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-

"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

Munga

"Munga," was a term of endearment for both of my grandmothers. I'm not sure how it came into being, but it has stuck for over 30 years. 

     This past week I missed a posting. . . for all 1 of my followers. ;) I live in NE Georgia, but attended a funeral in my hometown of East Butler, PA. My dad's mom passed away. It wasn't sudden, or unexpected, but it was saddening. So, I took a week off to pen a tribute to Munga.

     She was born in 1920. She hailed from Mt. Carmel, Illinois and moved to western PA with her husband. She worked in a hospital until her retirement and cared for two children: my dad and my aunt. Of all of my grandparents, my memories with her are the most extensive. From vacations in Ocean City, MD to walks through downtown, we did a lot together. 

     But, the most memorable thing about munga was her fostering a love of books in me. Every visit at her house, crammed with decor and memorabilia from the 40s, 50s, and 60s, was also accompanied with a myriad of books. I remember some; I've read others. But, the biggest impact from this event had to have been the trip to the funeral: across five states and two drastically different climates. Luckily, my mother in law, who stays with us and is a full time truck driver, was here to help drive. She drove the entire trip. 12+hours one way. On this trip, I also learned some very important lessons:

• Don't be afraid to ask for help. 

• Don't think, "I won't need to stop and use a restroom. I can hold it."

• Don't drink too much caffeine.

• Do enjoy the drive.

• Do take time to notice things.

• Do get some chipped ham when in Pittsburgh. 😁

• Don't be worried about how MS is going to ruin your plans.

• Don't let the MonSter take control.

• Do take time to catch up with old friends.

• Do remember the good times.

Most Importantly:

Pack enough underwear. 😁😁😁

Keep/Quit Fighting/Trying

Any combination works with those words.

     Despite living with this MesS for ten years, I still get surprised by events, symptoms, good news, and bad news.

Memory or, "Now, where was I?"
     Now, we all have had lapses in memory. Everyone goes through moments in which you lose your keys, or forget where you parked, or misplaced, "That one thing." I have had those moments as well. Yet with MS, not only are they more frequent, but also they're more severe. I don't just misplace keys; I lose them in my pockets. I don't just forget names, but I forget faces. It's still disturbing to see someone that I know but don't remember that I know. However, I am good at waiting in a conversation long enough to catch the name I'm missing.

Reading between the lines has taken a whole new meaning.
     Since high school I loved reading. I used to be able to read chapters at night and read assigned texts for class. In college I discovered even more authors, ideas, and styles. I fondly remember enjoying reading. Now, however, I'm lucky if I get through a chapter in a week. It's mainly due to my memory, but also to my inability to process properly. I don't like reading anymore mainly because it's a constant reminder of what I've lost and a gloomy prediction of what I will lose. But, I still refuse to quit entirely. I've had to read other blogs and articles in preparing for this. It just takes me longer, and often it takes me more than one try to read AND understand something.

Walking: heh. . . Walking
     It all started with a cane. Then that cane evolved into a rollator. The rollator is soon looking to become a walker. I know  wheelchair is on the horizon, but I need to win the lottery first so I can afford one. My mobility scooter still does well, and on the plus side, walking uses my arms so much that it's basically an upper body workout just to go 15 feet.

Who Thinks Like This??

About Me

Well, if you haven't yet figured it out: my name's Josh. I currently live in the northeastern corner of Georgia and have lived here since about 2002 (full time) and part time from 1998 through 2002, i.e., my college education. In 2003 I began teaching high school and married my high school sweetheart. In 2006, our first child was born, and in 2007 things changed. I was diagnosed with multiple sclerosis. In 2010 my teaching career ended, and by 2012 I was listed as, "Disabled." But, I never really liked that word, even before it was applied to me. So, I prefer to call myself a mandated retiree. In these few years, I've gone through, and put my family through, so much that I decided to share what has happened for two purposes. First, I want to vent my frustrations with this disease safely and quietly. Second, I miss being in a position to help people, and I hope to benefit, at least, one other person (even if it's only to chuckle at some cheesey stories). I cannot guarantee that you'll like, dislike, or even care about reading this, but I can guarantee that it'll be honest. So, with all that out of the way, I'll begin this blog officially by explaining the title: Daddy's On The Floor!
     I had thought that I had adjusted to my life as a 'mandated retiree'. I was still able to handle some things like changing my youngest's diapers, putting her down for a nap, and the like. But as she grew older, taller, and more adventerous, it became more and more difficult to keep up with her, and she knew it. 
     One afternoon, as I had just used my walker to get her into her crib for a nap, two disastrous things happened: my daughter woke up too early, and I fell. Now, those who are parents will understand the horrors of a baby not getting enough sleep at nap time. For those who do not know that experience, I'll just say that it's awful. Normally, I would have gone over to her and either sung (as badly as I can) or recited a poem (her favorite is Cædmon's Hymn) to lull her back to sleep. In this case, however, I was unable to move for my walker had rolled in the opposite direction that I had fallen, and my phone was also launched out of my reach. Seeing that I was not coming to comfort her, my daughter decided to attempt to climb out of her crib, screaming her frustrations at me each time I said, "No! Stay in bed," while trying to sound authoritative but looking like a turtle that's been rolled onto its back. Finally, after almost making it to my feet, and getting within an arm's reach of my walker, I fell again with an echoing, "THUD." 
     When I saw my daughter's redoubled efforts to escape her crib, I panicked and decided to try comedy. I looked at her, smiled, and said, "OH NOOO! Daddy's on the floor!" I altered my voice to add a comical sound to it and crossed my eyes, which to this day still makes her laugh. She was so entertained by my constant repetition that we were able to sit there for about 45 minutes, laughing and saying, "Daddy's on the floor!" until my wife got home from work, rescued our daughter from her crib, and helped me get back to my feet.