Tag Archives: living with MS

MS Relapses: An Evolution of Perspective

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By Stacie Prada

Multiple sclerosis relapses are scary for the symptoms they bring, and they’re overwhelming for the individual prognosis. Sharing our history and perspectives on relapses can help each of us gauge how we’re similar and different. It can show us how we are at different locations on similar paths or how we’re not on the same path at all. Anticipating how long my path is, what I may encounter along the way and how quickly or slowly I’ll reach each phase helps me put today in perspective and plan for the future.

Years 1 through 5 after MS Diagnosis were full of relapses, and my primary goal was to not have a relapse.  Those years were full of stress, confusion and frustration. The amount of information to learn and apply was staggering. The reliance on doctors to provide testing and assessment of whether I was having a relapse or not made me feel helpless. My health journals overflow with information to help me make sense of my body. Each relapse felt like failure.

Year 5 – Monitoring MS Symptoms and Trying to Avoid Relapses
I started blogging, and my lessons learned became more accessible for me to find later. This one is a go-to resource that reminds me to pay attention to what my body needs while accommodating what life requires. 

Year 6 – I Feel Like a Rock Star!
I was declared “stable and in remission.” I reached a point of confidence where I felt like I could finally tell if I was having an exacerbation or not. I knew how terrible I felt when I was having a relapse, and I knew how well I could feel when I wasn’t. I’d learned my body enough to know which symptoms were normal for me. I could distinguish between when the intensity and duration was likely due to existing damage from previous relapses and when it was likely new active MS activity. 

Year 8 – When is it an MS Exacerbation?
I documented and shared my mental checklist for relapse self-diagnosis with examples. I still read it whenever I wonder if I’m having an exacerbation.

Year 10 – Relapse Management
People with MS do not have complete control over whether or not they have a relapse. If someday there is a determined cause, cure and 100% effective management regimen, then that might be possible. Until then, the only ways I think relapses can be managed are to tackle them when they happen, reflect on them after they happen to try to find any patterns or contributors that you might be able to control, incorporate what helps, avoid what doesn’t, and try to make the fear manageable when they do happen. This post includes 13 Guidelines to follow that serve me well daily, then and now.

Year 13, Present Day – Symptoms without relapses: I look back to achieving the highly sought-after status of stable and in remission at year six with fondness and appreciation for the feeling of success. I envy my naiveté thinking that without relapses I’d be safe from disease progression.

The truth is nerves with old lesions can function for a while and give out much later. Some nerve function can repair, but it can also decline causing symptoms to worsen long after the relapse that caused the lesion. 

The majority of people with MS start with relapsing-remitting MS. The statistic that about half of people with MS transition to Secondary-Progressive MS in ten years is based on a time when disease modifying medications didn’t exist. Since these medications are intended to reduce the frequency of relapses and delay disease progression, I’m hopeful I’ll stay in the RRMS phase or take much, much longer than ten years to enter the SPMS phase. Differentiating between what is possible, likely or probable is tough. There are no guarantees, nor are there inevitable outcomes. 

With or without relapses, MS is with me and will shape my future. What I can do is keep doing what I’m doing. Keep learning, monitoring, adapting, and factoring my health into my daily decisions and long-range plans. Appreciate the people on this journey with me, and make sure to have fun along the way. Take very good care, all.

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  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/

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What is this?

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By Doug Ankerman

Several months after I was bestowed with my MS diagnosis, I hit a rough patch.

My legs were weak and wobbly. My balance off-kilter. But the worst, was my vision.

My focus would go in and out. While bright lights turned me into a shriveling shrew.

Oncoming car headlights forced me to wear sunglasses at night. Not in tribute to 80’s pop-star Corey Hart, but because the glare was blinding.

(Yeah, I continued to drive because I was young, dumb, and bull-headed.)

What was I experiencing? A relapse? A flare? An exacerbation? Frankly I didn’t care what it was called—all I knew was that I was terrified.

