Progress Update: New Test Results and MRI In

WELL... Good news and bad news (kind of). So far all my blood tests have come back normal. This is what has processed so far:

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Progress Update: New Doctor and New Pills

Today was a rather successful day! Saw my new primary care practitioner (family doctor) and he was probably the coolest doctor I have ever had. He listened, he was open to everything I had to say, and he said the most respectable thing a doctor can say: "I don't know". To me that earns all the respect I have to give because now I know that this guy is honest and does not have the stereotypical God complex I have been dealing with for so long. I didn't have to worry about him saying "No, that can't be, I know it can't, so testing for it would be pointless because I know, I'm a doctor, I'm THE doctor."

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Progress Update: Prelude in C Major

So I can finally drive again! I got car insurance so I can finally drive my Dad's Mustang, feels good to drive, to be able to get out and not worry about dying of exhaustion on the way to my destination! To celebrate (and take a brake from the stress of life) I decided to go hang out with my fiend Rodney. I actually ended up spending the night because I just needed to get out and hang out you know? First day was awesome, I felt normal again: I could drive, I had money, I could go out, it was good for me. Second day was not so great.

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Progress Update: Getting around

Well, made it to Starbucks this morning. Half hour walk, maybe 2 miles, not bad at all. I bought some lottery scratchers on the way at the gas station and hopelessly scratched them as I was waiting for my strawberry smoothie here at Starbucks. Nothing. As much as I expected actually. So now I'm sitting here wondering what I'm going to do about a car, a job, and all that good stuff. Man... This smoothie is not that great...

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Progress Update: Still Getting Worse...

It seems like I have been getting steadily worse for a while now but at this point it's starting to dip into the "effecting my functionality" zone... My left side is getting so much weaker... I remember waking up in the middle of the night the other night and I could hardly lift my arm as the weight of my blanket was just "too much"... My left leg was so weak the other day at the store that it was starting to shake just because I was standing on it. I am noticing today that my right leg is getting a little shaky as well which scares me... I don't want to be back in a wheel chair... I don't know what I'll do with myself if I loose the ability to walk again...

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MS Patients Have to Play Doctor

If there is one thing I have learned so far as a "newly" diagnosed Multiple Sclerosis patient (going on 1 year now) it's that the most devoted doctor an MS patient will probably meet is themselves... That's right... Not all of us are lucky enough to come across a doctor who truly wants to help make us better which is of course my personal case. I can't speak for everyone but I have talked to many other MS patents of all ages who feel like they have to play doctor because their doctor's just can't seem to take care of business.

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My Experiance with Kaiser Permanente and Multiple Sclerosis

WARNING: The Matt writing this article is not a happy Matt. ;^b

Everyone who has ever dealt with Kaiser Permanente will tell you that they either LOVE Kaiser or HATE Kaiser. We all have had different health situations and we all have had different experiences with those situations and Kaiser. I myself never really had a problem with Kaiser when it came to the basic, routine stuff. I mean, they have some pretty cool technological features that help get you in and out, just the way most people like it! That of course changed when I was diagnosed with Multiple Sclerosis... Funny, my family used to have United Health-care and then we had to switch to Kaiser... My mom had jokingly said "God forbid one of us get seriously sick or injured" when this happened. SURPRISE! MULTIPLE SCLEROSIS!

So what's my beef with Kaiser your probably asking?  Well, let me make something clear. For the sake of this article I have to keep my criticism local: Kaiser RIVERSIDE - specifically the neurology department. I can't apply my criticism to Kaiser as a whole as I have not been to every Kaiser Hospital in the US nor have I seen every Kaiser doctor so in order to be fair I have to keep it local.

Kaiser Riverside: Neurology Department - Not the best place to get help if you have Multiple Sclerosis.

The neurologists here all seem to have an ego larger then the actual building they work in... Any time I have mentioned things like dieting or exercise to anyone in this department I have received the same response: A chuckle followed by "Well there really is no evidence that helps treat MS at all." Anytime I have mentioned wanting to see an MS specials I again receive the SAME answer from everyone: A chuckle followed by "There's no such thing as an MS specialist, ALL Kaiser neurologists are MS specialists, there is no certificate out there stating you are an MS specialist". That's funny... I know of a couple neurologists out there who claim to be MS specialists at MS centers who would probably beg to differ... They might not have some fancy piece of paper but they definitely know a hell of a lot more about MS then a regular ol' Kaiser neurologist.

