The Second and Eleventh

When I was first diagnosed, there really were only four available medicines for MS: Avonex, Bestaseron, Copaxone, and Rebif. At that time, I was terrified of needles, so I chose the one with the smallest gauge of needle. Looking back, after all the blood tests, IV infusions, and such, I cannot comprehend being scared of needles. So, here is my second sonnet. It's a note about my experiences with Betaseron.

Sonnet 2

The Injections Begin

My first choice was for the Beta-1B:

To be injected every other day.

The smallest gauge of needles set my way.

Stories of success make this step easy:

Injections are light, side-effects breezy.

With needles all set, I enter the fray,

Shots go smoothly, and the symptoms-away.

But depression grins at me savagely.

The depression subsides  with some good pills.

The first MRIs are now clean and clear.

I begin to think that all will be well.

The years go by, with some goods and some ills.

But then, an event comes which causes fear:

New problems, and my recovery fell.¹

-2010-

     Now, I get the chance to share my next attempt at creation with you. It was bad enough dealing with the accident that took me out of the driver's seat for a while. 
Sonnet 12: Accident
A wreck took me out of the driver's seat.
Months later I had to re-learn to drive.
But, I drove again; I had not been beat!
I felt like I was once again alive!

My driving skills have begun to revive 
The desire to regain what had passed:
A yearning to do more than just survive.
But a second wreck would leave me aghast.

My van has been restored to me at last.
My driving has now been fully restored.
Even though this wreck is now in the past,
Lessons from this wreck cannot be ignored.

Occasionally, the sky will turn grey.
I can't let myself to sink into dismay.
-04/29/2017

^{1. This poem is NOT an accusation or accolade of how Betaseron (interferon beta-1b) functions. It is merely an account of my own interactions with it. MS is so random that it is impossible to predict whether or not a medication will work. I am NOT against Betaseron.↩}

To those who know me, this is no surprise.

     Poetry can be boring, intimidating, enjoyable, silly, inspiring, or even maddening. To this former English teacher, poetry is my favorite form of catharsis when dealing with multiple sclerosis. At the time of my diagnosis, I took to poetry to help me vent my frustrations with what would become this MesS. Even now, when I start to feel my symptoms raise their ugly heads, I will take the moment to write about it in verse. 
     What follows are some of my past creations, a brief description, and then a new addition. At times I might share a poem, or some lines, by another author, but unless otherwise expressed, these poems are my own, original creations.

Sonnet 1: The signs arrive

It all began with such a simple pain:

The hurt, the ache, and the gait would subside.

The idea of a pinched nerve turned the tide.

A surgeon proved that suspicion mundane.

The signs and feelings were now all made plain.

A constant doom will now, with me, reside,

With a lack of feelings did I collide,

Followed by thoughts that my life will wane.

The idea of a life fully shaded,

Stuck with needles and MRIs galore,

Hobbling and stumbling in a drunken daze.

There were times when I felt somewhat jaded.

A life of joy, I could expect no more.

I was doomed to walk through life in this haze.

-2007-

     I wrote this sonnet as the first in a series that I've begun about this MesS. This was the introduction to how I felt at the time MS wad suspected, then later confirmed. 

     This sonnet came to me with the recent release of a new drug Ocrevus(Ocrelizumab). Until now there was no medicine that had been proven to help with primary progressive multiple sclerosis (PPMS). The release of this new medicine was a game changer on so many levels.

Sonnet 11 Ocrevus Arrives
I have tried so many medications.
Only working adequately, short term,
Falling short of meeting most expectations,
And leaving me in a state more infirm.

The fear of, "Progressive," is in my mind.
A wheelchair will approach me rapidly,
Only as a cripple I'll be defined.
I think how my life will pass vapidly.

Then, on the horizon, a new hope appears,
Carrying news of promise, good results
That begin to relieve some of my fears.
With a less grim future, my heart exults.

Reality returns me to the ground
Stating that a cure is yet to be found.
-04/25/2017-

It is NOT tropical.

     Depression is never a pleasant topic to discuss. Sure, there are movies and cartoons that actually do a good job at taking depressing sounding characters and letting us laugh at them. From Droopy to Charlie Brown, we have all laughed at sad, yet silly, characters. But with this MesS, depression fills a much more serious, draining, and sometimes painful role. From sad mood swings, to changes in appetite, to a general disinterest, depression can raise its head. There are generally two ways that depression arrives with MS: as an actual symptom caused by an imbalance in the neurological system or as a result of other symptoms. In my case, it is the latter. 
     I am: 38, disabled, barely able to walk, and plagued by randomly embarrassing episodes of bladder incontinence, to name just a few. But in dealing with these issues, I have also discovered some rather adequate means to help me cope with depression. Here they are:
📌Medicine:
Since medication for depression is such a volatile issue, I am  NOT going to laud one over another. Rather, I simply implore you to do as I have done: See your doctor; be honest with how you feel; and follow the medicine's instructions. I also would like to address what I initially thought was clear mark against any antidepressants. I would always wonder how can a medicine, designed to combat depression lead to thoughts of suicide? Then, it happened to me. I started going into 'dark places', and it terrified me! I am so glad that I had the guts to mention this to my doctor, and he explained to me that the danger which I experienced stemmed from an antidepressant not working properly. My energy was elevated, my mobility increased, but my thought process was not properly adjusted. Hence, I had all the dark thoughts running through my brain and elevated energy to act on those thoughts. My medicine was changed with a much better result.
💡Realization(s): 
Depression is NOT a sign of weakness.
It is rough to predict as all of its facets are not always consistent. There a lot of commonalities, but not all are exactly alike.
📖Suggestions:
Sometimes isolation can be good. 
Sometimes socialization can be good.
Coffee helps me A LOT.

Depression comes with MS just as much as it can come from MS.

But, like many other sides of this MesS, while it might not be completely avoidable, it can be managed. (see blow)

Other links about Depression and Multiple Sclerosis

1. The MSSAA
2. The National MS Society

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)

"And now for something completely different and new..."

Ocrelizumab/Ocrevus

     There was big, earth shaking news in the world of MS: Ocrevus, or Ocrelizumab, has been cleared by the FDA as treatment for relapsing, remitting multiple sclerosis (RRMS) 

AND primary progressive multiple sclerosis (PPMS). 

Why is this such big news?

• When I was diagnosed with MS in 2007, I was told that as long I was only in RRMS that there was medicine available to help me.
• However, if I should progress into PPMS, then the only help available to me would be steroids or physical and occupational therapy. PPMS was the 'event horizon'.
• Now, there is a glimmer of hope beyond what I expected.

Will I take Ocrevus?

• I am not sure, yet.
• I am not unhappy with Rituxan.
• I want to make sure that I have gone progressive.

     When I was diagnosed, there were four recognized medicines for MS: Avonex, Betaseron, Copaxone, and Tysabri. I remember my MS doctor saying that there would be more to come, but I thought maybe I'd see one new medicine in my lifetime. I've already seen many new medicines arrive. I'm sure that there'll be more as well, but I keep hoping for the day when I won't need any.

For more info:

Shepherd Center's News

National MS Society