New Year Resolution(s)

     I remember when I foolishly began this blog that I had two noble goals:
👉Vent my frustrations with this disease safely and quietly
👉I hope to benefit, at least, one other person

     However, I am not sure that I was able to do either of those. While looking over my past entries, along with their accompanying Twitter notes, I have reached a conclusion. I am not a good blog writer, but there really is only one way to get better: keep at it! So, as the song goes, "Second verse, same as the first: a little bit louder and a little bit worse."

     So, I've recommitted myself to doing this blog thing better. I've been reading other blogs and I've noticed three commonalities:

     Purpose: the more popular ones that I've seen have an explicitly seen goal. They have a reason to be.-After thinking on this, I decided to re-state my purpose for this blog. Rather than simply allowing myself a place to vent and hoping to benefit 'others', I am going to focus on listing, researching, and offer help on problems which I have faced, or still am facing with this MesS.

     Structure: they are highly and creatively organized, using polls, articles, references, and sharing endorsements from other writers.-When I started this blog, I really had no structure whatsoever. I thought it would be amusing to make it as sporadic as MS. Little did I know how frustrating that would become. So, in short, it's been 'fixed'.

     Demeanor: generally speaking the 'popular' blogs are very optimistic. They're not always 'happy', but even in the most troubling stories that I have seen is an air of hope.-This is going to be the most difficult change for me to make. I am a pessimist. I do not see the glass as either half empty or half full. I see it as containing poison. I am stating here that I am going to try to sound better, not idiotically happy, but also not as despondent as I am wont to be. I am not going to exult in my problems just as much as I am not going to wallow in them.

So, with all of that said, please allow me to wish you a happy new year!

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)

Good Monday Morning, well what's so good about it?

     I just got some interesting news today. In less than a month I'm headed to the Shepherd Center for a wheelchair evaluation. I'm not sure how this will proceed, but I am excitedly pensive. I have been watching my walking going downhill for a while. Things like: walking, moving rapidly if I'm falling, easily getting in and out of bed, moving from my walker to a chair, and even getting to the toilet in time are getting more and more difficult.
     I've been told that this might be avoidable, but I also understand the randomly sporadic¹ nature of this disease.  I'm not sure how much I really want a wheelchair, but with each day I am beginning to see how I might need one.
     I'm not looking at this optimistically or pessimistically. Rather, I see this as, in the words of Monty Python, "Something completely different." I've been using a mobility scooter for a few years now, and I like how it's given me access to so many things I once had to quit. I'm not sure how this will progress, but I'll enter the fray hobbling as best as I can.

¹Multiple sclerosis is not only sporadic in what symptoms may appear, but also random as in regards to how severe, difficult, or debilitating they can be. Yes, it sounds redundant, but there's no other way that I can find that adequately describes this MesS.

Happy Monday oh wait it's Tuesday. . . Ugh😈

Weekend was fun:
Still blistering hot for October, even in Georgia, on Monday. Tuesday has been MUCH better.
Had a good time at the Greenville Swamp Rabbits game, even though they lost.
Best part: Barley's Taproom after the game!
I'm still looking for, and sometimes finding, the silver lining on this cloudy MesS.

Renaissance

     Well, it's been a while, but I've mustered the energy to try to start this again. I figured that I should get back into this. But, about what should I write? I could discuss life hacks for MS, resources for  medicines, or try to find to find something inspirational in my life with this MesS, but all of these present me with a dilemma: my life just isn't that interesting. So, I've decided on, as I thought about this failed blog over that last two months, that I am simply going to write pursuant to my 2017 resolution and not plan ahead. I have been following one other blog, and there is no way I could ever conceive of writing that well.

End Of "Hermiterbination."