My mind spun wildly. Was my condition here to stay? Was this my new life? Did Corey Hart have MS, too?

Lucky for me a three-day bender of IV steroids (and with it, the taste of sucking on an iron popsicle) helped put things back to normal. Well, as normal as MS could be.

Time passed. Relapse-free. But multiple sclerosis continued a slow, gradual nip and tuck at my faculties till doctors gave me the title of being “secondary-progressive.”

Which was fine. Whatever. It was just name to me. Some may think my outlook is trite but I believe when one has MS, you toughen up. You learn to deal with every situation. And take nothing for granted. You appreciate small victories. Cherish every moment. Live each day like crazy. Because when you have MS, you know how quickly things can change.

If you think you are experiencing a MS relapse, talk to your doctor first. But also remain calm. Breathe deep. And if you can avoid it, don’t wear sunglasses at night.

*Doug writes silly stuff about MS and other topics on his humor blog at myoddsock.com.

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Postpartum Relapses

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By Alene Dover

Did you know that you can be at an increased risk of a relapse after you deliver a baby?

This was the message that I heard as I was trying to fulfill my dream of becoming a mother.

It didn’t help that I was 40 years old at the time, and already felt that I had age stacked against me. Now, I had to add on the risk that MS could cause to my health postpartum.

I needed to understand and gather the facts.

Was this in fact true?

If so, was there anything that I could do to reduce my risk of a postpartum flare?

And once I had a confirmed pregnancy, this quest for the truth became deeply personal.

I started with my most trusted resources – my neurologist.

Not only is she highly trained and stays on top of all the latest research, but she also knows me and my body.

I was relieved when she said that the risk of a postpartum relapse had more to do with my risk of a relapse pre-pregnancy. If I was at a high risk of a flare before I got pregnant, then, yes, I could likely experience a flare after delivering my baby.

However, if my disease activity was stable for at least six months prior to conception, that was a valuable indicator that I wasn’t as likely to experience a postpartum flare.

This was further motivation for me to best manage my diagnosis of relapsing-remitting MS.

Thankfully, I have done a lot with diet and lifestyle to manage MS. As a result of this work and my doctor’s recommendations, I’ve had five years of stabilization. The odds were in my favor.

That said, I’m not a gambling girl.

What else could I do?

My neurologist shared that exclusive breastfeeding can further reduce my risk of a postpartum flare. Breastfeeding is a personal decision that each new mom can decide if it’s the right decision for her and her family, but certainly knowing this big perk that it offers is encouraging for us new moms in the MS community.

Beyond this valuable information from my neurologist, I also chose to prioritize three other factors that I attribute to helping me to managing MS. 

Vitamin D

During my initial bloodwork, my vitamin D levels were low, so I chose to supplement with the guidance of my doctor and get outside as much as possible during pregnancy.

Food

If I wasn’t motivated enough by the fact that my body was creating a new life, I was motivated to keep my body healthy so I could be an active mom once she arrives.

Stress

With all the preparations and anticipation, I had to be extremely intentional with managing stress. Stress doesn’t do our body – especially MS – any favors. So, gave myself grace during pregnancy, practiced yoga and mindful breathing.

If you’d like to follow along on my pregnancy journey, you can join me on Instagram at www.instagram.com/lesspharmmoretable or at www.lesspharmmoretable.com.

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Ask the Expert – MS Relapses

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Featuring Barry A. Hendin, MD
MSAA’s Chief Medical Officer

Question: How do you determine when a relapse is severe enough to be treated with IV steroids versus waiting to see if the relapse will go away on its own? Also, if a patient does not receive IV steroids, what other treatments or changes in lifestyle may be recommended for a less-severe relapse?

Answer: Clinicians vary widely in their threshold for using steroids for relapses… and patients vary widely in their desire to be treated with steroids for relapses. The most common use of steroids is for a relapse that interferes with function. For example, severe vertigo, weakness, or gait dysfunction are common symptoms that can greatly interfere with function.

