Sunday, September 10, 2023

Lifelong Learning

When the kids return to school, traffic patterns change and I may follow the school bus on my morning commute to work.  There are fewer tourists in my town and fewer colleagues away on vacation. Stores and ad campaigns feature school supplies and products useful for students going back to school. “Back to School” season is a terrific annual reminder that learning doesn’t end after finishing school. I consider how much lifelong learning I’ve done and hope to attempt, the possibilities grow, and I’m motivated to plan more. 

A lot of learning comes naturally.  Something breaks, and I search online for a video on how to fix it. A health issue flares up, and I search for information on causes, symptoms, and treatments. Books and documentaries are suggested, and I’m intrigued enough to check them out. A social media feed pops up with something that teaches me something I didn’t know.  This can be a lot of learning, and it can be enough.

Life circumstances often compete with life goals, and they can hold us back from dreaming big. Multiple Sclerosis affects my health and beliefs about what’s possible for me, and so does aging, work, responsibilities, and finances. Mini doses of learning keep things interesting, and they can remind us of the possibilities.   

What excites me? What’s holding me back? How may I learn more about it?  

Options for learning abound. Consider local or virtual workshops, classes, and training. Conversations with friends and internet searches can lead to fantastic opportunities.  Dream big and work backward for what steps can lead there. Small steps today can change the trajectory of life and lead to big achievements later.  

Learning, growing, connecting, and contributing are tremendous activities for fulfillment. Being able to do some things may not be possible as we envision them, yet learning about them can broaden our perspective on how we could incorporate them into our lives. Ultimately, learning is not about the information, it’s about how it changes us. It changes how we perceive, understand, and interact in life. The possibilities alone are exciting! 

Sunday, July 23, 2023

Traveling With Health Issues

My definition of travel has changed as my Multiple Sclerosis symptoms have progressed. Travel used to be trips that include overnight travel, and even one night away from home might not have qualified as “real” travel. Now travel includes going places for periods of time that disrupt my daily routines, and that means day trips solidly qualify. Travel includes going anywhere outside of my normal routine. It demands having health issues considered and accommodated to ensure I have fun, meet my body’s needs, and don’t stress too much.

Two adages help me plan for travel:

“If anything can go wrong, it will (and at the worst possible moment).” 
~Murphy’s First Law
“Wherever you go, there you are.” 
~Oliver’s Law of Location 

I see Murphy’s law as a comical yet accurate warning, not pessimism. Things rarely go exactly as planned.  It takes foresight, preparation and back up plans to help navigate glitches with less stress. I see Oliver’s Law of Location as a fact with corresponding guidance to bring what I need. If I don’t plan ahead, the routines and things that keep me well in daily life might not be wherever I am.

Historically, I’ve prepared for trips by detailing a fairly straightforward packing list of clothing, toiletries, documents, electronics and medications. I’d consider how many articles of clothing and footwear to bring, match apparel to the weather and planned activities, and bring travel sized grooming products.

What would get missed were the things I use off and on to manage MS symptoms.  Traveling always causes one or more of my MS symptoms to exacerbate, and I wasn’t always prepared with food, products and equipment I have throughout my home that help me keep symptoms in check.  

It’s easier at home to accommodate my needs and preferences. It flows, because I’ve spent a lot of time creating routines that work for me. At home, I have bananas in the kitchen, muscle tonic in the fridge, a yoga mat in the living room, supplements and medication in the medicine cabinet, and magnesium sprays, CBD lotions and body washes in the bathroom. Everything is where I need it. 

Planning trips and leaving a normal routine takes effort, and it takes even more preparation and organization with health issues to address. What really helps me prepare for travel is looking at what makes me anxious or unsettled and addressing them one by one.  

Questions: What do I worry about, and what stresses me out?

Answer: I worry that I won’t have what I need to do impromptu activities. I worry about being able to keep up with others and the itinerary. I worry about not having freedom to deviate from the schedule or get rest when I need it. I worry about symptoms getting out of check and not having the products I have at home to address them.  

My worries stem from my common and persistent MS symptoms of spasticity, constipation, and fatigue. Recognizing this and planning ahead helps reduce my anxiety about managing them away from home. 

Spasticity is the term for when the nervous system misfires signals to limbs causing spasms, tightness, achiness, and cramping. Spasticity causes pain, and I combine a lot of methods in daily life to keep it in check. Spasticity makes flying and driving long distances endurance events.  While these activities are not technically endurance sports, I contend MS makes them qualify. I’m pushing myself to stay in confined spaces and positions that cause pain and muscle spasms. 

