"And now for something completely different and new..."

Ocrelizumab/Ocrevus

     There was big, earth shaking news in the world of MS: Ocrevus, or Ocrelizumab, has been cleared by the FDA as treatment for relapsing, remitting multiple sclerosis (RRMS) 

AND primary progressive multiple sclerosis (PPMS). 

Why is this such big news?

• When I was diagnosed with MS in 2007, I was told that as long I was only in RRMS that there was medicine available to help me.
• However, if I should progress into PPMS, then the only help available to me would be steroids or physical and occupational therapy. PPMS was the 'event horizon'.
• Now, there is a glimmer of hope beyond what I expected.

Will I take Ocrevus?

• I am not sure, yet.
• I am not unhappy with Rituxan.
• I want to make sure that I have gone progressive.

     When I was diagnosed, there were four recognized medicines for MS: Avonex, Betaseron, Copaxone, and Tysabri. I remember my MS doctor saying that there would be more to come, but I thought maybe I'd see one new medicine in my lifetime. I've already seen many new medicines arrive. I'm sure that there'll be more as well, but I keep hoping for the day when I won't need any.

For more info:

Shepherd Center's News

National MS Society

Munga

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

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

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

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

• Don't be afraid to ask for help. 

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

• Don't drink too much caffeine.

• Do enjoy the drive.

• Do take time to notice things.

• Do get some chipped ham when in Pittsburgh. 😁

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

• Don't let the MonSter take control.

• Do take time to catch up with old friends.

• Do remember the good times.

Most Importantly:

Pack enough underwear. 😁😁😁

Keep/Quit Fighting/Trying

Any combination works with those words.

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

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

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

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

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.