Pay It Forward: Talking To People Newly Diagnosed With MS

People newly diagnosed with MS are understandably rattled. I try to pay it forward with compassion and by sharing the insight I've gained over the years. It's personally rewarding and hopefully helpful to them.

I met with someone this week that was recently diagnosed with MS. She’s justifiably having a hard time, and I’m glad she sought out the NMSS self-help group. She contacted me and attended our group meeting. We agreed to have lunch following the meeting, and at the end of our long lunch she hugged me and said she felt better. This was the best gift she could have given me.

I was diagnosed seven years ago, and I remember how lost I felt. In 2008 there were web resources, but not the volume and patient interactive groups that exist today. I scoured the local library and web for information, but I felt like anything that I related to was few and far between.  Now the advice online is overwhelming in volume and the range of advice contradictory. I think having someone to talk to one-on-one that understands and is experiencing the same illness is useful.  I hope to help others when they ask.

I’ve spoken with newly diagnosed people a few times now, and I think it’s been helpful that when I talk to them I try to:

·         Listen to them. Ask them about their experience so far. Leave it open. They’ll focus on what’s important to them.

·         Validate their experience. When a person shifts from pre-diagnosis to post-diagnosis, everything is viewed through a new lense. And every relationship they have with each family member and friend is going to change.

·         Offer personal experience in similar situations, but acknowledge that their experience may be different.  Know that what helped me may not be what will help them.

·         Acknowledge that each case of MS is unique and because of that, I think each experience is paradoxically normal. MS is very confusing with a wide range of symptoms. Some symptoms are vague, and others are glaringly affecting. But none follow the cause and effect explanation that an injury provides. A twisted ankle may hurt, and you can conclude it’s sprained. There’s not usually a triggering event that explains fatigue, blindness, numbness, constipation, paralysis, or pain. It can come and go with no way for us to understand how we can stop it or prevent it next time.

·         Each person is on a journey. Not all information is useful or able to be absorbed when everything is new and overwhelming. Pick the most frustrating issue for them, and plant a seed of solution or hope.

·         Ask them as they reflect now if they had symptoms that came and went in the past. They may still be in the midst of an exacerbation, and feeling terrible, depressed, and scared is normal while still having an exacerbation. Especially when an MS diagnosis has come out of the blue. It’s frustrating that no one can predict how long the exacerbation will last, but if symptoms came and went in the past I’d guess that they will subside. I’m 99% confident that this person will feel better again.

·         Assure the person that they don’t need to worry about forever right now. Give it three months to see if symptoms improve. And if symptoms don’t improve in three months, they can figure out what to do then. There's no need to worry now about what may not be a problem in the future.

·         Let them know that life can be better after MS diagnosis. Children can learn to be more compassionate and independent. Relationships can grow to a healthier dynamic. Being forced to deal with the limitations MS demands can also lead to living a life worth loving.  Gratitude for what still is can make for more joy in life.  

·         Offer to be available in the future to talk. They may or may not call. But sometimes just knowing someone would be there is enough.

As I compile this list, I recognize I strive to do these things and I may be better at it sometimes than others. We’re all human.  I’m not the person I strive to be all the time, but I’m getting closer each day.  I may have more to add to this list as I grow and learn more, but this is a good start. I’d love to hear suggestions!

The Lasting Love of a Long Gone Mother

My mother's senior photo with flowers I know she'd love

May 21, 1994 – The day our mother suddenly left this world and our lives changed completely.  We became four newly motherless daughters at the ages of 27, 23, 20 and only nine years old. I still feel cheated that we didn’t get more time with her, but I can feel her loss now without being consumed by pain or resentment.

For a long time I thought people had a hard time with death, but I’ve since realized that people were likely reacting to my raw pain when they changed the subject.  Fortunately it’s been some time since I became able to talk about her with joy and ease in conversation that no longer makes people want to flee.

The biggest change I made that helped me to feel less pain for her absence on holidays and birthdays was to create new traditions. I chose to write letters to my sisters commemorating the occasion and honoring our mother.  The first letters are a bit tough to read because I can see I was suffering even though I had hope. Putting my thoughts in writing and sharing them with my sisters allowed me to feel more connected to them. Suffering alone left me stuck, but reaching out to others honestly and with vulnerability led to a path beyond the grief.