It requires diligence with supplements, lotions, stretching, and hydration. I’ll increase my medication dosage for the day and stretch at every opportunity. I’ll do full body stretches at rest stops and in airport terminals. Stretching in a car or airplane seat is more difficult but not impossible. In confined spaces, I can massage my calves and forearms, point and flex my toes to stretch my calves, and do wrist and hand stretches to relieve pain in my forearms. I don’t like drawing attention to myself, and I try to be discreet.  That said, I think it helps remind others to tend to their own bodies.  I’ve noticed others in airport terminals waiting for a flight notice me, get up from their seats and do their own stretches.

Constipation is deemed to be embarrassing and a personal issue.  Let’s remember it’s a human issue, and lots of people with or without health issues experience it at one time or another. The more informed we are, the better able we are to treat it. When MS damages the central nervous system, it can cause bowel and bladder issues.  Stress, dehydration, and changes in diet and routine can all contribute to constipation. Travel often includes all of these things. 

Anticipating, monitoring and treating constipation early can really make a difference. Fruits and vegetables (with high marks for bananas and pears), magnesium supplements, stretching (torso twist is great), and staying hydrated help me a lot.  

Fatigue is a common MS symptom, and it challenges me in the best of circumstances. Travel typically increases exertion, engagement, decisions to make, and overall stress level. Building in rest breaks, hydrating, keeping up on medications and supplements, and including fitness activities help manage it as best as possible.  

I wish I was low maintenance, and I strive to keep vanity in check, but MS has made me high-maintenance. I console myself with saying that at least I’m doing the maintenance and not pushing it on other people. I get exhausted thinking about everything I do to address my MS and general health, and I don’t even do all I feel I should. Periodically, I remember that even if I can do it all, I don’t need to do it all alone. I can ask for things that will make my life easier.  People are highly receptive and willing to help. They’ll stock bananas so they’re ready for me. They’ll go for walks with me or make sure the schedule allows time for movement.  They don’t make me uncomfortable or act judgmental. They’ll ask if I need anything, help me, and provide gentle reminders to tend to my needs. 

I enjoy travel immensely, and I endure what it takes to make it happen. Travel will cause MS symptoms to rear up, and it is hard on my body. I’m able to travel, I enjoy it, and I know it makes my life better. I do what I can to minimize the challenges and accept the hassle, because I still can and it’s still worth it.

Monday, June 12, 2023

Summer Heat and Changing Goals

Each day, week, weekend, season, and year, I like to think about what my goals are. What will I want to accomplish?  When it’s over, will I have a sense of fulfillment for the choices I made and how I spent time?

Each season or time of year has a different set of inherent challenges that aging and Multiple Sclerosis make more challenging. Spring and autumn consistently trigger fatigue and body malfunctioning for me. I blame the weather changes and obligation surges. 

Summer brings nice weather that I look forward to and also dread. Summers spent chasing the sun and building a dark tan no longer appeal to me. Basking in the sun feels good for moments and not hours. Staying cool and protecting myself from the sun and heat have become the objective. I look back at photographs from gatherings in 90-degree weather, and I can clearly see how I’m fatigued and not thriving. My smile tries to mask the internal suffering I’m experiencing. When overheating wasn’t an issue for me, I didn’t understand why it was so troublesome for others. Now I get it.

With time and more experience with how MS affects my body, I can anticipate how heat will trigger symptoms that are pseudo exacerbations. It helps to recognize them as temporary, because anxiety and stress can raise body temperature and worsen the experience. Thankfully,  am now less fearful of the loss of feeling in my limbs and the debilitating fatigue that comes on. I am more interested in being proactive about planning for comfort and enjoyment. While pseudo exacerbation symptoms are temporary and not disease progression, they still aren’t fun and are worth trying to avoid. Symptoms are uncomfortable, physically and emotionally painful, and frustrating.

Solutions are highly individual. It’s all about setting myself up for success before it gets to be a problem. Because it’s not a gradual process of my internal body temperature getting warmer, planning ahead is crucial. It increases exponentially and is often too much before I can gracefully exit social interactions. I can go from feeling slightly uncomfortable to not okay and needing immediate change in a moment. It’s similar to hot flashes associated with menopause, but for me it differs for the duration and lingering symptoms. Fatigue hits hard and lasts. If I wait until I’m overheating to come up with a plan, it’s often too late. I’m not in my best decision-making mind at that point. Having options and pre-planned back up plans make it less stressful considering options, accommodating my needs and maintaining polite demeanor. 