So  I am constantly battling with the doctors at Kaiser Riverside for tests they don't think are necessary, alternative treatments that either "don't exist" or "probably don't work because there is no evidence that they do", referrals, everything! One doctor wants me on nothing but steroids and another doctors wants me on... NOTHING! It's been almost a year and I JUST had my second MRI done today and I had to fight for that as well... Everyone told me I have a really aggressive case of MS yet no one wants to do any kind of routine check ups, MRI's, or blood tests... No one wants to send me to a dietitian, physical therapist, or psychologist. Nope, the Prednisone will fix everything! Because Prednisone makes Kaiser money and Dieting doesn't... That's REALLY how my family and I feel when we talk to these doctors, they just want our money... They are pushing pills for the pharmaceutical companies... Pills don't fix EVERYTHING.... A lot of pills cause MORE problems but no worries, there are pills for those problems too! Money, Money, Money!

I finally was getting fed up with all this and wrote an email to my last neurologist who had told me that I would probably not get any better but I was well enough to go back to work because I could stand on one leg and touch my finger from my nose to his finger. This same doctor was talking all sorts of "mess" on the MS Specialist at Loma Linda and told me that if I did end up seeing the Specialist, which would be a waste of time, not to let him treat me because basically he didn't want to work with another neurologist on the same patient... Might get confusing... Um... Your a NEUROLOGIST, if working with another doctor might confuse you, I'm a little concerned about you trying to treat an autoimmune disease... This is the same guy who couldn't properly define the difference between RRMS and SPMS.... Anyways, here is the email I sent him followed by his response and then my responses...

______________________________________

----- Message -----
From: Matt A. G.
Sent: 5/12/1
To: S. S. G. DO
Subject: MS Symptoms

Hi,

Just thought I would email you because my symptoms are still slowly getting worse especially since I have been decreasing my Prednisone (or so I think). What is your advice? There has to be something I can do beside NOTHING because obviously letting it run it's course is not going to get me anywhere... I'm growing really frustrated as I feel beyond helpless. I had one month of near 100% health where I was out hiking, jumping from rock to rock, and now I have to watch my step at the curb... I refuse to believe that this is it. What are my treatment options besides Tysabri? I'm not looking for the typical textbook remedy, I would like to know what options are out there for taking care of the kinds of problems I have. I have been on both ends of the MS spectrum, HORRIBLE HEALTH and GREAT HEALTH, now I'm stuck in the middle and not really moving anywhere and I can't stand it... Thankyou.


----- Message -----
RE: MS Symptoms

To: Matt A. G.
From: Nurse
Received: 05/16/2011


Dear Matthew,

Thank you for your email.

Your provider reviewed your message and attached below is the response:

G., S. S. (D.O.) 5/16/11 08:14 AM Signed

Patient needs to f/u with Neurology. Thanks.

Nurse

On behalf of _________________ DO, OSTEOPATHIC DOCTOR
FAMILY PRACTICE
________________
Moreno Valley CA 92553-3116
________________

May is National Hypertension awareness month. Do you know your blood pressure?
Some recommendations to lower your blood pressure are:
Lose weight if you're overweight
Walk 30 minutes, 4 days a week
Eat less salt and saturated fat
If you have hypertension, take your medications regularly as prescribed by your doctor.

______________________________________

Let me stop right here for a second... I emailed the neurology department asking for advice and their advice was to follow up wit the neurology department.... Um... Yeah...

Now at first I didn't see the highlighted part of the message, it looked as though they had just copied and pasted some National Hypertension awareness month memo so I was fairly unhappy... Fairly unhappy being the nicest way I can describe my feelings at the moment. So here was my response followed by my second response I sent after I realized my neurologist had in fact taken the time to sneak an incomplete sentence in there. And yes, I know, I sound like a jerk, that was my goal, it was an "angry letter" haha...

______________________________________

----- Message -----
From: Matt A. G.
Sent: 5/16/11
To: S. S. G. DO
Subject: Really?

 I just need some clarification as to how your response to my last email had ANY relevance to what I was asking about?

Perhaps your just too busy to actually read my email and give me an actual response so allow me to make your job a tad easier.

I will be tapering off the Prednisone as I had already intended to do before I saw you. I will be off all medications except Copaxone. I will not try Tysabri. I would like to try LDN (Low Dose Naltrexone) for a few months while focusing on dieting and exercise something I have also been told by your department has no relevance in the treatment of MS. I would also like a referral to a physical therapist and a psychologist who can better recognize any issues I may be having and better help me deal with them.

I'm aware that the course of treatment I am pursuing does not make Kaiser much money however my soul interest is in healing my body not generating profits.