     Well today marks the weekend of 'Spring Cleaning '. Yeah, I know Spring is over, but in my world NOW is the time to begin ending my hermiterbination. The weather is about to be better, school's back, and soon it'll been time for more Rituxan! I cannot wait for this summer to end.
     Saturday was rough, though. My wife started and will finish her project of making new bunk beds for Raelin and Saoirse. She's awesome, but at the same time I cannot help but to feel worse. My wife is busting her self on a construction project, and I can barely make it to the restroom to avoid messing myself like two year old baby. Every time I hear the saw, drill, or hammer it constantly resonates in my head, "LOSER!" But, then again I also have done the dishes, am getting  ready to prep the four year old for bed, and then maybe I can figure out how best to mop the kitchen floor. Is it cool, fun, or entertaining? NO! But it is something. I am still trying, succeeding, and, of course, failing. But at least I am doing something.
     So, what next? There a few options that I see. First, I can quit this blog, saving myself some anxiety. Second, I can implement an attempt to increase how often I post here, thinking that people actually read it. 😀 Lastly, I can change nothing and enjoy the stagnation. I guess my end result will become apparent within the coming few days. Blogging is A LOT more exhausting than I expected.
     I've also caught myself thinking about returning to work. I've looked at several types of stay at home jobs: call service, tutoring, and others. I am just not sure if I have the ability to stick with a schedule. I think I am going to try, but I just don't know if I want it badly enough to force myself to do it.
     But, I still hold to my motto: the only true optimist is the pessimist. I really do no longer hope for the best, but rather, I expect the worst. My expectations not being met is my goal. :)
     On a lighter note, football is just around the corner, and my Steelers are looking good.
   

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. 😁

TIMBER!!

We've all heard the question, "If a tree falls in the woods and no one is around to hear it, then does it really make a sound?"

     Well, while I am not sure about trees and their sounds, I am fairly certain that when I fall it does make a sound, in fact, several. Here's a brief rundown of what happened when I fell just a few days ago, described by the 'sounds' that were heard. 

• First, there is the creaking whine of my hand brakes on my rollator as I try, desperately and in vain, to halt my movement just long enough to regain my balance.
• Second, comes the hissing sound of the locked wheels of my rollator as it revolts and continues to slide across the linoleum floor, taking me to my, "Event horizon."
• Then comes the barrage of, sometimes R-rated, words shouted as the realization hits me: I'm falling.
• Next, there is the resounding, "Thud!" My body hits the floor and I try to convince everyone that, "I'm OK."
• Finally, there comes a little, "Thump, thump thump," of a three year old hoping that mommy's home, followed by a revelation: "Daddy's on the floor!"

     I do not think that I would have minded falling as much, if I had only managed to fall nearer to a couch, or a chair, or even a bed low enough to allow me some leverage to regain my feet. Rather, I fell in the middle of the kitchen: slippery floors, smooth walls, and no furniture. Four hours later, I was back on my feet. Well, it wasn't just four hours of me simply trying to stand. It was four hours of: grunting, cursing, praying, bargaining, shouting, more cursing, and one embarrassingly vulgar twitter rant. But, I did make it to my feet, 'counter walked' to my rollator, and promptly took a nap. 

Insights I gained from this fall:

• I need to be patient. If I hadn't been in such a hurry to get to the kitchen, to get to my scooter, to get to my van so I could go to my chair yoga class, then I probably wouldn't have lost my balance.
• I need to take things one step at a time. Look at the above list. 
• I need to do a better job cleaning the kitchen floor. Being face down on an old linoleum floor really opens one's eyes. 😏

     So, I'm back on my, well back to using my walker until I fall again, which probably will inspire me to visit the seating clinic at Shepherd. 

Until then, adieu.

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.

Ugh heat. . .

So, went to Helen GA last night for some beer and GOOD wings. Only 45 min drive, but through the mountains, and catching it today. Take care, working on something better next week. On the fun side, though, here's a reflection:
Am I suffering today? YES!
Are my mental processed messed up? DEFINITELY!
Am I tired like hammered [expletive]? YOU BET!
Would I ever do this again? DUHH OF COURSE!!!

Do not let this MesS run your life.

Fireworks, Beer, Burgers, and FREEDOM!!

     Well, the fourth of July is approaching, and as is usual in the south, I hear fireworks going off from all over my neighborhood. Am I going to participate? Probably not, rather I am going to sit in my air conditioning and chill. Will I go to some fireworks? I might, if there are still any planned. But on the whole, I prefer to remain cool, well, cool as in temperature. I was always a nerd. 😀
     But, in dealing with the festivities around the United States' birthday, here are my 'hacks' for staying cool:
➤Pay attention to the weather. If you need to cool off, then do so.

