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. 😁😁😁