Closer and Yet Still So Far

Next goal: more poetry

Looking Back

The Last Word

     I began this year with one goal: Write one poem a week for the entire year, using predetermined topics and genres, about different aspects of my life with this MesS, also called Multiple Sclerosis. I am not sure how seriously I can take these textbook examples of doggerel, but without further hesitation, here is the last.

So, now a year has come and gone.

This collection is almost done.

Poems for a year,

Giving me a clear

And sincere

Denouement.

-Josh Evitt, 2019-

Back And Forth

Spasticity

There are times when my nerves cannot function

In the correct manner. Muscles are ‘told’

To act in a way that is not controlled,

Flexing, contracting, a huge malfunction,

Causing, for me, a major dysfunction:

Spasticity! It strikes, and in its hold,

Bringing me much closer to the threshold

Of what I endure from this malfunction.

Spasticity hits unexpectedly.

Whether getting out of my bed, the van,

Or adjusting my feet in my wheelchair,

I can only observe, dejectedly

As my legs bounce,but I can use my plan

Physical therapy helped me prepare.

-Josh Evitt 2019-

Canto II: More Mockery

Once all of the pre meds have run their course,
It is time to begin this visit's true source:
Rituxan. Now, he waits for five hours
With his phone, he fights as boredom devours
5 The slowly dwindling hours of the day
With thoughts of the meds he’s met on the way.
Betaseron, with its odd injection
Schedule. It offers hope of correction.
The symptoms abate, and the falls decrease.
10 Happily, he had a four year surcease
Of symptoms while betaseron worked.
But, unbeknownst to him, a relapse lurked
Beneath the surface of his failing med
Taking him off of his feet, bound to bed
15 Betaseron’s time is now at an end.
It’s now copaxone’s turn to try and mend
This relapse with a daily injection,
And take MS to a new direction.
For three more years copaxone fight MS.
20 Soon, a greater relapse causes distress.
Losing a teaching job, driving, and sight
Copaxone’s failure left him in a blight
Of spirit, body, and his failing brain.
He knew then that he’d never teach again.
25 But then Tysabri arrived, and with it
Appeared an unexpected benefit:
He was able to walk without his cane!
Then he became a teacher once again.
It seemed that tysabri had halted the
30 Progression of MS through his body.
His life felt restored, and hope did return!
But yet there was still one lesson learn.
But for now, he exults in Tysabri,
Unaware of his future misery.
35 Fondly, he remembers the joy it brought,
In spite of it being with danger fraught.
Then, he remembers tecfidera’s rise
To save the day and its evil disguise.
Tecfidera’s relief went not too well,
40 Awakening the threat of PML.

Full Time PT

Physical Therapy

This MesS has taken so much from me.

I now must complete old tasks in new ways.

Hope for a little of what I have lost lies in physical therapy.

At the beginning, a difficult path is my only guarantee,

And, despite how much I try, my body still disobeys.

This MesS has taken so much from me.

Despite so much failure, I am starting to see

That this commitment is for life,not just a few days.

Hope for a little of what I have lost lies in physical therapy.

Falls used to require mere seconds for recovery. 

But, now what took minutes takes hours in a daze.

This MesS has taken so much from me.

I’ve gained some new skills, providing a new discovery:

Falling and recovery now have entered a new phase!

Hope for a little of what I have lost lies in physical therapy.

It hasn’t been easy, not a pleasant journey,

But learning has helped fight this malaise.

This MesS has taken so much from me.

Hope for a little of what I have lost lies in physical therapy.

-Josh Evitt 2019

Just Triceps Something New

Triceps

     The triceps really aren't that exciting. They're often overshadowed other muscles. Think of the stereotypical gym scene from a movie people: running, benching, flexing, and such. But, over the years, this MesS has shown me just how important this group is. From getting into my rollator's seat, to getting off of the commode, or getting out of bed, my arms are seemingly in a constant workout mode, and the group does the most are the triceps. So, here's a brief rundown of what I do on Mondays, Wednesdays, and Fridays: 2 sets of 10 reps for each arm using blue (8 lbs.) resistance band. 