Planned events require me to adjust to the environment and navigate social norms. How can I dress, use cooling accessories, influence the location to be in the shade, or limit time where I’ll be in direct sun? Can I do anything to reduce the potential that I’ll be at the mercy of temperatures that trigger my MS symptoms? Can I anticipate challenges and make sure people know I may need to move locations or leave early? Advance notice can help reduce the potential for surprising or offending people. 

Unscheduled days allow me to adjust my plans to my body’s needs and limitations. Do I have the flexibility to design my day to best accommodate my wishes and environmental circumstances? Can I reschedule some activities to another day? Will the weather be different tomorrow, later this week or next? Can I do things early morning or late evening when it’s naturally cooler? The bonus of choosing non-peak times for activities is there aren’t as many crowds. It can be more peaceful and less chaotic. The potential for sunburn is minimized, and I can rest mid-day without feeling lazy. Knowing I already went outside or will go out later in the day allows me let go of the feeling that I’m missing out.

I look forward to sunny, warm days, but I’ve come to relish overcast weather, light rain and breezes. They allow me to enjoy being outside without conscious planning to avoid triggering my MS symptoms. Ideal weather depends on my goals and how my body feels, and it changes moment to moment, day to day, and year to year. Trying to force my body to behave like it did when I didn’t have MS is a futile and frustrating endeavor. Aligning my plans and outdoor activities with my body’s needs leads to less stress and more fulfillment. While I have resistance to being a bother, usually someone else will express gratitude when I speak up. My issue may be medical, but the desire for comfort is universal.  

This summer, my goals are to design my schedule to align activities I want to do with the weather and my body’s preferences, be kind to myself, advocate for my needs, and enjoy all I can still do.  

Monday, May 8, 2023

Intentional Motivation

It’s hard to stay motivated to do everything that I think I should do to be healthy and live well with Multiple Sclerosis. It seems like the hope of living with fewer MS symptoms and potentially less disease progression should be enough motivation, but temptation, fatigue and a bit of resentment that I even have to deal with MS demotivate me. 

Demotivation can also come from unlikely sources. A few years ago, I saw a physical therapist for hip pain. I described my fitness routines that I’d done for years. It included a daily minimum stretching and activity quota, and I was proud of myself for always doing it. I was very flexible and fairly strong. My habits supported my fitness level. 

Accurately, the physical therapist told me I had plateaued with my exercises. I needed to do more strength training to address the hip pain and improve my fitness level.  I did the prescribed exercises until the pain subsided, but it was tough doing everything they suggested. I was discouraged that I wasn’t doing it all. Not only did I stop doing the prescribed exercises, I stopped doing my minimum daily fitness regimen.  

I took good information, and I mentally warped it into nonsense.  Because my previous minimum daily routines weren’t enough, I concluded they weren't worth doing. I justified that I was still active and exercising, I just wasn’t doing it every day.  

Put in writing, it’s obviously flawed and unhelpful logic. In my mind, it made sense.  In reality, I squandered good habits that were helping me.  After a few years without daily stretching, my flexibility and strength diminished. Things that used to be easy are painful. I recently reintroduced my daily minimum regimen as mandatory, and I’m seeing improvement. My flexibility and strength are increasing, and movements are less painful.  

Handwritten Motivation on blue background

Reflecting on this experience inspires me to be more intentional about what motivates me and what discourages me.  

Motivation that comes from excitement works better than fear.  I have more success working toward goals than trying to avoid potential consequences. I want to feel like I’m being rewarded, not punished. 

My resentful and fearful thought process is that I have to exercise so that I maintain my mobility as best as possible, because I have a sucky disease that mostly targets my spine and affects my legs and arms. If I don’t keep moving, I won’t be able to keep moving. 

My enthusiastic thought process is that I get to exercise and live in a body that can do things I enjoy. The better I treat my body, the better I’ll feel, the more I’ll be able to do, and the better odds I’ll have aging with MS. If I keep moving, I’m more likely to be able to keep moving. 

Both approaches are true, and both work. When my resentful mindset kicks in, I hope to notice it and not give up.  I want to remember how much my body has done for me and continues to do for me, and set a goal that excites me.  It doesn’t have to be a big goal, it just needs to be meaningful and encouraging. When motivation comes from an enthusiastic mindset, I’m eager to do what’s good for me, and I'm happier overall. It’s a win-win!