➤Enjoy some patriotic beer, just drink responsibly.

➤Don't try to be too macho. If you gotta go, then go.

➤Be safe around: sparklers, fireworks, and other 'explosives'.

Happy 4th of July!

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'

Socially UNacceptable

     Society and social are two words that have changed meanings for me over my years in dealing with this dictionary-altering disease. While I never was a people person, even as a child, I did not shun going out and about as much as I do now. Before, I could easily stop what I was doing, get in the car, and go meet someone for coffee, or lunch, or even a trip to a book store. 
     But now, the basic steps that I have to take to be able to go somewhere have changed. I get out of bed, rest, get showered, rest, get dressed, rest, use the bathroom, rest, walk out to the kitchen, rest, get to the door, rest, get in my scooter, rest, etc. Do you see the pattern? 😀
     Now, take that pattern and place it in a public scenario: a church, a grocery store, a coffee shop, or public pool. Social events became such an effort that, at one time, I avoided anything. Yet, there are some steps that I've developed to help me be more socially capable without messing myself, dropping food, saying the completely wrong thing, or worse. ALL of which I've done at the aforementioned places.

Steps I've Developed

💦I do not drink a lot until I am familiar with the place, where the restrooms are located, and how to get into them.

🔥I pay attention to the weather. If the forecast for the day is above 90°, then I do not leave the house unless where I am going has air conditioning AND my vehicle's been pre-cooling.

🏃I don't waste time. When I need to use the restroom, I do not say to myself, "I can wait." That used to be possible, but no longer. Trust me, getting up, walker/scooter included, and moving across a crowded room is FAR less embarrassing than losing one's bladder at church.

🙊I plan my speaking carefully. While it's not common for this MesS to impact speech in the same manner as strokes or other injuries do, MS can alter one's speech. I find that being aware of the possibility helps me keep my focus on saying what I mean to say.

     Of course, I could always just take up the life of a recluse, but that's never worked for anyone other than millionaires or poets. I am far being a millionaire, and I am closer to being a poetaster. 😅

Just Beat It!

     As with many others who have to deal with this MesS, summer can be hell on earth-mainly due to the heat. From icy drinks, to cooling vests, to homemade cold immersion therapy, there are a few ways to beat the heat. Sometimes all that it takes is quick rest in the shade, and others will take a day of inactivity in the air conditioning. So, here's a brief listing of the life-hacks I've found that help me with summer's inferno.

• Cold Coffee: In the morning, yes a good, fresh, hot cup of coffee can really wake me up, and I am SEVERELY ADDICTED to caffeine. But, as the day progresses and the temperature escalates, the heat of the coffee outweighs the benefits of the caffeine. Luckily, many restaurants have developed the drink: Cold coffee. It's even easier to make at home. Just brew some coffee and add ice.
  
• Cold Immersion Therapy [Homemade]: Real cold immersion therapy is something that must be pursued with a doctor's or other medical professional's advice. My version is a little less intense. First, take a normal shower. Second, as the shower ends, slowly lower the water's temperature to as cold as you can stand, Finally, once rested, get out and get dressed feeling more energized.
  
• Sleep: Sometimes, when the AC is running full blast, a cat nap helps.

These are just a few of the ways I try to keep cool. Follow the links below and find even more.

National MS Society

MSAA

So, What's Happening?

     Well, a few events have arisen that required me to take some extra time to contemplate, and Cog-fog did not make it easy.

• My latest MRI was good: no new lesions or activity on current ones.
• I decided to stay with Rituxan vs going to Ocrevus.
• I plan on starting PT this week.
• I am wanting to set goals for this week, but every single time I plan on doing something, things MesS up.
• I wanted to return to the gym, and my scooter died.
• I fixed my scooter, and my van's ramp died.
• I fixed my van's ramp, and it broke again.
• Conclusion: I am destined to be a "shut in."
• But, there is a possible bright side to all of this:
• I can read again, Rituxan is helping cog-fog [a little].
• I am still able to write here.
• My scooter is repaired.
• My van isn't fully inoperable.
• Conclusion: Life with multiple sclerosis sucks.

