that came up frequently from our community, and stands on it’s own as a constant reminder:

“It’s out of my control.”

Educating the people in your life, though often challenging, can help you receive the empathy and understanding you so deserve.

Memorial Day 2017

Posted on May 29, 2017 by MSAA

Memorial Day is regarded by many as the unofficial opening of the summer season. You may celebrate with family cookouts, a day at the beach, a relaxing day at home, or at a local parade. However, it is also important to remember that Memorial Day is set aside as a day to remember all of the service men and women who have fought and died for our country.

On this national day of remembrance, MSAA honors all of the men and women who have fought courageously for our country and given their lives in its service.

Please note that MSAA’s offices will be closed on Monday, May 29th in observance of Memorial Day. We will be back on Tuesday, May 30th.

Have a safe and happy Memorial Day!

Summer…Here I Come

Posted on May 26, 2017 by MSAA

By Penelope Conway

Summer is almost here. It’s a time for pool parties, vacations, picnics, gardening and concerts in the park. With multiple sclerosis it’s also a time of fatigue, weakness, and heat sensitivity that tends to make all my symptoms a gazillion times worse.

The warmer it gets, the more numb my body becomes. I can actually feel the numbness as it creeps up my arms and legs, and as it works its way down my face, neck and chest. My vision becomes more blurred and I lose color clarity in my left eye which can be quite weird. My legs won’t cooperate with one another, I drop things more frequently and naps are a necessity.

Summer for me is a great struggle as I select between the things I know I can do, those that I can’t do and the ones I decide to soldier through limping and dragging my body along. I know one thing for sure: the inventor of the air conditioner should have been given the greatest achievement award that existed at the time because without it, I wouldn’t survive.

Not only do I hibernate in the winter, I do so in the summer too. MS and heat just don’t mix together very well. My body can attest to that.

If I have to be out in the heat of the day away from the coolness of my indoor environment, I try to plan around the hottest times by doing things in the mornings before the temperature becomes unbearable. When I can’t plan around my mornings, I make sure to have ice with me in one form or another in order to keep my core temperature a bit more controlled.

Ice vests are awesome. I never thought I would like wearing one because most of them aren’t very stylish. I thought I would look like a fisherman wearing a tackle box or a construction worker packing pockets of nails, but they actually aren’t so bad. Most of the time people don’t even realize I’m wearing ice. I’ve turned it into my own personal trendy style. Even healthy people get jealous and want one for themselves.

I also try to keep ice water with me to sip on. Sometimes just holding the cold bottle is enough to get me through a bad moment. That and wrapping a cold wrap around my neck help tremendously.

My freezer has a shelf dedicated to ice packs for my vest, frozen neck wraps and partially filled water bottles frozen and ready to be topped off with cold water. It’s amazing how much ice gets me through a hot day outdoors.

Air conditioning, ice and careful planning are my summer norm now. You may not find me hanging out at the beach watching a game of volleyball or spending the day at an amusement park waiting in long lines for the roller coaster, but I will still be having fun and possibly eating a snow cone or two.

Yes, multiple sclerosis has limited me. That’s a fact. But even with my limitations I am able to do things that I never thought possible thanks to innovative technology and devices that help to keep my body temperature regulated. Summer…here I come!

Oooh…I think I just heard the ice cream truck going down the road. Help. Does anyone have a dollar I can borrow?

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

If You’re Not Staycationing…

Posted on May 24, 2017 by Angel Blair

Earlier this month I talked about considering a staycation in regards to planning and preparing for the upcoming summer months. Not everyone may be staycationing around their home this summer so I wanted to talk about travel preparations if summer is going to take you out of your backyard. In a prior post about summer traveling, we reviewed some things to think about and prepare for when creating your travel itineraries. Considering things like accessible accommodations, materials needed for the trip, and who you can work with for assistance were some of the discussed topics. It’s important to do what you can when making travel arrangements so you can be prepared as best as possible, especially when dealing with an unpredictable disease like MS that makes its own plans a lot of the time.