Tuesday, March 28, 2023

Multiple Sclerosis Generations: From Diagnose & Adios to DMT to Crowdsource

Generations offer connection with those before us, with us and after us.

When age groups are categorized by generations, it’s interesting to see how birth year and world events influence life circumstances and outlooks. In the United States of America, the generally accepted generations include the Lost Generation, the Greatest Generation, the Silent Generation, the Baby Boomer Generation, Generation X, Millennials, Generation Z and Gen Alpha.  It occurred to me that people with Multiple Sclerosis could also be considered as living in other various generations depending on how old we were at first symptoms and diagnosis, the year we were diagnosed, and the understanding of MS and available treatments during early adulthood.  

I look at these differences and similarities not to segregate us, but to assess my own health, see where it can help me with my own journey, and consider how I can pay it forward for others. I see people older and diagnosed before me as farther along the MS path. I might not follow the same path, and I likely have more health care options than they had.  That said, I can see where their path seemingly led and learn from them.

I created the chart below that aligns the standard generations with three pivotal advancements in MS diagnosis, treatment and patient connection. Please don’t tune out yet, I promise to explain what it meant for me. By looking at the orange No or green Yes, it shows whether people in that generation had certain advancements available to them at age 20.  I chose age 20 to reflect when symptoms may have been present. While everyone is unique and experiences MS differently, it was a reasonable age for this purpose. 

There are many interesting MS facts in the Timeline – The History of Multiple Sclerosis. The three years and corresponding advancements I chose to include are:
  • 1981, the year MRI scans became a tool to view images of MS lesions, 
  • 1993 when the first MS disease-modifying therapy (DMT) was approved for use, and 
  • 2010 when Facebook established the option to create groups and online support communities became more commonly accessible.   
The Lost, Greatest and Silent Generations had none of the three advancements available to them when they were 20 years old.  Likely they lived in the “diagnose and adios” days when doctors might have known they had MS and told them, but they didn’t have any treatments to help them manage their MS.   Whether adios referred to goodbye or “to God” (as in you’re in God’s hands and there’s nothing they can do) is semantics. Either way, you’re on your own, and the doctor has done what they can.  Even worse were those not told they had MS, because some doctors believed a patient knowing they had an incurable disease was worse than not knowing. 

The Lost and Greatest Generations could be thought of as the “Diagnose & Adios Generation” or just the “Adios Generation” if not told they had MS. The youngest of these two generations would have been nearing 60 by the time MRIs were available to identify their lesion locations, and perhaps some of them benefited from that technology.  

I have and have had friends in the Silent Generation age group who lived with MS for many years and experienced disability by the time they were in their 50s and DMTs became available. They told me of participating in the lottery for early DMTs.  It wasn’t until I did research that I more fully understood what that meant.  

I’d known about the ABC drugs, and here’s an overview for those who might not. The three ABC drugs (Avonex®, Betaseron®, and Copaxone®) were approved between 1993-1996.  They were the first medications to help reduce the frequency and number of exacerbations a person with MS has, thereby delaying disease progression for those able to access the medication and for whom they helped.  

The first disease modifying medication was approved in 1993, and there wasn’t enough supply for all who wanted it. An article from the New York Times described the situation.  

“A computer lottery will be used to distribute a limited supply of a newly approved drug for multiple sclerosis, angering and saddening patients who might be helped by the therapy.  

“The arrangement may leave four out of five of the eligible sufferers unable to obtain treatment when the drug goes on the market in October. Doctors and ethicists called that a reasonable compromise.”

My friend was one of the lucky ones to be selected in the lottery. She began Betaseron® treatment and had positive results.  Currently 81 years old, she is of the Silent Generation. Timing for the medication’s availability benefited her and many others, and the subsequent approval of Copaxone® in 1995 and Avonex® in 1996 changed the disease course and prognosis for generations of people with MS to come. She and her peers could be thought of as the first of the “DMT Generation.” 

From MSAA’s page “Who Gets Multiple Sclerosis,” “Most people with MS experience their first symptoms and are diagnosed between the ages of 15 and 50, although individuals of any age may be diagnosed with MS.” It’s possible people in the Baby Boomer Generation may have had DMDs available at diagnosis. Those in Generation X are more likely to have had ABC medications available at time of diagnosis than any generation prior.   Please note that by saying these medications were available, I’m not saying people with MS had insurance, could afford medications, their doctor prescribed them or they chose to take them. Issues surrounding access, affordability and effectiveness are a huge conversation beyond what I’ll mention in this post. 