So, despite all of this crap happening, I am setting just three simple goals for the end of the week:

→Finish, "Storm Front."

⇉Return to PT.

⇶Try to take more 'steps'.

Let The Good Times Roll

     With all of the sad news from this past week, I decided to share better things, stories of how my life with MS can at times get better.

     Foot drop, at times, will temporarily relent. Does this mean that I can go running? By far the answer is, "No." Rather, I take the time to enjoy walking around without needing to brace myself on the handles of my walker so that I can throw my weight into lifting my leg high enough to let my toes clear the floor.

      Fatigue can go up and down as well. Yes, there have been times in which I was so tired that it was difficult to lift a fork to feed myself, which if you know me makes it all the more incomprehensible. There are also times in which I have enough energy to: get a shower, get dressed, go make coffee, and still hold a tolerably human conversation. I cherish those times, almost feeling I've just come off of another IV of Solu-Medrol without the aftertaste.

      Why would I want to share this topic? Well, it's actually for two reasons: to encourage whomever ends up reading this and to remind me not to lose hope. I am the one I know of that needs the most reminding not to quit, or to lose momentum. I also encourage others that even though it can seem dark, there are times when a little light can pierce through.

Now, without further delay, here is my salute to the memory of Chris Cornell

Soundgarden

Audioslave

Temple of the Dog

Farewell, adieu, and say hello to heaven for us all.

Tunes, Food, and Atlanta Traffic

     This coming week I am headed to The Shepherd Center for my six month MRI. 

     There really is nothing new about it. I have had so many MRIs since my diagnosis (2007) that I am almost able to hum the drone of the machine as it scans my brain and spinal column. Yet, something new has appeared, and I do not mean more lesions. The radiology department now has the ability to pipe Spotify into the ear buds for the entire length of the MRI. So, what did I do? Made my own MRI playlist and shared it publicly so that I can jam to my music with an awesome beat in the background. 

    But, there is also a new added blessing to this trip: The I 85 bridge has been repaired, so I only have to leave at 4 instead of 3 in the morning!

Marching for dimes is easier with a scooter.

This past weekend, I was able to enjoy a fundraiser for the March of Dimes at the hospital where my wife works in Seneca, SC.

     It was an interesting event that was impacted by the summer heat, crowds, and more heat. There were bounce houses, A LOT of concessions with grilled sausages, pop, and funnel cakes. I think that had it not been for my scooter, I would've never survived as long as I did. But, as summer moves into full summer, here's what I took from this event.

The Good:

• It was relaxing to watch my kids run around a safe place.
• It was nice to get out of the house.
• THE FOOD (Need I say more?)

The Not-so-Good:

• I forgot sunscreen and burned: my head, tops of my arms, and knees.
• I didn't pay attention to my scooter battery and almost lost its charge.
• Getting too hot is NEVER good.

The Funny:

• Watching my three year old try to eat a funnel cake while, "Powdering" her nose.
• Seeing my 10 year old's pictures from a free "Glamour Shot," booth for kids. (Think of a pirate with bunny ears.)
• Falling asleep in the lobby of the hospital because I needed: A cool place and an outlet to charge my scooter.

All in all, it was a great time.

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

Disturbed dropped plates; DJs drop the bass. I just drop anything.

     Dropping things is a common event in my life. But MS has given me some good examples (a lot of them are quite funny in retrospect) of how often and oddly I drop things. Other times, this MesS has prevented me from even trying to hold valuables or babies.

     Using the cliche, "Dropped the ball," fits this MesS very well. I have forgotten things, remembered the wrong information, and at times missed very important events. In fact, I'm sure that I've forgotten something already while I'm typing this. Usually, I have to rely on my phone and my reminders to keep me on task. Yet, that only works IF I remember to set a reminder not to forget to do what I needed to remember. So, here's a few mishaps and their resulting adaptations I've had to make.