I’ll hear songs or experience something and think about how I wish I could share them with her. She’s been gone 21 years this month, and there’s been so much in our lives she missed. The lessons she taught us by the life she lived and the stories she told still come to mind frequently. When she’s in my dreams, it’s lovely to interact with her in new conversations.  With changes and accomplishments my sisters and I have, I like to think about what our mom would have thought. I know she’d be extremely proud of each of us, and I’m proud of the person she was and the legacy she left.

A lesson I learned when my mother died is one I try to live by still – make sure each of my relationships is in a place I’m okay with if one of us is gone suddenly. It doesn’t mean all of them are happy, but at least there isn’t something I would regret if I never see them again.

My mother died in an airplane crash. There were no goodbyes or preparations for her absence. But my relationship with my mother was in a place where we loved each other, we had fun together, and we were honest with each other.  As a mother she created that relationship dynamic, and for that I’m immensely grateful she left me with our relationship in a good place.

Getting Through Uncertainty and Fear After Being Diagnosed With MS

I will feel good again, I will feel good again, I will feel good again.  It was the mantra I would say to myself that kept me going when I was filled with fear and uncertainty after my sudden MS diagnosis.

I’d felt good before, and I’d obviously had MS a long time by the time I was diagnosed. So I’d tell myself this new information and these symptoms would be temporary punches to the gut. I’d recover and feel good again. I had to replace the statement that I was saying to myself nonstop, “I have MS.” Can I still do this? Should I be doing something else to feel better, to improve my life span, and quality of life? I don’t know what to do, and I could be unintentionally doing something that’s making it worse.

In yoga or at the gym, I’d realize my self-talk was consumed with, “this is affecting me since I have MS. I can’t do this as well or at all because my nerves are damaged and balance is harder.” My body temperature rising makes me lose feeling in my feet or makes me clumsier. I wasn’t sure if these symptoms are normal, temporary, or making my MS worse.

I obsessed and was constantly thinking about how I had MS. Because I thought about it all the time, I assumed my friends or coworkers also saw my MS when they looked at me. It surprised me to learn from friends that they forget I have MS, because my MS was so, so prominent in my thoughts all the time. It was terrific feedback. I had intentionally tried not to talk about it all the time to keep it from becoming my identity, but it consumed me. I felt successful when I learned their perception of me was not overshadowed with MS.

Telling people what was a limit for me and what wasn’t was challenging. I felt like they didn’t trust me that I wouldn’t break, and I felt they didn’t believe me when I said I couldn’t do something. They saw me active and looking normal. Numb feet, tingling limbs, or just not feeling quite right aren’t visible.  There’s a fine line between being supportive and coming across as not believing it’s real and something I need to tend to differently. I can’t will myself through the symptoms. The body doesn’t care how much I want to do something. It only responds when I respect its limits and build capabilities to expand what I can do comfortably or with a consequence I can live with.

Along with the mantra of “I will feel good again,” I’d give myself a pep talk.  “I don’t know what I need to learn or think about differently to live with this, but it’ll happen.” It helped me to stay open to lessons, believing they’re around us all the time. I trusted that when I’m ready to learn the lesson I need, the opportunity will be there for me.

It was years before I one day realized I wasn’t internally thinking about my MS all the time. It takes the time it takes. It’s a loss that doesn’t go away. Once I was able to change the things I could and look at how this gave me permission to improve my life, it lessened the feeling of overwhelming loss for what I thought my future held. And it’s empowering to feel normal again. Different but normal.

MS Isn't A Battle To Me, It's Living

It’s interesting to me to see how often people describe people with chronic illnesses as struggling and battling the disease. They may be, but sometimes I think it's an assumption.  It’s not how I approach it. MS is like a family member or friend, my body buddy, that challenges me but isn’t fighting me. My approach is to coax the best out of myself and do what I can to keep the disease in check.  I’m not winning or losing, I’m living with it.

“When we resist change, it’s called suffering. But when we can completely let go and not struggle against it, when we can embrace the groundlessness of our situation and relax into its dynamic quality, that’s called enlightenment, or awakening to our true nature, to our fundamental goodness.”