Millennials are more likely to only know a time when DMDs were available, and Generation Z were born into a world with DMD existence.   

I was diagnosed with MS in 2008, and at that time the prevalence of online patient communities was scarce. Patients Like Me originally started for patients with ALS in 2004, and they added a group for people with Multiple Sclerosis in 2007. I found them in 2010, and it was a terrific venue for learning, interacting and not feeling alone. Facebook groups started in 2010, and since then many groups with a myriad of MS interests have been created. I’ve found them helpful as they increase opportunities for connection, information and mutual support.  

I used to look to my elders for insight.  Then I added peers similar in age to those I sought advice and support. Now I look to the youth as well. It seems to me it can be thought of as a “Crowdsource Generation,” where we share information, learn from each other, support and apply what make sense for us.  

I look forward to ongoing medical advancements to see what the next MS Generation might be. Hopefully someday there will be a “Cured of MS Generation” and ultimately a “Post MS Eradication Generation.” I have hope.

“Multiple Sclerosis Drug to Be Dispensed by Lottery” The New York Times, September 2, 1993, Section A, Page 15, 

“Who Gets Multiple Sclerosis.”, May 31, 2022, 

“PatientsLikeMe Update: May 2007.”, May 2007, 

“Timeline – The History of Multiple Sclerosis.”, Feb 18, 2016,

“A Brief History of Facebook, Its Major Milestones” by Christopher McFadden, Interesting Engineering, July 7, 2020, 

Tuesday, February 21, 2023

Cultivating Kinship On Social Media

An estimated 2.8 million people worldwide are living with Multiple Sclerosis, and some choose to use social media.  They share their experiences, and they allow us to see their vulnerability for the betterment of all. Social media can be cold and hurtful, yet it can bring us community and kinship. It’s an individual decision to participate or avoid it.  It’s scary and risky to put ourselves out there, and we need to support those who are willing to share.  


I’m grateful for individuals living and speaking their truth.  Some have been sharing for decades, and some are just starting. I’m heartened by commenters who support with compassion and scroll past when things don’t speak to them.  I’m inspired by so many who cheerlead and model respectful interactions with exceedingly tough topics. I hope we can hang on to the benefits of social media and lose the hurt it can cause.  We need to protect our vulnerable peers, and I hope we can do this with compassion.  We are better for the myriad of voices and experiences. Suffering alone is misery. Knowing we aren’t alone helps us get through the tough stuff. 


It’s tough with any community where individuals are going through a lot personally.  Some people deal with it by lashing out or blaming.  It can be hurtful even when unintentional. I can give lots of examples I’ve experienced and seen, but I’ll share one of my earlier experiences that I think shows how people who understand MS can feel anger toward people who are doing their best.  


Years ago, I agreed to be interviewed for the local newspaper.  The article focused on how I have MS, am open with my health and was doing well professionally. The headline said I wasn’t going to let MS stop me. A comment on the article said I was doing a disservice to all people in the MS Community. She explained her husband had MS and continued working long after he should have left the workforce. It caused her a lot of stress and frustration, because he wasn’t accepting his limitations.  That comment stung.  I hadn’t written the story. I was interviewed, the reporter interpreted what I said, and they presented it in a way that was intended to be complimentary.  I don’t fault them for that.  That said, I didn’t say MS wouldn’t stop me, and it took much more time and brain space than I’d like to admit to accept her comment wasn’t about me. I felt compassion for her situation, but it hurt having her anger directed at me.


At some point the newspaper removed the comment.  I’m not sure if it was a broad-brush removal of comments on old stories or specific to this comment, but I appreciate that it isn’t there anymore. 


This experience helped me to shift how I look at social media interactions. When receiving comments, I consider the following:

  • Are they disruptors pushing an agenda or are they genuinely trying to learn?
  • Can I show compassion for them while maintaining my own wellbeing?
  • What can I learn from them?
  • Is the comment about me or them?
  • Does the comment warrant a response? 
  • Sometimes a lack of a response is more effective than engaging. 
  • Remember comments can be deleted on some platforms.

When commenting on other people’s posts, I consider these questions and perspectives:

  • Does it apply to me?  Do I have anything useful to provide? 
  • Why do I feel compelled to react or comment? Am I being supportive?
  • Is my response about me or about their experience?
  • Am I staying on point for what they posted, and is it helpful? 
  • Remember each person has a different experience, and what’s true for one is not true for all.  