     I have dropped so many keys so many times that I now make sure that I know where to find a spare set before I leave. My van is a conversion with elevated passenger and driver seats. I have actually dropped my keys on the floor and under the raised seat so that I needed someone to reach under the seat and retrieve the keys. Then, I've also managed to drop not only my keys, but also remotes, plates, bowls, and cups in the void that is the couch. If you can, then imagine me using my walker for balance as I, with very little success, try to search under the couch for a dropped set of keys. Yet, the most frustrating place in which I have dropped my keys is my own pocket. Thanks to lack of feeling and poor coordination, it can add anywhere from 10 to 15 minutes just to find my keys in my pockets.

     Now, I LOVE coffee. Who doesn't, right? But at times the liquid of joy, cradle of my life, can also be a pain thanks to MS. From unsteady hands, to missing my cup, to sudden spasms, the mere task of holding a cup of hot coffee can be monumental.

     But, the most frustrating aspect is being afraid to hold babies. Please don't think that I slip into the pseudo-macho, "I ain't holdin' no baby," type. My reluctance to hold a baby stems from my fear of dropping the child, literally. From spasticity to spasms to sudden weakness, I simply do not trust myself. It was most painful when we traveled to see my brother and his wife shortly after their first baby was born.

     I drop A LOT of things, but sometimes I just have to pick up the pieces, clean up the mess and get another plate, or glass, or key, or just ask my wife to hold the baby beside me.

Big Pharma or Big Brother?

     In the past few years, I have done A LOT of drugs. I am NOT going to decry one over another. With MS the key word is sporadic, and what is awesome for me might stink for you.I have included a link to each medicine's own webpage so you can better read about each one. So, what follows is my best attempt at an impartial account of my experience with each and what lesson(s) I took from it. But, as you read, my bias will become highly evident. 😏

Betaseron (546 injections*)
     This was the first MS med I tried. It's an injection every other day. It did great for a few years and then tapered off. From my time with this medicine, I learned just how important it is to pay attention to which day is a shot and which isn't. 

Copaxone (1277 injections*)

     This med came with daily injections, and I again became optimistic, until a severe relapse left me bedridden, barely able to see further than five feet, and unable to taste. This medicine taught me the truest meaning of the phrase, "Needle fatigue."

Tysabri (12 infusions*)

     This for me, and many others, was the saving grace. I had to sit for about an hour of infusion, then 45 minutes of observation. The infusions were only a once a month, and by the fourth infusion I was driving, walking, and working as a part time tutor. From this medicine I learned the importance of patience. It was a one hour infusion followed by a 45 minute observation. After two infusions, I was getting anxious after seeing no change, then after three a minimal change, but after four, I started seeing dynamic changes. IF there ever is a solution to the JC virus, then I'm going back to it ASAP. 😏

Tecfidera (547 pills*)

     Because the danger of PML (Progressive Multifocal Leukoencephalopathy) was established before I began taking Tysabri, I started searching for a DMT (Disease Modifying Therapy) to replace it when my year with Tysabri was done. I discovered BG-12, which later became Tecfidera. After reading articles and following it, I was more than eager to begin it after stopping Tysabri. It did well, but then my leukocyte count plummeted. I received a call from my MS doctor's office to stop it NOW. Apparently, the dreaded PML surfaced with Tecfidera. So, I was placed on another pill. Tecfidera taught me to appreciate my MS doctor. My leukocyte count dropped dangerously low, and as soon as it showed, his office called me and had me stop Tecfidera that day. They had even called me after hours.

Aubagio (547 pills*)

     Aubagio did well, as far as my MRIs went, but my walking started dropping quite a bit. I went from a cane to a rollator to a mobility scooter. Now, I'm look at a manual wheelchair or a complete walker. Aubagio taught me how to take bad news well. My walking tanked, I wrecked a car, and now I'm looking at a possible wheelchair. But I won't let it get me down.

Rituxan/Rituximab (3 infusions)
     Rituxan is the medicine that I am currently taking. It is a six hour infusion that begins after I have been given the pre-meds. I leave my house at 4:00 AM and am home by 4:30-5:00 PM. It is an interesting ride so far and I have seen some improvements...stay tuned for more. Rituxan is still teaching me, mainly to stay focused.

*Values are estimated; I am horrible with numbers. 