- Pema Chödrön, "The Fundamental Ambiguity of Being Human"

I’m not suffering. I’m living and enjoying life. I experience health issues that affect my energy and mobility among other things. Sometimes it’s a challenge, and that’s just the nature of life.  We have tools in our life toolbox to deal with people, situations, and the body's aging process. Sometimes the tool I usually use doesn’t work in a new situation.  The challenge is then to learn a new tool, change my situation, or look at it differently to make peace with reality.

Choices I make have consequences in every aspect of my life.  Other people my age may be able to push themselves harder or longer, but learning to pause helps me get more out of life and experience fewer consequences that could lead to disease progression. I'm pushing and accepting limits to improve my quality of life. I expect to keep experiencing new symptoms and challenges, and my approach is to keep doing what I'm doing.

Here's to embracing the groundlessness of our situations, relaxing into them, and thriving!

Finding What I Seek

I like using the natural tendencies of my mind to shape how I experience life.  Lately I’ve been toying with the idea of intentionally planting metaphorical seeds in my mind for things that I could use in my life right now.

Consciously thinking of something can trigger our minds to later notice it more frequently.  It may not be more prevalent, it’s just that we’ll notice it as a pattern.  I learned about this Baader-Meinhof Phenomenon last year, and sure enough I saw it mentioned in two other places within 24 hours.

A woman doing her daily shopping at the boulangerie

Synchronicity, serendipity, happenstance. I love all these words and meanings, and I’m delighted when I experience them.  Whether it’s a cosmic coincidence or just the natural tendency of our brains doesn’t matter to me.   Once we learn something, we may start finding it everywhere. And once it’s in the brain, it can shape our experiences and attitudes dramatically.

Shaping my experience: My assignments for France

Earlier this year I asked two dear friends what type of souvenir they would like me to bring them from France. I expected them to say scarves or some other object. I was surprised when they asked for things that required no expenditure, and I hadn’t anticipated how much richer my travels would be for the requests. One asked for photographs of strong women. Another asked for photographs of a certain popular graffiti artist. Both assignments shaped how I viewed and experienced my surroundings during my trip, and I noticed details that made my visit all the more unique and delightful.

Three Women at the Centre Pompidou Museum

I didn’t get photographs of all the strong women I saw because I was either too embarrassed to ask or couldn’t pull out my camera in time to get the shot. But those moments still linger in my memory of the trip.  The woman in a fabulous skirted ensemble riding her bike through the bustling streets of Paris. She passed cars in gridlock with ease and a fluidity exuding confidence and beauty.  The three aged women in the Centre Pompidou museum enjoying a leisurely conversation and laughter filled evening out together. I only took a photograph of them from behind because I was too embarrassed to ask to take their photograph. Their wide smiles on lined and joy filled faces are missing from the photographs, but I still light up at the memory of them. Just as I perceived them, I’m looking forward to being an old woman enjoying life and making time for my relationships, art, and the evening breeze.  Now I realize how special it could have been to connect with them and expand the experience. It might not have been an interruption to them, rather an opportunity to make the evening even more special and memorable for all of us.

Graffiti in the alley outside our apartment on Rue Mouffetard

The graffiti of the artist my friend mentioned is typically small and hidden.  Like finding a gem in a lawn, it pushed me to look at my surroundings in detail. We looked at cracks in building foundations, and we studied unfamiliar road signs wondering if they were standard or artistically modified. I’m not sure if I found any of his artwork, but we found many beautiful, clever, and vibrant paintings everywhere. We looked, and we found.

The Do Not Enter signs are usually just a red circle
with a horizontal white line.
We found clever modified signs throughout Paris.

The residual effect of these travel assignments is that I continue to seek and find everyday beauty in graffiti and strong women.  I delight in the beauty of street art and human creativity. I’m inspired and empowered by the interesting women all around me.

Not always finding exactly what I seek, but loving what I find

Naturally, I don’t look for things I don’t think I’ll find. I like the idea of putting something in my scope of attention and believing the universe will provide.  Setting aside the judgment of whether I’m likely to find it or not, only focusing on my interest in seeing it.