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Community Views: How Changing My Diet Helped Me Feel Better

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Paying close attention to what you eat is important if you live with multiple sclerosis (MS). Although there is no special “MS diet,” the foods you eat can make a big difference in your overall health. Your diet may also affect your energy level and your bowel and bladder function.1

To learn more about how people with MS are working to improve their diet, we reached out to our Facebook community. We asked members, “Have you altered your diet? What has your experience been like?”

Keep in mind, of course, that everyone is different. There is no guarantee if you follow a particular diet, you will feel a certain way. These are just the experiences of 40 of our Facebook followers. Be sure to consult your doctor before making any major nutrition changes!

Sugar is out and fiber is in

A low-fat, high-fiber diet is important when you have MS. You should try to limit the amount of sugar and processed food you eat. And getting enough fluids is also important.1,2

“I hardly eat fried foods anymore. I bake or air fry now and I limit pasta dishes and rice. I cut out sugary soda pops. Lost weight and feel lighter. I try to take probiotics also. Helps with digestion. I eat lots of homemade soups and salad. My body likes that.”

“Clean eating. No artificial or inflammatory foods/ingredients. No gluten/dairy. So far, so good.”

Staying at the right weight makes sense

People who live with MS should try to maintain a healthy weight, recommends the National Multiple Sclerosis Society. Obesity may increase the risk of other health conditions that can worsen a person’s MS.2

“I lost 10 pounds by eating less meat and more vegetables.”

“I know there’s a lot of negativity towards Keto but that’s what worked for me. I lost over 60 pounds in the course of 2 years (walking daily as well) and I had very low inflammation. I got off of it for about 2 years and am starting again because I felt so much better on it. I also did organic and grass-fed meats and eggs.”

Pass up the meat and try a nut butter

People with MS should focus on lean sources of protein and healthy fats. Experts recommend limiting intake of animal-based fats. This means cutting back on butter, whole milk, and meat, but it does not mean a ban on delicious foods.3

Try out some different kinds of fish. And include some nut-based fat sources like olive oil, avocado oil, and peanut or almond butter in your meal plan. They are a rich source of healthful omega-3s.3

“No salt, dairy, beef, processed food or processed sugars.”

“I have eliminated dairy and 90 percent gluten. Those made the biggest difference in how I felt overall. I have generally stayed away from processed foods. A family member ranches, so we get amazing meat through them, but we don’t eat a lot of meat anymore.”

Eat a rainbow of fruits and vegetables

Experts recommend that people with MS increase their intake of fruits and vegetables.2,3

“I am limiting processed foods and processed carbs and my focus is on 3 to 5 servings of fruit and vegetables each day, and 2 should preferably be dark leafy vegetables. I eat blackberries, blueberries, strawberries, pistachios, and broccoli daily.”

“Vibrant fruits and veggies – as much color as I can get on my plate!”

“I eat a lot more fresh fruit and vegetables and more food that has no preservatives, is not fried, and is low in sodium and sugar. While I’m not 100 percent with this, I DEFINITELY feel a difference with the way I eat.”

Thank you to everyone who shared information about their experiences with multiple sclerosis and making changes in the diet. We appreciate your honesty and willingness to share.

References:

1. Diet and Nutrition. National Multiple Sclerosis Society. Available at https://www.nationalmssociety.org/Living-Well-With-MS/Diet-Exercise-Healthy-Behaviors/Diet-Nutrition?Accessed 8/2/2021.
2.Wellness for People with MS: What do we know about diet, exercise and mood and what do we still need to learn? National Multiple Sclerosis Society. Available at https://nmsscdn.azureedge.net/NationalMSSociety/media/MSNationalFiles/Brochures/WellnessMSSocietyforPeoplewMS.pdf. Accessed 8/2/2021.
3. Is there a multiple sclerosis diet? The Mayo Clinic. Available at https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/expert-answers/multiple-sclerosis-diet/faq-20057953. Accessed 8/2/2021.