We all learn different lessons at different times. Things I needed to learn when I was newly diagnosed differ from what I need to learn today and what I’ll need to learn in the coming years.  I see newly diagnosed people expressing where they are in their health journey, and I try to meet them where they are.  Usually it’s just listening and validating their experience. 


Some comments can be aggressive, cruel and scary. Others can validate and lift us up. The more we engage respectfully and compassionately, the less scary the internet may become. Cultivating kinship and community helps us individually and collectively. The MS Community is 2.8 million people, and the number of people who care for or about us is exponentially larger. We can make a difference.



Sunday, February 19, 2023

Holding On & Letting Go

A dear friend of mine is nearing the end of her earthly life. I’m grieving her pending departure, and I’m immensely grateful to have known and loved her. 

As this year began, I intended to center myself with “Letting Go” as my theme for 2023. I envisioned letting go of belongings and beliefs that no longer serve me.  Things like clothes, knick-knacks, and the hurts some people have caused me.  I didn’t foresee letting go of people I love. 


I will cling tightly to her friendship, lessons she taught me, and memories of time together. I will fiercely hang on to her with complete support and love. I aim to experience this time fully in all its bittersweet glory.


I know this also includes letting her go and fully supporting her in letting go. I aim to respect, accept and advocate as she wishes. I don’t want to make it harder for her, and I’ll try to not make our interactions about losing her. I’ll attempt to couch my sadness with appreciation. She lived gorgeously and supportively, and she will continue to live on long after her passing in me and many, many others.


As I cherish and celebrate her, I’ll share she was among the first people I met with Multiple Sclerosis almost 15 years ago when I was newly diagnosed with MS. She was one of the people I needed to navigate my own health challenges.  She was a mentor, confidante and cheerleader.  In her I saw resiliency, humor, love and acknowledgment for how hard MS can be.  She gave me hope and a model to follow.


She was diagnosed prior to MS disease modifying medications. She volunteered and was selected for a lottery to use one of the first medications available in studies.  Today many people with MS live with fewer relapses and less disease progression due to people like my friend who took the chance. Each generation has a better prognosis due to the collective efforts of the generations before them.  


My friend spearheaded creation of the local MS Self-Help group where I met her.  I watched her lead meetings with compassion, share insight, suggest options, and facilitate conversations with grace to ensure all attendees had their needs met. Her patience is unyielding and truly inspirational.


Today, I live better for the wisdom she imparted and leadership she quietly and compassionately provided. I’m better for knowing her, and I hold tightly to all she means to me. She is securely and forever held in my heart and spirit.

Saturday, January 21, 2023

I’m Still a Rock Star…And Yet

Image of written script, "Still a Rock Star... and Yet..."

I wrote a blog post in 2014 
I Feel Like A Rock Star! where I described learning my Multiple Sclerosis lesions were all two or more years old. This led to me proclaiming I felt like a Rock Star. 

For many years I related to the song by Pink, “So What,” because I connected with the lyrics. I felt my body had let me down, yet I would prevail even though it felt like MS and my body were fighting me. The song felt like an anthem rebelling against my MS. 

“And you're a tool
So, so what?
I am a rock star
I got my rock moves
And I don't want you tonight”

Friday was a very long day with MRI scans in the morning and a neurologist appointment late afternoon. I awoke at 5:30 am and left home in the dark at 6:35 am. A ferry ride and congested freeway drive are part of the routine getting to the imaging facility and my neurologist’s office. An hour in the tube for the MRI scans was so much better than years past. I saw Alonzo again - a terrific technician and delightful person. He always adds good cheer and compassion.  The facility also updated the scan rooms to allow seeing a digitized underwater seascape. Watching yellow and blue fish and skate swim under water was more relaxing than looking at the inside of the imaging tube.  

Morning scans and a late afternoon neurologist appointment allow me to do it all in one day.  It’s a long day, but it’s worth it to do it all in one trip. 

Today’s scans show no evidence of disease activity (NEDO) for at least ten years now. This is beyond great news.

I’ll give this context. When I was diagnosed in summer of 2008, I read a statistic that the majority of people with MS will likely need assistance walking (with a cane, walker, crutches or wheelchair) within ten years of diagnosis.