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. 😁😁😁

A Hospitable Hospital

     My life with multiple sclerosis brought me into contact with many different types of doctors, nurses, and therapists. All are different, and all are great at their calling. But none can compare to what I've experienced at The Shepherd Center's Andrew C. Carlos Multiple Sclerosis Institute. Which is downtown Atlanta, GA. It is a phenomenal place, which makes it so worth the drive to get there!

     I could gush on and on about how awesome of a place it is, but then I'd tire myself out. Allow me just to say the best part of going there:

Being there in a walker, wheelchair, or scooter is NOT uncomfortable.

Virtually Supported

Online Communities: Are they really that great?

    Since my diagnosis, I began looking into online communities, websites, YouTube videos,and chat rooms that focused on MS. Some that I found merely turned out to be more like cliques, while others that I've found really are genuinely supportive. They are well maintained and friendly to those new to this MesS.

1. We're Not Drunk, We Have MSTM 

     As most of the world is familiar with the titan that is Facebook, the idea of groups is nothing new. I found a closed group, asked to join, and was amazed at what I found. This is an amazing group of almost complete strangers. I feel comfortable sharing my worries and woes that elsewhere would only seem like complaining. The common bond is not only MS, but also a common knowledge of how this disease impacts lives. While each of us deal with different levels of symptoms, medications, problems, or joys, we all understand each other.

2. Rituxan For MS
     This group is also from Facebook. But it is geared toward a specific medication that is rather new to the world of MS. Here I find support and help with issues that surround this medicine and its six hour infusion.

3. My MS Team
     My MS Team is a unique site. It is basically a Facebook devoted to multiple sclerosis. It is full of good support, ideas, and information.

4. Google+
     Google+ is growing. I think of it as the more academic of two social networks that I visit. I am a member of a Multiple Sclerosis community on Google+ and it is far more academic than social. I do not mean that to demean one or the other, but rather I view as used certain libraries while in college. For a more 'fun' and loose research night that involved maybe going to a restaurant, or a street show, we'd go to Athens. If we wanted a more cerebral, academic night of research and maybe some coffee, we'd hit Clemson. It is like that for the differences between Google+ and Facebook. For some more relaxed and sociable fun and a little information, I head to FB. If want a more seriously focused time, I head to Google+.

Note: This is just a small look at what support I have found online. There are hundreds of groups, sites, and networks out there that I'm sure I would love. I am also sure that there are some people out there who do not like online support. That is also fine. I'm just here sharing my experiences with four different groups of people with MS. 

An Island, Not An Ivory Tower

     Donne once wrote that, " . . . No man is an island . . . " (XVII). 

     While I agree with the idea that we are all connected as a culture, a race, a planet, multiple sclerosis has made me into an island. Yet, I'm not an island in the way that he intended it. I do not consider myself above, superior, or better than anyone else. Likewise, despite my often self deprecating spells, I don't really feel superbly inferior to others. Here a few examples of my, "Islandisms."

• I might react improperly to things.
  MS can often mess up how I verbally and physically respond to things. It can be funny, embarrassing, or insulting. The worst case happened about three years ago. At a party with some new friends, one brought me a beer, and I flicked him off! I still think of that every time I see him.
• I might use the completely wrong word without realizing it.
  I don't mean saying the wrong color when asked if I prefer black over blue. I mean complete phrases that have no meaning. I will think I'm using the correct words, hear them in my head, and then wonder why no one understands me.
• Sometimes I use no words at all.
  I will carry on a conversation with someone and yet at times say nothing.
• I get tired doing almost nothing.
  Even to get out of bed requires a lot of effort. Going to the bathroom requires me to plan my steps from whichever place I'm sitting to the nearest, accessible toilet. I often find that this means I do not go some places.
• I often seem aloof.
  I'm actually just more aware of my potential for embarrassing either myself or someone else. My silence can come across as a snide or snotty superiority, but it's more of a cautionary measure. When I do not speak, it is to prevent using the wrong or improper word. I also refuse to join people at times because I will be too far from a restroom.