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Identity, Humor, Intelligence, & Chronic Illness

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By Stacie Prada

Living with a chronic illness that progresses and has no cure has made me hyper aware of how I view myself and others. Faced with potential physical disability and cognitive decline, I realized how much of my identity was based on what I can do, say and accomplish.

I remember my early years navigating acknowledging I had multiple sclerosis. The long list of symptoms and conditions that can result from MS lesions is frightening. Cognitive changes scared me. They can affect a person professionally, compromise analytical and problem-solving skills, and end a career. They often change personal relationships, and I wondered if they would change how I interact with people. 

These scared me, and in that swirling jumble of symptoms, possibilities and impacts, I worried what it might mean for my personality.  I worried it would change how people see me and how I see myself. 

Would I lose my sense of humor and intelligence? Would my personality become something different? Would I like who I become?

Identity

It turns out I am becoming more serious and intentional, and I’m also keeping my quick-thoughts and silliness. MS integrated into my identity.  It didn’t displace it. MS is a big part of my life, but so are all of the other aspects of my being. 

I haven’t lost my sense of humor, but I have become clearer about why things make me laugh. Something I experience or observe may make me chuckle to myself, and whether I share it with the people around me depends on the situation and relationship. Anecdotes and observations on living with a chronic illness can ring true and boost connection with some, and they can make others uncomfortable. Sometimes a modification to how it’s told can make it relatable, and other times it’s worth waiting to share with a person who already understands.

Being silly can sometimes be seen as immature or flippant. Growing older, gaining confidence and learning every day helps me share my thoughts more and worry less about what people will think. If someone interprets me differently than I’d like, I’ve gotten better about not owning their opinion.

I’ve watched friends experience physical and cognitive impacts due to illness and aging. Searching for the right word to express their thoughts can take longer, but it’s also because the right word matters to them.

Intelligence is not the ability to retrieve a word or speak quickly. It’s understandable yet misguided to presume communication equals comprehension and intelligence. I’ve learned through the years and many friends that the ability to communicate or retrieve words have no relationship to a person’s intelligence or understanding of things.

When a person takes their time to find the word that accurately captures what they want to convey, I’m often rewarded with a perspective and insight I hadn’t anticipated. It encourages me to honor the person and the conversation by staying quiet, interested and unhurried.

Curiosity and not rushing a conversation are crucial. Not finishing a sentence when they’re searching for the word reaps rewards. I may think I know what they’re going to say, but often they surprise me with more depth, cleverness and humor than I’d anticipated.

If I could talk to the newly diagnosed me from 13 years ago, I would tell her this:
Living with chronic illness affects everything, but MS will integrate into your identity in a way that matches your personality. Your intelligence, humor and identity will evolve, but they will be what you make them. You’ll gain insight into a world that teaches you about others and yourself. The experience will make clear who you are and who you want to be in this life. Through all of it, you’ll still be you.

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old. 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/

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Funny, Not Funny

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By Lauren Kovacs

OK so there is nothing funny about a chronic illness. Injecting a little bit of humor can go along the way. Don’t force it.

Yeah, the fire breathing dragon on my path to a decent night’s sleep is not funny. His blow torch breath on my arm for hours kinda sucks. But, maybe he can get a part on Game of Thrones instead of being part of my nightly nerve pain.

So my right leg identifies as a tree log. A very heavy log. It is my Barbie Leg. The Floppy Fish Foot is a special added MS gift. 

If I can’t manually bend Barbie Leg, Floppy Fish Foot steps up and makes movement extra hard. It gives 110%. It really knows how to increase the difficulty.

I left many things behind when my boys became teens. Not so much in reality. I load my van for a trip with as much stuff as when my boys were little. Only now my bed rail has replaced the pack and play. My wheelchair replaced the stroller and protein powder pushed out the baby food.

Ah, to be young again. Wait… my special fork replaced baby spoons and my water bottle with a straw replaced sippy cups. At least I am accustomed to needing lots of stuff.