A few years ago, there was a false alarm that I’d had more lesions.  One set of MRI scans had shadows that I was told could be an old relapse.  Later it was clear that they were scan shadows and not evidence of any lesions. It felt like riding a roller coaster of emotions and belief in how I’m doing based on imperfect medical test results. The relief was immense learning that the scans were off and I didn’t have new lesions. Old damage continues to frustrate me and cause increased MS symptoms. Yet NEDA is the best I can hope for, and I’m immensely grateful for this win. 

Disease modifying medications have greatly changed the prognosis for people with MS. I’ve been fortunate to have them available at diagnosis, and they’ve been effective for my disease course.  My first year of diagnosis, I had three relapses. They were so impactful, I began to forget what feeling well was like. 

This blog post is about me, but it’s also not about me. In the early 1990s, no medications that tempered the immune system attacks on myelin (the nerve coating eroded by MS) existed. In the early to mid-90’s, three existed. In 2008 when I was diagnosed, there were four.  As of this writing, there are at least 24 options. The number of medications is notable for the magnitude, and it would seem excessive.  The sad part is not every medication works for every person, and it’s trial and error finding what works for each person. It’s also important to note that the effectiveness varies for each medication, and risks associated with modulating an immune system carries other health risks. It’s a necessary evil.  

All of the medications are expensive beyond belief, but they are saving grace for those of us who need them.  I’ll refrain from repeating my thoughts on this issue here, but I have written about insurance denials and prescription coverage previously if you want to check them out. Short story, I’m doing well and have coverage.  Not all do, and it’s a mess. 

These are four posts I wrote about medical insurance, if you feel like heading down that rabbit hole: 
I’m hard pressed to leave this on a negative note, so if you want to read a post that’s a bit more empowering for tracking and navigating insurance billing to help with financial impact, check out 

I want to acknowledge and celebrate this personal milestone of ten years without new disease activity. This summer I’ll reach 15 years post MS diagnosis. When I was diagnosed, the prognosis for people with MS was 20% of people would be bedridden, 20% require a wheelchair or mobility aid, and 60% would be ambulatory.  Ambulatory is such a sanitized word to convey the threshold that people are able to walk 150 feet, walk one block, and climb one flight of stairs. The bar is low, and the ability to do these things is everything when on the cusp of not being able to meet them. The prognosis for 1/3 of all patients was that they would go through life without any persistent disability, and suffer only intermittent, transient episodes of symptoms.” These statistics are from the National Institute of Health.

“Intermittent, transient episodes of symptoms” minimizes the impact MS has on a person. Even with the best possible disease course and NEDA, my life still revolves around managing my health and symptoms. All of my friends and family are impacted at one point or another by my health. I look like a healthy person, I work full time, and I am very active. And I’m extremely lucky.  

This past year, I walk-jogged a marathon. At mile 18, I was physically unable to run anymore. I could still walk though.  I didn’t care about how fast my pace was, and I knew I could walk the rest of the course and still make the time limit required to get credit and earn the title of “Finisher.”

I am doing well. So far, I continue “to go through life without any persistent disability, and suffer only intermittent, transient episodes of symptoms.”

It might sound great, and it is. That said, MS symptoms are a hassle. While grateful I’m doing as well as I am, it’s not a cake walk. My sympathy for all who experience health issues that inhibit them from activities and a lifestyle they desire. 

This weekend as I process the results of my health scans and consider milestones and the health journey I’ve endured, I celebrate my good fortune and I acknowledge it’s not guaranteed for things to come.  I sympathize with those who are experiencing a more difficult health journey of any flavor, and I extend my well-wishes and effort to help.  

Bittersweet is an apt description for how I feel. I embrace feeling like a rock star with rebellion, pride and full knowledge that it’s not all within my control. I extend my heartfelt compassion for those vulnerable, not faring well, or living with challenging times.

I hope you find your inspiration to weather all you experience.  For me it’s still Pink’s song, “So What.”

"So, so what?
I'm still a rock star
I got my rock moves
And I don't need you
And guess what?
I'm having more fun
And now that we're done
I'm gonna show you tonight"

Much love and sincere well wishes for all.    

Sunday, January 15, 2023

Tracking Symptoms & Treatments with Compassion & Encouragement

With each new year, I think about what’s ahead, what I can control, and what will make the next 12 months fulfilling for me.  Instead of pushing myself to do more or be better, my approach this year for health management is to track what helps me manage my health with methods that are easy to use and visually informative. 

Knowing what my body needs is an ever-changing puzzle, and tracking provides clues for what could be the cause or remedy for things contributing to health challenges. Add aging and menopause to living with Multiple Sclerosis, and knowing how to best manage my changing body is not easy. 