While the planning piece of the trip is significant, let’s circle back to the beginning when you’re thinking about your destination. What’s important to you when deciding where to travel? What does the decision process look like? Everyone has their own needs and wishes when contemplating journey destinations; many even have a ‘bucket list’ of desires that they wish to accomplish at certain points of their life. Some individuals may have a random selection method they use to pinpoint their vacation spot—pick a point on the map and go. Others are very methodical in their decision making because there may be multiple factors that need to be taken into account to plan the journey. Either way, it’s good practice to be mindful and considerate of what your needs and wishes are and to not be afraid to fulfill them. Half the fun is in the planning so enjoy even these smallest of moments along the way.

What are some of your plans for the upcoming summer months?

Summer is the Carnival of Life

Posted on May 22, 2017 by MSAA

By Lauren Kovacs

Step right up and get your tickets for the carnival of summer with MS. Don’t be shy about entering the MS fun house. Try and visit places before the landscape melts in the summer sun. Distortions can be fun and dealt with at the same time.

MS is not fun, I know. Attack it with caution and preparation. Fatigue is an annoying clown that follows you around the carnival. It taps you on the shoulder just when you get your cotton candy. It makes you see it as a fluffy pink pillow. A nap would be nice. Take charge and eat it. I hate clowns.

Sandals can mean cool (temperature wise) feet. Cool feet often lead to cooler bodies. If you are a lady treat yourself to a pedicure first. I recently could not expose my toes because my son told me my feet were “jacked up.”

Stay cool by hanging out in the shade, if you skip a ride, for example. Eating ice cream or a snow cone can help cool you. Just use two hands because fatigue and/or heat can bring on tremors. I learned this by launching my ice cream cup at my mother-in-law. It missed and we laughed.

Laugh at yourself. MS can be funny. It can be very mean, but humor helps calm that beast. If you make light of something you did, it seems to help everyone to move on. Yes, I threw my ice cream cup. Funny. Next.

Wear wrap-around polarized sunglasses, and a hat that you can wet down. I had my manual wheelchair, when we went to a theme park recently. One of my sons pushed me and I occasionally closed my eyes to block out over-stimulation from sights. The glare was reduced when my eyes were open. Too much to look at can increase my fatigue. Glare drives me nuts.

Drinking only water can help limit bathroom trips too. I love soda and I often need the kick from caffeine. However, sticking with water is better. Fewer bathroom trips also help limit fatigue. Wear an incontinent pad, if you need to. They are bulky, but if you are sitting no one knows.

Limiting sights and stopping in shade helps slay the fatigue clown. Only drinking water limits the energy exertion involved with numerous bathroom breaks from caffeinated beverages. Proper sunglasses and hats you can wet down make a big difference. Wearing sandals, if your toes are pretty, can help keep your body cool too.

The summer carnival of life with MS can be tough to navigate. We are always trapped in the fun house. I know it is not really fun; however, the many distortions in our lives can be dealt with. Preparation and humor can help smooth that wavy mirror in the MS fun house.

Go enjoy yourself. Limits are all around us, but do your best. Shade, frozen treats, and limiting energy sucking activities can assist us. Try and stay involved and fight the inner hermit. Send that fatigue clown to the naughty corner, while you enjoy life. Know your limits and have no regrets at the same time. Have a churro. Chocolate melts.

MS Conversations Named One of the Best MS Blogs

Posted on May 19, 2017 by MSAA

Last week, our friends at Healthline published their list of the best multiple sclerosis blogs for 2017, which includes MS Conversations! Every year, Healthline compiles a list of the best blogs for the MS community based on the information provided and the personal stories shared throughout the year.

MSAA is thrilled to be included on this list, and we would like to thank all of our contributing writers and our guest bloggers, who share their powerful and unique perspectives on living with multiple sclerosis with us every month!

Check out the full list of winners on Healthline’s website.

Peach Milkshake – Recipe of the Month

Posted on May 17, 2017 by Melissa Young

This peach milkshake recipe has just a few ingredients and is perfect for sipping on summer nights. It would be a perfect treat for the Memorial Day weekend too. Who doesn’t like a milkshake!

I like to keep my blender right out on the counter so making a milkshake is an easy thing to do.

Ingredients

1 (15 ounce) can sliced peaches, drained
4 scoops vanilla ice cream
2 cups vanilla soy milk, or 1% milk
1/4 cup orange juice
Splash of vanilla
Dash of cinnamon

Instructions

In a blender, combine peaches, ice cream, soy milk and orange juice. Blend until smooth. Pour into glasses and top with whipped cream.

Enjoy!

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