 Looking through the Summer 2009 issue of Momentum, the NMSS magazine, I came across the page that dealt with the issue of brain tissue donation. I don't know how quickly one decides that they're cool with donating their own brain matter once they're dead and gone, but apparently I do so pretty quickly. According to said article, less than 1% of people living with MS "make arrangements for a posthumous donation of brain tissue." Those are some puny statistics. I immediately knew that this was something I wanted to do, so I earmarked the page, planning on coming back to it later. It was only after having my neuropsych appointment and thinking (borderline) obsessively about brains for a few days, that I remembered the article.
Rocky Mountain MS Center was the first of three tissue banks listed on the page, so naturally it's the first one I looked into. After checking out all of them, I decided for a few different reason, that this was the tissue bank I would sign up with. One of the main reasons was the fact that the procedure could be done in my hometown, if you will. I know that another one of them bascically said the procedure would have to be done at their facilities, which just so happened to be in Chicago. Somehow I think this seems a bit unmanageable. Also, the Rocky Mountain MS Center was the tissue bank which was exclusive to tissue donation specifically for MS research.
I suppose this seems like a bit of a morbid subject, maybe that's the reason that so few people have signed up. Who really wants to talk about death anyway? In thinking about being an organ or tissue donor, I suppose you have to actually ponder your own death, on one level or another. For some reason I don't really get all that far in this part of the thought process, it's just kind of a "meh" thing for me. I have been signed up as an organ donor for about eleven years now, and have only recently discovered that perhaps this is something I will have to change. I learned from one of the sites I visited that because there is a chance that MS may be caused by a virus, there are certain organs which are not recommended for donation. So rather than giving someone a kidney with possible side of MS after I kick the bucket, I have decided that donating some brain tissue for further research into MS would be a better option.
It goes without saying that for those of us less educated on the removal of brain tissue, it sounds kind of gorey. The procedure is actually quite simple, for the trained professionals of course, and frankly we aren't going to present for any of it, at least I don't believe so. There will be no visible damage done to your body, save whatever fate may have nabbed you post donation. So if you're checking yourself out from some distant planet, or perhaps as an annoying fly buzzing around the funeral home, and you happen to catch a glimpse of yourself post bucket kicking, there's a good chance you'll still be...pretty.
You can check out the latest issue of Momentum for more info, or just dig around on the internet for that matter. I downloaded some forms from Rocky Mountain MS Center, went over them with my Mom and boyfriend, and have sent them in. You'll need to make sure you've made clear your wishes with your closest family members, since they will be responsible for making this happen, once you've made your final exit...not that any of us are going anywhere, anytime soon.
 Shortly after diagnosis, I found out about the MS walk. Being that I have so much time on my hands these days, I got all excited about having a project to work on. Fundraising being that project. So I made up some sweet flyers and sent them out to family and friends, and ended up raising almost three hundred. I probably could have worked a little harder to raise more, but I was a-okay with the total donation. Upon over-thinking the whole deal, I became sort of irritated with myself that I got all gung-ho on this thing so shortly after my diagnosis. It sort of became more of a reason to talk to people about my MS, which was irritating on a few different levels. I go back and forth between feeling okay with sharing it with people, and then kicking myself in the head for having said anything. I'm not talking with family and friends, but people who aren't part of my everyday. Either way, what's done is done, and I know the only one who is over analyzing this is me. Narcissism to the extreme.
Anyway, I found myself somewhat nervous/irritated at having to be at this event today. This last week has been one of the more difficult for me in recent times, in terms of my emotions. I seriously feel for people who are bi-polar, because this is how I've felt. I have made an ass of myself with friends, I have cried at work, I have been a total jerk to my boyfriend, I have just been an all around nutter. I am seeing a light at the end of the tunnel here however, and honestly I feel like the walk today has sorta helped me start peeping my head out of this blanket of funk.
So once I got to the event site, I was immediately relieved to see that there were plenty of people there. It wasn't as if I had to join some drum circle or god forbid, introduce myself to people. It was totally laid back. I turned in my cash envelope, got my sweet ass shirt, and picked up a hot pink squishy brain courtesy of the Providence Brain Institute, which is where I go now. Woo! My mom, sister, niece and two of my awesome friends were there to walk with me. I saw a girl who was probably about my age, whose boyfriend was wheeling her around. Based on my awesome ability to "know" how cool someone is upon first glimpse (not really) she seemed super cool. She had sweet shoes on, what can I say? Anyhow, I was thinking that if I wasn't so anti-social and all around awkward these days, I would have tried to strike up a conversation with her. I had this fleeting daydream about having a friend here who I could get together and bitch with about MS, since I feel like I'm maxed out on bitch time with everyone else. Anyway.
So when we kicked off the actual walk, "Eye of the Tiger" was playing, which was great. I had a flashback of Andy singing this last month when I had my injection shit fit. It's the all time number one song to try and get one pumped up for just about anything. My sister has this hilarious dance that she does for this song, and I tried to get her to do it, but she refused. So the 5k wasn't terribly long, and we sort of had to cut in line a bit because the slow pace was driving me a little batty. We were done in just over a half hour, and I found myself almost wishing we weren't done just yet. Overall though it was perfect, short and sweet. I got in and got that shit done, and I'm glad I did. I was worried that I jumped into the Walk MS water a little too soon, but I don't think I did. I had fun and I definitely don't think I have any qualms about doing it again next year. I am excited to have one walk under my belt, and to know a little more what to expect next year.