Tracking helps reveal immediate issues and needs, and over time it divulges patterns and trajectories. It can show similarities and differences in my health condition over time, and it can indicate overall improvement or decline. 

Monitoring can be as detailed or general as each person likes, and it can ebb and flow over time. Periodically entering full details for how I’m doing in a moment is terrific for long term health status review.  Simple checklists and charts can provide reminders to do things. Over time, they can give clues to explain changes throughout a week or month. 

I like systems that easily fit into my habits and schedule instead of forcing me to make drastic changes. I will do things that help my health when I remember, and often a note, comment or routine is enough encouragement to make good choices. When my routine changes, it can completely derail good habits that keep me well.
I’ve often noticed when spasticity and leg pain increase, I’ll realize I’ve forgotten or neglected to do some or many of the treatments proven to help me manage spasticity. I may have run out of supplements or medication, missed my daily banana or stretching, or have just been dehydrated.  No one thing on a single day causes my MS symptoms, but missing one or more a few days in a row can really throw me off track.  

Without tracking, I don’t notice the correlation as readily. With tracking, I clearly see how frequently my biggest MS symptoms occur AND which good health measures I’ve done or haven’t done.  

I use both digital apps and a hard-bound journal to track my symptoms and treatments, and I like them both for different reasons. I’ll share examples for each method in this blog post.

MSAA has an app My MS Manager that is a terrific comprehensive tracking tool for monitoring MS symptoms, treatments, and well-being. I particularly like that the app is flexible and can be customized with items to track or receive reminders to do them. In the daily journal section under “Treatment Taken?” section, I added prescriptions and treatments that I know help me with the frequency desired and an option to set up reminders.  Items can be added from a standard list and custom items can be created. To track each item on a given day, I can easily click yes, no or not required for the question, “Did you take this treatment today?”

Seeing my individual symptoms and mood charted over long periods of time and being able to compare current and past data is invaluable.  Knowing I’ve experienced similar peaks and valleys helps me weather today’s challenges. Seeing what helped previously offers suggestions for what might help this time.  

I use the app My MS Manager to provide comprehensive tracking, and I use other apps for fitness and activity tracking as well. Syncing my watch and scale to other apps makes it easy to access data without added effort or time on my part. 
Technology is incredible these days, and apps are convenient. I always have my phone handy, so it’s a good option for a lot of my tracking.  

Yet I learned long ago there’s never one solution that will meet all my needs. I like pen and paper for its flexibility and visual reminders.  I use it to track and remind myself to do daily or weekly things that help me maintain my health. I use a nicely bound journal with blank dot grid pages.  This approach works great for me for symptoms that are helped by a long list of treatments.

By entering treatments and activities next to the symptoms I’m managing each day, I have a built-in visual to connect how I’m feeling, why I might be experiencing symptoms, and what I can try to feel better. I’m including an image below to show the format I’m using and is working well for me.  

Page from my journal showing tracking example
In this example for spasticity and leg pain in my extremities, I have a number of things that help reduce pain including stretching, movement, supplements, daily banana, a vinegar muscle tonic, staying hydrated and medication.  Tracking on the same page the symptom or challenge along with actions I can take helps me see easily what else might help or if I am already doing everything I know helps and it’s getting worse. It was clear to me that when my leg pain became excessive that I could get back on track with stretching, supplements and the vinegar muscle tonic. It’s getting better every day, and I can see that with my chart. 
Please know that MS symptoms can often be unpredictable and uncontrollable. Tracking doesn’t prevent relapses.  This may be obvious but it is important, so I’ll say it again:  

Tracking does not prevent relapses.

If you have a relapse, don’t blame yourself. If you know someone who has a relapse, don’t blame them. It’s easy to judge others and try to assign blame, but it doesn’t do anyone any good. We’re all doing the best we can with what we have and where we are at each point in our lives.  Take any Judgy McJudgy-Pants conclusions elsewhere. Okay, this side rant is over and we’ll get back to tracking health items. 
It helps me to look at tracking as a monitoring tool rather than a long list of things to do that can put more pressure on myself. I don’t need more pressure, stress or judgment, even if it’s from me. I need to know I’m trying, and I need to remember I’m doing the best I can. A tracking tool can remind me without requiring me to take action. I still get to choose what I will or won’t do in each moment. I aim to tend to myself with compassion and encouragement rather than judgment and harshness. I wish all this for you too.