I find coins on the ground a lot. I’ve found a lot over the years, and I continue to look even though I don’t think about it much. I didn’t see any change on the ground in France in almost three weeks. It made me curious if they have a different relationship to change than Americans where they don’t accidentally drop it as often as we do. Or perhaps the custom of leaving spare change for servers after meals doesn’t facilitate carrying as much change around. Do French men put change in their pockets or in a zippered wallet? Or does the fact that they have coins worth a dollar or more increase their carefulness with their money? This is one case of not finding what I looked for. It wasn’t something I need, and it prompted a curiosity in my thoughts and discussion with my sister about the possible reasons why the difference. I didn’t find what I originally sought; I found something that satisfied my search in an even more interesting and fulfilling way.

Intentional seeking

As I look at my vision boards from a couple years ago, it amazes me how many of the things pictured I’ve learned to do, have done, or have in my life now! These experiences urge me to be more proactive about how I view my day. I’m tired, maybe I’ll think about looking for energy around me. If I’m feeling low, I can think about seeking joy and beauty. It'll be interesting to see how it works!

Music Is My Happy Place

For #GivingTuesday today I donated to MusicandMemory.org.  Music is my happy place through challenging times, and I hope my small donation will help someone else experience their happy place again.

In early 2013, I watched the movie, “The Music Never Stopped,” with fascination about a man with a brain tumor that affects his memory. Through listening to the music of his youth, he’s able to remember and connect with his family. Beyond the story and fabulous characters, it's also a toe tapping flick with tons of Greatful Dead songs.  After savoring the movie I scrutinized the credits to learn the movie was based on Oliver Sacks’ story, "The Last Hippie."  Searching for other books by Oliver Sacks, I found and read Musicophilia: Tales of Music and the Brain. This book is thought-provoking for the anecdotes and studies showing just how powerful, quirky, and surprising our brains and abilities can be with our relationship to music.

                                                                                                                      
This past weekend I streamed Alive Inside on Netflix and was moved to tears again by the power of music on people’s lives. The documentary focuses on how the simple gift of an iPod with a playlist of music that’s meaningful to a person with dementia can transform their quality of life and allow them to connect with people around them.

In the United States we have 5 million people living with dementia and 10 million people caring for them. MusicandMemory.org is an organization that helps bring music to people living with dementia in nursing homes. May we all enjoy our own personal musical playlist for the full extent of our time on earth.

Getting The Most Out Of My Neurologist Visits

Data, data, data  With Multiple Sclerosis, the data I can track to see how I’m doing pretty much boils down to how I feel, what symptoms I experience, and what my MRI scans show. This requires ongoing tracking on my part to monitor my health and get the most out of my doctor visits.

The Neurologist Exam When I go to my neurologist and don’t have a new MRI scan done, the visit mostly consists of me telling the doctor how I’m doing.  Then he'll give what I laughingly think of as an expensive, doctor conducted sobriety test. He'll watch my eyes as they track his finger moving around, he'll watch me touch my finger to his finger and to my nose, back and forth. He'll check my walking gait, speed and balance skills by watching me walk in the hallway.  Forward away from him 20 feet quickly, turn around and walk toward him. Walk on my heels, on my toes, and along a line on the floor heel to toe.

For the exam he'll also poke and scratch me with a small stick to see what I can feel and whether it's a sharp or dull sensation. He'll check my reflexes, flexibility and strength in each limb.We’ll discuss any symptoms I’m having, and he can let me know which medications are on the market that may help alleviate symptoms.

MRI Scans I've learned from my neurologist that MRIs show lesions, and the MRI scans taken with a contrast will show active lesions as a brighter white. Over the course of years of scans, the neurologist will have a lot of scans that he can toggle between to compare lesions from years past and your most recent scan. He'll show you the technician's report and describe his own conclusions from looking at the information. Ask lots of questions if something doesn't make sense. Repeat what you think you understand from what he's said so that he can agree or correct you if you misunderstood.

Some people choose not to get the contrast, and it's a matter of personal preference.  It's important to know though that without the contrast you will not be able to tell if lesions are old or active.