 I was reading a blog the other day, which lead me to another blog, then to an article, which I read and found an interesting MS symptom which I had never heard of. Still following?! The article linked to this page on the the NMSS page about Emotional Changes with MS. I have done a lot of reading about the emotional effects of MS, mostly because there are times where I feel like I'm on crazy pills and I want something to blame it on, but also just because I like to be informed. Anyway, the new symptom I found was was Uncontrollable laughing and/or crying (also called the Pseudobulbar Affect). To be totally honest I sorta laughed out loud when I read it. What an interesting symptom.
I personally have never had any experience with this one, and as I said had never even heard of it, but since I first saw it, I have been seeing info about this everywhere. I was doing my usual clinical study search and found a local study in Ann Arbor that was testing a medication to treat this...crazy! The medication that was being tested was for MS as well as ALS, so I called them up to get some more information. No one answered but I thought the symptom was interesting as well as that it had a connection to ALS. So I guess if you're experiencing this symptom, I guess there are drugs available to treat it.
I often wonder how much we can blame MS for our emotional symptoms. I often feel that as a woman, my emotions get totally disregarded because the world wants to blame anything other than smiles and giggles on PMS. Anytime you have an emotion that's over the top, it can't possibly be a REAL emotion. I don't really think that my MS has effected my emotions, but even if it has I won't allow myself to blame it on the MS. I still feel like even if your MS changes your brain, or you have a raging case of PMS there needs to be a level of calm that you can find within yourself. No one responds to a crazy person.
So in the mean time you should check out the NMSS's page on the emotional changes in the brain after MS. I don't think that you can deny that there are changes that happen after a MS diagnosis, whether those changes are actual physical changes in the brain, or if they are just how we deal with our futures. So while some of us deal with bowel issues, constant crying, and/or depression...some of us get this sweet symptom:
Inappropriate Behavior
A very small proportion of people with MS exhibit inappropriate behavior such as sexual disinhibition. This type of behavior is thought to result in part from MS-related damage to the normal inhibitory functions of the brain. These behaviors may also reflect very poor judgment related to cognitive dysfunction caused by MS. Such behavior is generally beyond the control of the individual and is not a sign of moral weakness or sociopathic tendencies. The treatment of these problems is complex. The person with MS may require some form of psychiatric medication, perhaps along with psychotherapy. Family members will probably need supportive counseling since these behaviors are often shocking and disruptive. In some cases, the affected individual may require supervision to prevent the manifestation of the behaviors in question.
I would venture to say I've probably been inappropriate before and after my MS diagnosis, but damn...this one is good. Next time someone questions my "moral weakness" or "sexual disinhibition" I"ll just be like , "Hey I have MS, I'm coping best as I can..." Perhaps now I could tell some dead babies jokes without consequence....
 There are certain things about MS that I strongly dislike. The medications are high on the list. The symptoms are right up there too, and the prospect of permanent disability doesn't exactly thrill me either. But the thing that bothers me the most...more than ANY other thing...is the stupid ass saying that people with MS use. Here are just a few of my own personal pet peeves.
I have MS, if does not have ME! - (This is bullshit. I know it is supposed to be a positive sentiment, but its a lie. You and MS are a package deal, and when it comes down to the end, no matter who you are...MS will win. We dont have a treatment that is guaranteed, yes it has you...by the balls.)
MonSter -(Capitalization in the miTTLE of a woRd is obnoXIous. I doN't care if iT heLPs you PrOOve a pOInt.)
We exist to make sure it doesn't. (I call shenanigans MS society. I'm pretty sure you exist and so does MS...someone over there isn't doing their job.)
Keep us moving toward a cure. (I am the official MS Debbie Downer, but that doesn't change the fact that a cure is highly unlikely. There is no money in the cure...the last thing we cured was Polio. That's because once you cure people, they don't have to spend anymore money. We will get treatments, but that is all. And no matter how much we all move, the cure/treatments wont get here any faster.)
I am the fight against MS (Nope. Liar. You are someone living with MS. You can "fight" all you want, but it will win in the end. We can work on quality of life and other things, but if your MS decided to poke out its asshole head, its going to. No amount of little sayings and annoying ass myspace glitter banners will change that.)
Ok. Whew. Glad I got that out, I can't explain to you how much those stupid ass little sayings get to me. Maybe its just because I don't think that a saying or a glitter banner will do anything. I don't think those saying really keep morale high, and I damn sure know that they do not help me feel better physically or mentally. You can help very few things with hope pancakes and butterfly sausage.
There is one, however, that I do like:
Join the movement
This says something. Its vague yet direct. It makes a statement, it tells you what to do without all the stupid ass extra bullshit. 3 words that have so much behind it. Get involved, spread awareness, help others. A movement is a powerful thing.
Some random online dictionary defined it as "A series of organized activities working toward an objective ; also : an organized effort to promote or attain an end". That's the kind of saying I want to be behind, something that is working for the greater good, something that will produce a result.
Very few things in history get called a "movement". But some marketing genius at the MS society gave us this term to use. Spreading around a glitter banner will not spread awareness or hope for MS. Being apart of the MOVEMENT will.
p.s. Stop sending me stupid glitter banners on myspace. I HATE those damn things and I will deny every single one.
p.p.s. If you love stupid sayings and tacky glitter banners, and think I'm a total douche for talking shit about them, send me a email. Get it all out there, I'm telling you it feels good.
 There is a local company here in Michigan, who just so happens to have some extra thousands of dollars laying around. They are donating $10,000 to a charity that is picked by the public. The National MS Society has made it past the first round.
While I honestly question how the Society directly helps us, I do think that their hearts are in the right place and an extra 10Gs could be helpful to someone, somewhere.
So go here
Fill in some info and click for more options on the bottom and you'll find the Society. Its a really great thing what the company is doing, and even if you don't promote the Society, there are some other AWESOME charities on there.
Vote.
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