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.

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.