We Are Family!

Brothers and Sisters!!

They did not leave when it arrived,

And with their love and help, I thrived

It’s not been easy,

At times uneasy.

Thankfully,

I survived.

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

TIMBER!!!!!

     We've all fallen. From learning to walk as a baby, to learning to roller blade as a fat kid on a hockey team, to relearning how to walk with a rollator, I have had plenty of falls. Usually, as one matures, the frequency of falling lessens. But with this MesS, it's not the case. Living with MS for ten years now has taught me some valuable lessons about falling:

• Falling hurts.
  Plain and simple hitting the ground, a wall, or someone else is painful. I am lucky that I have yet to break any bones, but I have broken: laundry baskets, canes, a rollator, a toilet, and needed stitches. It all hurts.
  
• It'll happen again.
  Despite having an awesome MS doctor, access to good physical therapy, and walking aides, I have to accept that I'm going to fall again.
  
• It's not always MS.
  Yes, a few of my falls were the results of MS causing mayhem in my nervous system. But, there plenty of times in which I've fallen purely by a bad chance. Sometimes MS has noting to do with it.
  
• It doesn't always 'mean something'.
  Not all falls mean that my MS is getting worse or better. True, I tend to fall more as symptoms escalate, but a fall doesn't always mean it's getting worse, or better.

Some falls are worse than others.

     So, falling sucks. There really is no nice way to put it. From the V shaped scar on my forearm to the countless scars and knicks that 'decorate' my shins, evidence of falling is all over me.

But, even with a rollator I can still walk and manage to get back to my feet, but it takes patience, perseverance, and more patience. 😉

"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

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.