Super Heroes

I am at home, sitting on the couch.  I've been snuggled up with my dog watching a favorite TV show and haven't gotten up for a while.  Gradually I become aware of stiffness creeping into my lower legs.  And as I flex my feet my toes spasm painfully.

When this happens it's usually because I've put pressure on a nerve in my foot that causes my toes to respond by splaying apart.  Counter pressure usually makes the muscles relax.  When that doesn't work, I grab my toes and force them back into a normal position.  It took a good 20 minutes to get things to settle down.  I wonder if I'm dehydrated but I know I need to move more.  

Functional exercise is a simple way to help keep neural pathways talking to muscles and enabling movement.  Replicating the motions needed to sit, stand or climb stairs, functional exercise can help keep and maintain mobility.  Perhaps it's better not to even call it exercise, since that word seems to be a real turn-off for a lot of people.  

Movement is what our bodies are built for.  Look at all the joints, tendons, bones and muscles that we're made of.  Something so articulated is designed to move.  

In the MS world there are people who seem to have overcome the challenges that decreased mobility brings.  Wholistically managing their self-care; the physical, emotional, social and psychological.  Often these folks credit exercise, movement and being active as helping them live their best life with MS.  And that's really what it's all about; staying engaged with life.

There's no one solution to living with a chronic neurological condition.  It's not just the medication your doctor prescribes.  We are more than just a container for pills or infusions.  How the day to day living is managed is a big part of having a good quality of life.

  

Bananas

I have been feeling kind of puny for the past several weeks. If I didn’t know better I’d swear I was having a relapse, but one that is combined with a cold or allergies.  Symptoms have included everything from new neuropathy in my toes to a runny nose, sneezing, fever and sore throat.  

I stocked up on cough drops, allergy medicine, cough medicine and even used my nasal rinse.  The humidifier was even taken down from the closet shelf.  Is it llergies?  A nasty cold?  The flu?  The battle continued until:

[BREAKING NEWS:  A trip to the ED in late February to be evaluated for pneumonia reveals ... COVID.]  

All this aside, now that I’ve graduated to SPMS, relapses are supposed to be a thing of the past. If a bona fide relapse does occur, SPMS is considered “active.”  However, with a SPMS relapse, full recovery isn’t likely. Only an MRI can confirm if new lesions are the cause behind new symptoms.  I think in general, once your neurologist has given you your SPMS badge, progression is assumed to be in your future.

So for this post, I am turning my attention to bananas. Because sometimes MS is just bananas and sometimes makes me feel so. 

Let’s be honest. You either have no bananas or too many. Once you buy a bunch they demand to be eaten or they ripen quickly and insist on being made into muffins.  Not just that, they inevitably ripen all at once and attract fruit flies. (Does anyone know where fruit flies come from?  Do they stowaway on unripened fruit and bide their time waiting for things to decay?).

I bought bananas just before Christmas Eve. I thought I was ordering a bunch of six.  But I misread the shopping app and ended up with six .....

So muffins were made. And they were so delicious I continued making them even after my accidental abundance was gone. I continued making banana muffins until the end of January when I ate a dozen in three days (I had added chocolate chips). Even my dog woofed in disgust as he watched me stuffing my mouth over the kitchen sink.

The moral of the story is, don’t let MS drive you bananas. Make some muffins; add some chocolate chips.

Dear Diary

 Finding joy in the day and developing resilience are skills that take practice.  It is very easy to become distracted by the weeds and sticks that can litter our path in life and totally miss the things that make us happy.

On a walk recently with my dog, it occurred to me that I am so much a part of the natural world around me that I "belong" simply because I exist.  I don't know what brought on this thought but as soon as I acknowledged it, I felt lighter and actually smiled a little.

Life with a chronic illness is a daily adventure into the unknown and the challenges that go hand in hand with daily living.  I handle the ups and downs a lot better when I remember to look for the things that I am grateful for and that bring me joy.

This past weekend was the annual Great Backyard Bird Count.  I have loved birds since I was in elementary school and I enjoy participating in this event.  Essentially you record birds that you observe and log them with one of two apps available or online.  It's a little citizen science to help track bird populations.

So, on my morning walk with my dog, I pulled out my app to record the bird sounds that I heard. Let me just say that birding by ear is a real thing and, thankfully so.  Binoculars are definitely standard equipment for birdwatching, but learning birdsongs is a great asset.

Returning home I reviewed my list and once I was certain of what I had heard I logged my sightings.  There are a lot of birds in my immediate area and living in the Pacific Flyway more or less ensures there are lots of species to observe.