Try and find a wee bit of humor in things. Not everything is funny though. I spend many moments in frustration tears. Take something you deal with and turn it around. The back of my thighs are starting to burn a bit.  Nothing big or painful yet. Getting ready to turn that around with humor.

Yes, my right leg is spastic, but I turned it into something silly. I can laugh most of the time. Plus I am finding people understand a Barbie leg better then spasticity. Make your descriptions as simple as possible for everyone. Your silly analogies can clarify things for people.

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5 Years of Camaraderie and Community

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Living with a chronic condition — such as multiple sclerosis — can feel isolating at times, particularly during a pandemic. Especially in this last year and half, we have all learned the value of connection with other people. One way that people affected by MS have managed to connect and create a sense of community for the last five years is through MSAA’s online peer forum, My MSAA Community.

My MSAA Community is a free, online peer-to-peer forum for members to share their MS experiences. The community is a safe space that allows users to post a question and get answers from members of the forum, share their MS journey, connect with others, and contribute to ongoing conversations.

For the past five years, members of the MS community have come to this online forum looking for advice and connection from someone living a similar experience. With more than 6,500 members and more than 16,000 posts, you can find:

  • Coping strategies for difficult MS symptoms
  • Tips on how to talk to your healthcare team
  • Discussion about different therapy options
  • Support for some of the more challenging aspects of living with MS
  • Fun stories, and more

Join My MSAA Community and help us celebrate five years of camaraderie and connection for people affected by multiple sclerosis.

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Day Trip Outings

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By Stacie Prada

Living with MS can lead a person to avoid doing things outside of the routine. Dealing with unpredictability can make a person avoid additional inconveniences and uncertainty.

When my gut reaction is to think something is too much effort, it’s good for me to think about why I’m resisting. There might be a good reason for resistance, but knowing the cause is helpful. If it’s rooted in avoidance or fear, I want to challenge myself to identify what I can do that would offset the what ifs. 

What if it’s not worth the effort? What if I go somewhere and my MS symptoms rear up? What if I need something and I don’t have it or I can’t get it?

Living well with MS requires knowing yourself well, respecting and adapting to health needs, and planning ahead. All of these life skills are well-suited to successful and enjoyable outings, and doing new things can add excitement and fulfillment to any life. Day trip outings are perfect for experiencing the joy of travel while keeping the comfort of sleeping at home. 

You do you. If you don’t want to go somewhere or do something, don’t!  But if you want to do some day trips and are feeling resistant, consider this:

  1. Perpetual planning allows spontaneity to thrive. Many barriers can be accommodated with creativity, preparation and a willingness to explore alternatives. Over prepare and expect things won’t go perfectly as planned. 
  2. Pack a day bag with personalized essentials to ease stress. The day bag should include anything that will provide comfort and options. I like to include water, snacks, medication, bath tissue, sunscreen, jacket, hat, extra shoes and socks. Think about everything that could be in the car to make it feel like any circumstance or change of plans could be accommodated.
  3. Set reasonable expectations. Overestimate travel time, and grant yourself permission to change plans.
  4. Focus the trip around one anchor focus or goal for the day. Create a mental or written list of other things that can be done, if plans change and energy and time allow. Back up plans help diffuse disappointment when things don’t go as intended. Schedule plenty of extra time to do more or less in order to take good care for yourself. Delays and unexpected changes of plans can sometimes lead to wonderful opportunities.
  5. Allow for lots of bathroom breaks, and never pass a restroom assuming another one will be available later. It’s better to go too often than to not have access to one when it’s needed.
  6. Make the travel experience as fulfilling as the destination. Go with someone you want to spend time with. Have a good playlist, podcasts or book on tape ready to play. Consider why you’re going. If it’s a trip to a view point, there might be clouds obscuring the view when you get there. Enjoy the journey, the people and doing something out of the routine. 
  7. Look for surprises, and be open to exploring them. Allow for impromptu diversions. Rainbows, herds of elk and skydivers landing have all been rewarding unplanned sights I’ve enjoyed because I looked beyond the road and was willing to turn off the planned drive.
  8. Use technology, but don’t get overwhelmed. Look online or use apps for recommendations in the area, and consider them. I love using navigation apps for simplifying the directions and letting me know the time and distance to my destination. 
  9. Talk to people. Locals always know the best places, and they love sharing special tips that you might otherwise miss. Just connecting with people can be fulfilling too!
  10. Interrupting someone is required when pointing out something nearby or of interest that won’t be visible a few moments later. 
  11. There’s always time for ice cream. Literally or figuratively, indulge and enjoy the trip!
Elk on a day trip

