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'.

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

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. 😁😁😁

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. 

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.