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.