     At first I didn't have any resistance bands and just used a simple, three pound hand weight. When my physical therapist showed me how to use resistance bands it went much more fluidly. The bands are what I use now and in addition to being lighter in weight, there are other bonuses as well. It's less stressful when I fall, being easier to pull myself to my feet. Getting from my rollator to the toilet is easier because there is less trembling as my triceps are better at helping me keep still. The best result, however, has to be from being able to cook. As a career fat guy, cooking being curbed due to my inability to use a knife was a real downer. But now I am seeing some ability coming back.

All in all, it's tough, frustrating, but possible!

I am such a 'spaz'.

     Spasticity: a spastic state or condition; especially muscular hypertonicity with increased tendon reflexes. (Merriam Webster Online)

     Before this MesS became a part of my life, the word, "Spastic," only made me think of a cartoon character, nerdy gamers, and amped up tweakers. But, that view changed with my diagnosis. Yes, I still get a laugh over spasticity, but it usually comes at my own expense. For example, when my calf muscles and shins get spastic while I am sitting, my legs will 'bounce'. My four year old usually tries to dance along with the bass-like thumping that my heels make as they're slammed against the floor. 

     It can also be annoying. I have had my legs freeze mid step, sending me to the floor. At times my hand will enter, what is commonly called, "The Claw." When the claw hits, it is most often when I am trying to write, type, or even grab a glass or can. The result is usually a writing sample of the proverbial 'chicken scratch', a sentence that needed to be retyped several times, or a dropped drink. But, the most annoying aspect of it comes at night, when I am tired and trying to sleep. My legs will jump from a laying down position almost to a karate-like pose, often kicking my wife or launching me off of the bed. 

     In looking into spasticity, I discovered a wonderful article from the National Multiple Sclerosis Society's magazine Momentum. This article is a wonderful source about spasticity. The author covers examples, treatments, medications, therapies that help, and presents it all in clear and easily understood manner. She [Elinor Nauen] took a lot of the fears and worries had about spasticity. Here is a link to the article published in the 2010 issue of Momentum. If you would wish to read more about spasticity, then follow this link. 

Get Your Head In The Game

Meditation

Mindfulness

Introspection

     We've all heard about meditation and it's benefits to this MesS. But, I never really understood it, even now that I have started trying it. At the beginning of this year I started seeing a psychologist to help we with some building anger issues that began to creep out. 

• Getting angry at the drop of a hat
• Swearing A LOT
• Catching myself saying the most hateful things

     So, at my wife's request, I began seeing a therapist and was introduced to the concept of, "Mindfulness." Yes, it pretty much is just guided meditation, but it is also really difficult to do with the end result being much more of a tolerable person. 

The steps which were presented to me are:

• Find a quiet place
• Focus on breathing
• Empty thoughts
• Eventually bring one's mind back to the present.

     This seemed all well and good until I tried it. I keep on spend the most time thinking, obsessively, about how much I've failed. I am going to keep at it, but not solo. I have created a playlist of just one song that repeats a few times. It's a song that is purely instrumental, calming. 

     I have also begun looking, my doctor's suggestion, at a website called Headspace. It's an interesting site, and if you're in my situation of wanting to practice 'mindfulness', then feel free to check it out.

Here is my 'mindfulness' song.

Bye-ceps

     Well, this past weekend was fun. Fun as in I slipped out of my shower chair, missed my handrail, and then sliced my toe open as my feet slid into the vent cover. But there was a silver lining to this embarrassing cloud. Beginning around December of last year, I noticed that my falls had become more frequent and more crippling. I began to accept that whenever I would fall that it'll now just take me anywhere from 2 - 3 hours to get back to my feet. Needless to say, apathy started to fester.

      But, after working with a really good physical therapist on developing a routine for falling, exercises to help bolster my wobbly legs, and ways to 're-wire' how my arms work, I have been able to improve my recovery time. A few weeks ago I had a leg-extension spasm, similar to the one that caused me to wreck my car, and fell out of my rollator's chair in the middle of the kitchen floor. I used my arms and pulled myself across the kitchen and into the dinning room. I was actually able to lift myself into a chair, I call it my 'fall chair', and rest until I could return to my feet and wall-walk back to my walker. Then, just a few days ago, I fell getting out of the shower. I tripped on my shower chair and gravity took over. But, I was able to crawl out of the bathroom to my bed and lift myself to my feet by 'climbing' up the bed. Then, today after my shower I was able to take a shower without needing to my usual routine:

1. Sit on shower chair
2. Move to toilet
3. Lift shower chair into shower
4. Reverse to exit shower

I was able to move my chair to the shower without stopping at the toilet and didn't need to use my chair to exit the bathroom! Physical therapy can help, and especially in this case: Biceps.