Like an island, these barriers are not impassable, but it's not done with ease. Things like: the ubiquitous, "Spoon Theory," and the growing number of instances I see of MS in popular television shows do help. As it was so eloquently said, "You just gotta keep livin: L I V I N..."(Dazed & Confused, 1993).

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.

Alterations

     Since my diagnosis, I've experienced some changes and mentioned a few of them earlier. Here are some more.

1. Cruel Weather

     A common symptom to people with MS is severe heat intolerance. I live in Georgia, basically that means some days during the summer I stay at home with the AC. However, as bad as heat can be, changing weather is just as rough, which makes me all the more eager to move to Quito.

2. Finding Restrooms

     No matter where I go, I always make sure to locate restrooms. If I have my mobility scooter, then I hope either that it's large enough to fit the scooter, or that there is enough handrails that I can safely navigate through it. If I have my walker, then it's much simpler to go.

3. Planning More

     Spontaneity is rare. Something as simple as walking across a room requires me to plot my course, making mental notes of what to avoid. I try to plan impromptu activities, try that is.

4. Spasticity Stinks

     At times muscles in my legs or arms will suddenly flex. It can make my hands contort to look like a claw, and it has extended my legs once to slam the gas pedal. I can usually feel it coming and sit to wait it out. For more severe cases there is medication. But, it is fun for my youngest if spasticity his my legs while I'm sitting in a chair. She uses me as an indoor slide.

5. Memory Issues

     Simply put, my memory is bad. To combat the problem, I keep my phone with me and make notes as needed or set reminders for things. I would share a funny story about my memory, but I can't think of one.

6. Written Off

     As bad as my penmanship was in school, it is much worse now. I do not like to write unless absolutely necessary. Since my fine motor skills are not so fine, things like holding a pen, writing words, or even numbers is tough. On the plus side, I write like a doctor.

     These are just a few of the changes that this MesS has brought into my life. I'm sure that there are more, but I cannot think of them right now (see #5). That'll give me more posts later.

Gracias/Danke/Merci/Grazie/благодаря (Part 1)

No matter which word you prefer, they all mean the same thing: "Thank you."

     In 2007 my struggle officially began. After dealing with mental and physical symptoms that were first blamed on a pinched nerve, I went to see an MS specialist once numbness arrived.* Yet in that time so many people have been so helpful to me that I cannot thank them enough. So, here is part one.

     First, the greatest portion of my thanks goes to my wife. We dated in high school, despite going to different schools, then long distance through college, and now we've been married for 13 years. I am constantly in a state of profound wonder at the woman she is. When MS first came into our lives, it finally provided an answer to all of the haywire things that were happening. I still remember her tear stricken face as she read over the symptoms of MS, ranging from balance issues, to memory problems, to speaking difficulty, and said, "This explains so much!" That was almost ten years ago, and she still has stuck by my side through ALL of the problems that multiple sclerosis has thrown at us. I can say very seriously, confidently, and lovingly that I doubt I could have lasted even this short time with the MonSter if it weren't for my wife.

     Second, I would like to thank my dad. Of all who were upset at my diagnosis, despite his being the stereotypical, stoic, my diagnosis really upset my him and inspired him to use his most enjoyable recreation: cycling. Upon my diagnosis, my dad began looking into the National Multiple Sclerosis Society, specifically their Bike MS. Since then, dad has been faithfully fundraising for MS. In addition to riding for the National MS Society, dad also fundraises for them in other ways: hosting spaghetti dinners at our home church (Faith Fellowship Alliance); wrapping gifts each Christmas season at the local mall for a donation, and having fundraising sales with local businesses. There have been countless people that helped in this endeavour, and there are too many to name. So, I thank them all for helping the organizer, Gary Evitt-my dad, who also happens to be listed as their top fundraiser for the upcoming Escape to The Lake.

     Third, I have to thank my church family at the First United Methodist Church of Toccoa. When Missy and I started attending, my MS was well established in our lives. We also came to know others that also were familiar with it. But, the astounding thing about this church is their truly generous and Christ-like nature. There are far too many examples of FUMC's generosity to my family, but as a testimony to their good nature, two events. The first occurrence came about when my wife and I were looking into having a handicapped ramp installed on our front door because my walking had deteriorated so much that getting in and out of the house was taking me about 20 minutes to navigate three steps onto a concrete car port. We started by asking on Facebook for recommendations. Someone from the church read our question and contacted the pastor who called us to let us know the church builds ramps for those in need, free of charge and according to ADA specifications. The second event happened as a result of my aforementioned accident. The church got together, and within a week, assembled an afternoon luncheon fundraiser. They raised over $4,000! We were and still are in awe of their blessing.