This morning when I woke up, two mourning doves were greeting each other outside my apartment.  Mourning doves are a favorite of mine from when I was similarly greeted in the mornings in my childhood bedroom.

I took this picture in 2015.  I was lucky that year to get an up close look at nest building, hatching and fledging of the robin chicks.  I don't know if birds find joy in their songs but like this mama robin protecting her chicks from the rain, they are resilient.

Love Letter - February 2025

Dear Diary:

Winter where I live in Northern California includes spells of rainy days that change the way you approach daily life.  An umbrella and rain coat become regular companions.  A pair of boots may be a part of the mix.  Here on the western slope and into the valley, it can get cold, but rarely do we see snow.

As a former east coast native where winter brought not just cold, but snow and frigid temperatures, the weather here isn't that bad.  I've known a few gentlemen who go through the entire year here in cargo shorts!  

I think all my east coast winter resilience has probably been worn away by the (relatively) balmy California winters and baked off by the dry heat of our long summers.  After getting through all the holiday festivities and gatherings and back to my life as a single dog-parent, I do have what appears to be a cold.

I haven't been one to get sick much in my adulthood.  I have wondered if my overactive immune system had fortified me against most contagious illnesses.  A doctor once told me it is common to have more than one autoimmune disease.  In my case I have three that I know of, including MS. 

Or maybe, I've speculated, after having five kids, I have been exposed to enough child-borne bugs to make me invincible.  I've been sick so infrequently I can remember clearly when I was last sick enough to go through a box of tissues in a day (when I had COVID, a souvenir I brought home from vacation).

All this to say, having a cold or the flu adds another layer of self-care to my daily palliative approach to managing MS.  Becoming a pro at taking care of yourself is very important, whether or not you have MS.  My first neurologist responded to my request for guidance in disease management by saying, "... understand your needs and limitations."  That advice has guided me often, right as rain.

 

 

Sonic Salvation

 Dear Diary:

I moved a couple of months ago.  After multiple rounds of decluttering, I sold my home of 24 years to move into something smaller, without stairs to navigate.  I found a nice ground floor apartment with a generous patio and just the right amount of space for me and my small dog.

Unfortunately, the building is not well insulated between upstairs floor and lower level ceiling and any structural noise is at times very, very loud.  I don't hear conversations thankfully, just foot traffic and furniture.  This isn't a problem with the neighbors on either side of me.  I rarely hear anything from them.  But the upstairs apartment has no carpeting and I know exactly where everyone is at any given time.  When it gets to be bedtime for me, I think my upstairs neighbors are just starting their after work activities.

Chairs are moved in the dining room and dragged across the living room floor.  Their little one runs back and forth across the apartment, the bathroom door squeaks, a flushing toilet cascades through the wall at the head of my bed and laundry is started.  I'm in bed.  It's 9:30.... PM.

I've pulled out the heavy artillery over the past few weeks.  At the forefront is a device I received as a Christmas gift that produces calming lights and sounds that can be set up on an app.  I was already using an Alexa routine at bedtime but this new device is a bit of an upgrade.  The light feature functions as an alarm, gradually brightening in the morning.

Then comes my Spotify account, where I have diligently added the albums of artists who perform quiet, soothing music.  When things get raucous upstairs I create an oasis of favorites I can listen to.  

Sleep.  Is.  Imperative.  I cannot function without a good night's sleep.  End of story.

Speaking of stories, I have also found wonderful sleep stories on the Calm app.  My favorites are called "Extreme Sleeps," written by a woman adventurer named Phoebe Smith.  Each story is about her travels to an extreme location where she has camped, hence the name "Extreme Sleeps."    

My MS burdened CNS is totally dependent on getting enough sleep and if it becomes deficient it can take days to recover.  Most human beings are this way.  For me, clumsiness increases, spasticity is worse, cognitive deficits run amok and fatigue is persistent. I don't have the luxury of having someone else around to pick up the slack, so I have to manage my daily routine and be mindful of how I spend my energy.

Sound therapy is becoming my new weapon of choice to address the needs of my central nervous system.  I confess to having been a skeptic.  I'm already balancing delicately on the edges of adopting all the new technologies I need just to pay for a visit to my dogs' vet and you're asking me to take a leap of faith into what now ... a sound bath?  

Am I just showing my age?

Kidding aside, I am becoming a believer in the power of sound to realign my mood into a more positive direction.  Yes, that's me you see with mop in hand "dancing" through the task of cleaning my compact living space while my Spotify account rolls through my "Liked" song list.  

But it's not just music that can settle my nerves.  There are other sounds that I find soothing and when used at the right moment, really help me to slow down and relax.  

So there you have it.