     I wanted to highlight biceps this time because mine are rather lacking. I use a walker in the house a large mobility scooter elsewhere. So, I have stopped needing my arms as much as I thought, but this year I am keeping up with my PT routine of working arms and I am noticing some improvements when I have to pull myself up to a sitting position or off of the floor. Here's the big secret: I don't do it every day. 

     Biceps fall on Mondays, Wednesdays, and Fridays. I only do two simple sets of ten reps on each arm. For weight, I started with a small, green resistance band, about 2 lbs. worth. Now I have begun using a tougher band, five lbs. resistance, and hope to eventually move to a 10 lb. weight. Who knows. 

Experiment: Gluten free?

     I have officially embarked on a new journey. I am trying a gluten free diet. At first, I was anxious about it. I really didn't want to give up a lot of the foods I like, have to buy only expensive, often severely so, foods, or adopt veganism. But, upon researching the topic, it turns out that most of what I feared to lose did not need to be avoided. Then there's beer-cue the exasperated, "Sigh." But, I've figured a way around that mountainous molehill: Vodka! Speaking of vodka, I've also started trying gluten free recipes that I've either used before, without caring whether or not they were gluten free, or discovered after looking into the topic.

Here's some reasons why I'm hoping it'll help my symptoms:

1. Multiple Sclerosis News Today
2. Verywell.com
   
3. Naturally Savvy

     So, here's my first choice: Leek and Potato Soup. It is from a wonderful web page All Recipes.
Here's the recipe (PDF)

Happy Birthday, Saoirse!

     This past Tuesday was my daughter's fourth birthday. She's never ceasing to surprise me. While looking over my shoulder as I perused my Spotify playlists, she began reading the titles: "What?" "This Means War," and, "Creature of the Wheel." Utterly flabbergasted, I played White Zombie's song, and she started headbanging to it! If there ever was a doubt, it's been settled. Between her loving Zombie (White and Rob) and her sister's love of anime, I'm either raising the cool goth kids or the crazy artsy kids. I'm happy either way. 😈
    On a more serious note, I also started more PT (Physical Therapy/Torture). Because it has been so long since I had been to therapy, I had to get evaluated, yet again, wait for approval from my insurance, and then begin. The main focus of this round will be transfer.
In the past month I have fallen A LOT. I really do not mind falling. It's the getting back to my feet that's painful. The therapist is going to help me develop a routine of prevention and tactics for returning to my feet. I am also looking into a possible wheelchair evaluation. IF I end up needing a full time wheelchair, then I want to use a manual one as long as can. I already have an electric scooter for longer 'walks', but I don't yet want to be in a "Hover Round Commercial."
     School also starts this week, and I will need as much energy as possible for Raelin's and Saoirse's orientation. So, as the heat increases for summer's last, gasping choke hold on me, I'm off to the AC. 😁

Well, I tried

"The best laid schemes o’ Mice an’ Men

Gang aft agley, 

An’ lea’e us nought but grief an’ pain,

For promis’d joy!"

-Robert Burns, "To a Mouse" (1785)

     This little excerpt from Bobbie Burns fairly adequately sums up how my week has been. I had planned so much and bit by bit, step by step, hobble by hobble, collapsed under me. Simply put, I'm too tired to type. See yinz next week.

Therapy. . . again

     So, I am getting ready to start physical therapy again. Yahoo, sort of, I get to deal with the pain, the aches, and the unknown. . . the whole 'shuh bang'. I've taken this week to plan out what exactly I want to do with physical therapy. When I first was in PT, my doctor set the goals for me, but the previous time the therapist asked me what my goals were, and I had none. I honestly thought, "How can I know what therapy I need? I'm the cripple." Then, after some research, I realized that I need to take a more active role in my PT. So, here's my set of goals for PT this time around.