My neurologist says that he's more interested in brain scans than the spine because they help indicate disease progression where symptoms aren't as readily felt or visible. I like to get scans of my spinal cord to show any activity. This information helps me compare how I’m feeling today and any symptoms since my last scan with proof of disease progression.   In the past I've had pretty normal looking brain scans and a spinal cord riddled with lesions.  I understand my doctor's perspective, but given fatigue is my biggest challenge and it’s such a vague symptom, the MRI scans give me feedback that helps me decide what symptoms were likely the result of having an exacerbation (aka flare up as a result of new damage) or just the consequences of old lesions.

MRI scans have been my best source of feedback to start trusting myself again with how I think I'm doing. They've also helped me relax more when I experience new symptoms since I've learned a sense of what is health issues as usual or something that needs immediate attention.

Prepare a list of my symptoms and questions to ask my neurologist.  I keep a health journal that came with my disease modifying drug.  It’s primarily provided in order to track my injection rotations and consistency.  I use it to track my sleep, exercise, weight, and any unusual symptoms.  I also enter alcohol consumption and certain foods that I think can contribute to me not feeling great.

It’s easy to get flustered or forget something I’d like to discuss at the doctor’s visit since time is limited and some discussion may derail my train of thought.  I make sure I have any questions I want to ask written down so I can make the most of my appointment.

I check my notes from my last visit and see what symptoms were discussed and what recommendations were made.  In my appointment I take lots of notes.  I've had a couple of providers in the past that seemed surprised or uneasy with my note taking, but once they got to know me they've all complimented me on my approach to my health.

Consult my support team and invite someone along. I let my inner circle know that I’m going to my semi-annual neurologist appointment so that they can be on standby in case I need to talk following the visit.  At times I will also seek their input prior to the appointment to see if they've noticed any symptoms or have any insight into how I’m doing. Their observations are always helpful and sometimes surprising!

I like to bring someone with me to my appointment so that I have someone to talk to afterwards that may have heard things differently or can reinforce what I heard.  Even taking notes, it’s a lot of information to absorb and it’s helpful to have someone else that heard the same conversation.  Especially if my friend concluded something different than I did, I can pursue it.

Having friends and family accompany me to my appointment is also a tremendous opportunity for bolstering my support system.  My hope is that it will help demystify my disease and how I’m doing.

After taking a good friend with me to an appointment she gave me feedback that she was surprised that I was so timid in the exam room.  She knows me as a person who takes care of myself and strongly advocates for my needs.  With some self-reflection I knew she was correct and my timid nature was in response to not wanting to be labeled a problem or difficult patient. This feedback helped me put my fears in perspective and encourage myself to think of self advocacy as just that, not being difficult or troublesome.

Reward yourself after the appointment.  Plan for and allow time after the appointment to nurture and reward yourself for being responsible and proactive about your health. I remember as a kid getting ice cream after going to the dentist and behaving well.  I think we never grow out of needing positive reinforcement. Self care takes a lot of effort and may not always be enough of its own reward.

My preparation list below is specific for a neurologist visit, but is good for annual checkups and other doctor visits too.

1. Write down a detailed list of any questions you have for the neurologist. Bring a journal to write down notes during the appointment. Repeat back to the doctor what you understand was said to confirm or correct your impressions.
2. Bring a list of all medications and supplements you take consistently and once in a while. Make sure to bring insurance card and pharmacy contact information.
3. Dress comfortably, and wear shoes you wear frequently.  When the neurologist checks your gait, you want to make sure he’s seeing you in your regular shoes.  He may also look at your shoes to see if wear is uneven.
4. Be prepared to say what symptoms you're experiencing, how long they last and whether they've increased or decreased.  Describe any concerns you have. Think about any possible explanations other than MS for these symptoms.
5. Know and be able to describe how you're doing with stress, exercise, and diet. Have there been any changes in your life?  
6. Bring a friend or family member who can help absorb information, be supportive and get an accurate understanding of how you're doing. Make sure you let this person know what you expect from them and how they can help.
7. Bring your personal calendar to help schedule the next neurologist appointment in six months.
8. Plan to do something after the appointment that is fun and personally nurturing.