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  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/

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Community Views: Advice I Would Have Given Myself at Diagnosis

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Advice for MS diagnosis

Multiple sclerosis (MS) often feels overwhelming at the time of diagnosis. Feeling powerless may be your first reaction. Yet, as you live with MS, you find strength and coping strategies.

Everyone needs tools for the journey. We recently asked the Facebook community, “If you could go back to the day of your diagnosis, what advice would you give your younger self?” We have compiled some of the shared wisdom below.

Get a second opinion

One important tip you shared was to see an MS specialist for your care. While your primary care physician (PCP) is a good starting resource, having someone who specializes in MS is vital. Specialists will be current on the latest research and are your best asset for managing the disease.1

“Get a second opinion with a doctor that specializes in MS right away.”

“I was referred and told it would be a 6-month wait by a doctor I respect. I turned out to be 9 months and worth the wait.”

Mental Health

Being diagnosed with MS can have a significant impact on your mental health. Having a chronic illness creates all sorts of turmoil as life and abilities change. Caring for your mental health at the outset of the disease helps you manage long-term.

“Depression has been harder for me than the MS! Get a good therapist and investigate the meds.”

“Mental health is just as important as physical!”

Treatment

The community also shared the importance of developing a treatment plan with your doctor from the start. Getting MS into remission and keeping it there involves making a plan and staying consistent with it.

“Get on treatment and STAY on treatment.”

“Start on relapsing-remitting drugs as soon as possible.”

“When you go into remission, be sure to keep taking your medication even if you feel fine.”

Move your body

Getting regular exercise helps manage MS symptoms. Gentle exercise can improve strength, mood, bowel and bladder function, and bone density.2 Many of you shared what a difference regular movement makes with this disease.

“Do the yoga, do it now and keep doing it.”

“Stay as active as you possibly can. Keep your muscles in shape.”

“Walk while you still can.”

Lifestyle changes

Living with MS involves adapting your lifestyle to accommodate the changes. Some of you prioritize your “bucket list” in the early years of having more stamina. You also learn to slow down and listen to your body to avoid exacerbations.

“Eat right. Stay hydrated. Stay away from stress.”

“Don’t try to get everything done before getting too fatigued.”

“Do whatever you dream of now because you might not be able to do so later on.”

“Be willing to adapt. Your future husband will NOT fold towels the way you do – and that’s okay, he’s trying to help.”

Keep living

One of the most crucial things you shared was focusing on enjoying life. Life does not end with an MS diagnosis. It will change, many days will be hard, and yet, as you reminded us, “Your disease doesn’t and never will define you!!”

“Stop worrying about what MIGHT happen and focus on the good in life.”

“Don’t assume you will follow the path of someone else; everyone is different.”

“It will be OK. OK may just look different, but it will still be OK.”

“You are still you and always will be. This is just a detour in your life’s journey. It is NOT the end of the road, but rather the beginning of a new one.”

References:

1. Cavallo M. Neurologists and Specialists of MS. MS Focus Magazine. Available at https://www.msfocusmagazine.org/Magazine/Magazine-Items/Posted/Neurologist-and-Specialists-of-MS. Accessed 5/25/2021.
2. Exercise. National Multiple Sclerosis Society. Available at https://www.nationalmssociety.org/Living-Well-With-MS/Diet-Exercise-Healthy-Behaviors/Exercise. Accessed 5/25/2021.

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