     Don't allow MS to take away your faith in humanity. Our family has experienced so much benevolence at the hands of others that the good, by far, outweighs the bad. Sometimes it is dark, but even the darkest night ends.

Driving One Crazy

Driving can be fun, arduous, escapist, or therapeutic, and at times one trip could easily contain all of these. But, my recent experiences with MS gave me: frustrating, dangerous, expensive, humiliating, and revitalizing.

     I started driving in 1995. Since then, I've driven from PA to MD (over 4 trips), PA to GA (well over 20 trips), GA to FL (4 trips), and several more that I cannot remember (I'll write later about memory issues). In all of those trips, I have had my share of accidents. I've totaled two cars. The first car that I totaled, was not related to MS. But, the second vehicle that I wrecked, happened because of two things: MS and stubbornness.

     For a few years, my eldest played recreational soccer (Rapids FC), on this particular day, she had a game scheduled in the afternoon, and as usual, I planned on taking her to the game and stopping for a hot chocolate/coffee and a snack on the way home. But, something was wrong, and I felt it as soon as I started to walk to the car (a mere 50 feet). However, I foolishly ignored the premonition and proceeded to fall getting into the car. Being the selfishly stoic 'guy', I decided to drive to the game rather than not going. As I sat in the driver's seat, backing the car down to turn it around, I felt odd in my legs. They seemed even more rubbery than usual. Yet, I pressed on,I managed to turn my car around, start down the driveway, and then my right leg spasmed and slammed on the gas.

     My vehicle rocketed down our driveway, banked off of a hill, and sailed over a fire hydrant. Then it bounced on the road, dislodged the right, front tire, and swerved through the vacant yard across the street. I plowed through a chain link fence, sliced up the yard, and crashed through the opposite, picket fence. I almost wrecked into the next house, but was able to steer my car away from the house and back to the picket fence. I was able to lift my foot from the gas pedal, quickly yank the gear shift into park, and cut off the engine. Neighbors came, first responders arrived, and the show ensued. No one was hurt. I went to the ER. The doctors checked me. I went home.

     That was in March of 2016. I stopped driving, and only threatened to drive when it was needed to scare my daughter into better behavior. In the weeks that followed, I contacted my MS doctor in Atlanta, told about my wreck, and set a date to be evaluated for competency and using hand controls. In a few weeks time, I was scheduled to meet with an evaluator at The Shepherd Center. I had already worked with him to help develop this test for MS patients. We both chuckled at my return and began the evaluation that included: understanding of general driving principles, self awareness, common sense, and actual driving with hand controls.

     The exam part of the evaluation was easy. I hadn't forgotten how to drive; I just couldn't use my legs anymore. After about 40 minutes of different tests: hand strength, reaction timing, visual acuity, and more, I was allowed to try driving with hand controls. Now, the Shepherd Center is in downtown Atlanta. I was instantly returned to the state of a nervous 16 year old. But, the evaluator assured me that we'd only be driving around calmer parts of Atlanta (the Governor's Mansion). After I demonstrated that I easily used hand controls, I was given a surprise: next, I'd be driving on the interstate! I survived, and now I can drive myself to Atlanta (90 miles one way) and deal with rush hour.

     Driving with hand controls has been awesome! It took some getting used to, but I love it. I highly suggest that, if you're worried about how MS (or any other problem) could be taking you out of the driver's seat, then please explore getting evaluated for and using hand controls. It's not free, but it's also not a massive expenditure, and there are many organizations that offer financial help to those in need. I'm in the process of gathering links to different sources, but the first one that I go to for information is the Multiple Sclerosis Society of America (MSAA). They're an excellent source for people in my position (living with MS) as well as those with family or friends that are fighting this MonSter.