• Work on, "Floor Transfer"
  When I fall, it is never a quick and easy rebound. If I am lucky enough to fall near a chair, couch, or my bed, then it'll only take a mere 15 minutes to get back to my feet. But, when I fall with only my walker nearby, I am at a loss of what steps I can take to get my steps back. On average, it takes me from 30 minutes to almost a full hour before I am back on my feet.
  
• Work on using a 'full walker'
  Right now, I use a rollator: a walker with four wheels, hand brakes, and a chair. My particular rollator also doubles as a transport chair. I have a lot of trouble, however, throwing my weight to lift my legs because the rollator's seat gets in the way.
  
• Develop a better way of 'walking'
  Right now, I am basically rambling through my trying to walk. I want to know if there's a better way to try and move.
  
• Explore using a manual wheelchair
  I have also started to think that, with my recent falls, driving with hand controls, and my scooter having such a big turning radius that it's difficult to use inside most buildings, I should look at moving into a manual wheelchair for shorter 'walks'

TIMBER!!!!!

     We've all fallen. From learning to walk as a baby, to learning to roller blade as a fat kid on a hockey team, to relearning how to walk with a rollator, I have had plenty of falls. Usually, as one matures, the frequency of falling lessens. But with this MesS, it's not the case. Living with MS for ten years now has taught me some valuable lessons about falling:

• Falling hurts.
  Plain and simple hitting the ground, a wall, or someone else is painful. I am lucky that I have yet to break any bones, but I have broken: laundry baskets, canes, a rollator, a toilet, and needed stitches. It all hurts.
  
• It'll happen again.
  Despite having an awesome MS doctor, access to good physical therapy, and walking aides, I have to accept that I'm going to fall again.
  
• It's not always MS.
  Yes, a few of my falls were the results of MS causing mayhem in my nervous system. But, there plenty of times in which I've fallen purely by a bad chance. Sometimes MS has noting to do with it.
  
• It doesn't always 'mean something'.
  Not all falls mean that my MS is getting worse or better. True, I tend to fall more as symptoms escalate, but a fall doesn't always mean it's getting worse, or better.

Some falls are worse than others.

     So, falling sucks. There really is no nice way to put it. From the V shaped scar on my forearm to the countless scars and knicks that 'decorate' my shins, evidence of falling is all over me.

But, even with a rollator I can still walk and manage to get back to my feet, but it takes patience, perseverance, and more patience. 😉

"The best laid plans . . ."

Once more unto the gym, dear friends, once more; Or grab some sweatpants and that cheesy bread!

     Well, I tried to make a commitment to get back to the gym this week. I had it all planned. I was going to resurrect my physical therapy (PT) routine, return to the gym for a chair yoga class, and share my results here, hoping to show someone that this is NOT a losing battle.  

 BUT other pans were already in play:

• Weather interfered with a project that my wife is doing which required piles of wood to be placed all over the carport, effectively keeping m scooter immobile.
• Weather also changed so drastically as to hamper my mobility. Basically, changing weather and pressure escalate my symptoms.
• Which made it too tiring to walk to the car
• And too tiring to go to the gym
• And causing me to have severe bladder leaking
• And making it difficult even to hold a fork/spoon/knife/sandwich/cup
• But I was able to adapt my plans from what I wanted to do into what I could do.
• I managed to do weight lifting exercises, using a 10 pound dumbbell.
• I still tried to keep eating better, which basically meant, "Stop eating junk."
• I was able to adapt some, but not all, of my leg exercises to a routine while seated in my rollator.

Hopefully, this plan will come to fruition by the end of the week.

But, here's a preview of what would've been posted:

• PT exercises for MS physical therapy:
  For a few weeks I had physical therapy at The Shepherd Center in Atlanta, GA. While there I learned a few exercises that PLANNED on starting back up this week: a routine of arm exercises and floor exercises that were adapted to my walker.
• Not all of these would be done every day
• Mon, Wed, Fri
• Tue, Thu
  The goal would be to be able to do all of them per day.
• End result: a weekly accountability with myself

• Possibly switching from weekly posts to semi-weekly (insert sarcastic, "Oooo" sound)