I'll also be contacting member services regarding my experience with this dept. TY

----- Message -----
From: Matt A. G.
Sent: 5/16/11
To: S. S. G. DO
Subject: Really?

"Patient needs to follow up with Neurology"

So short I didn't even see it.

Anyways, I was under the impression that YOU WERE part of neurology and that I DID follow up with you or do you simply mean that I need to make an APPOINTMENT so you can get PAID to help me as opposed to sending me a quick email which would take maybe 5 minutes of your unpaid time.

The less time of mine that you waste the less time of yours I will waste. Thank you.

______________________________________

Now I know I came off strong but that's because I have gone back and forward with other doctors in this same department for far too long who were pulling the same exact crap with me... I am done with that. I want to get better and I'm not going to let someone's ego get in my way. I have NO intentions of seeing that last doctor again but I wanted him to know that I'm serious about my health and that I'm not going to blindly do what he says without doing my own research or taking an interest in my treatment. This is MY DISEASE and MY BODY that will be with me for all of MY LIFE. NO ONE cares about me more then ME, simple fact of life that applies to EVERYONE, and so this is how I HAVE to be: aggressive.

Eventually I will find a doctor who actually WANTS to help me instead of rob me of my money but until then Matt is not going to play Mr. Nice Guy with his doctors anymore... I have wasted far too much time this year with these kaiser Neurologist (in Riverside) who seem to think they are two steps below God so it's time to kick it into fifth gear and take care of business before their pride results in permanent damage to my Central Nervous System.I will no longer take no for an answer, I won't.


If you have had a bad experience with Kaiser (So-Cal) you can CLICK HERE to fill out an official complaint form.I will be sending mine in for sure! Doctors need to start being doctors!

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A Day to Remember: Janice and her Family

From Left to Right: Janice's Step-Father, Janice's Mother, Me, Janice, My Mother, My Father.

Yesterday was definitely a day to remember as the title says. I had the opportunity to finally meet someone IN PERSON who has Multiple Sclerosis and is about my age! I have only met one person (offline) before who has MS and that was a nurse at Kaiser who was probably in her late 40's. Don't get me wrong, she was very nice, but it was tottally different to meet someone who was in my age group and who was sharing a similar experience (more or less) as me.

Janice is a few years older then I am and has had MS a little bit longer then me but we were not too far off from each other's experiences to prevent us from relating to each other. Unfortunately she lives out of state and was only in town with her mother and stepfather to visit family but I am still grateful to have had the opportunity to sit down with them and share our experiences and knowledge over lunch. Who knows, maybe we will get another chance to hang out some day!

If there is one thing that I learned from Janice and her family, it's that I need to be much more aggressive with my treatment and way more proactive. I can't take no for and answer when it comes to asking something of my doctors: I need to know what I want, go in there, and get it, because this is my life, my body, and my health and I only get one round to do it right. The longer I sit around and let my doctors BS me, the more likely I am to experience permanent nerve damage and as much as I LOVE all these interesting symptoms.... I would like them to go away... As a result of the aggressive actions Janice and her family has taken in battling MS, she is in great health (with a few remaining symptoms of course) and is able to remain active in school and physical activities such as running marathons! Round of applause please!

So I just want to say to Janice and her family, THANK YOU, thank you for contacting me and setting up a lunch to sit down and talk. I was more then happy to meet you guys and hope to see you again soon!

If you would like to visit Janice's blog you can do so by CLICKING HERE!

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Progress Update: Pushing Through It

For those of you who stay in touch with me you know that I have not been doing so well in the last week or so mentally and emotionally. I have been in a rather negative and depressing mood and it was driving me crazy! I couldn't get anything done, I was irritable, and just overall hating life. Well I have been trying to get over that as quickly as possible. Yesterday I made a decent first step: Got up, showered, and walked about 2 miles to Starbucks to sit down and get some writing done. I had a bit of a headache so I didn't get as much as I wanted to get done finished but I still got up and out of the house. My day didn't end as well but I was determined to wake up to a better day.

Today: Woke up, showered, ate, and walked about a mile to Supercuts to get my hair cut. I finally accumulated enough visits on my stamp card to get one free haircut so I decided to knock that out today so I could possibly start asking around for applications. STILL have not heard from disability... Been surviving off what little cash I made from selling my car... At this point, healthy or not, I'm going to HAVE to find a job... I have no other way to survive... Got a ride back home and did some cleaning. Ate lunch and then hitched a ride to Walmart to return some crap I had bought the other day that I didn't end up needing. Took care of some laundry and a little more cleaning and now I'm taking a brake to write this update. Overall I feel like I am off to a good start on being productive. Still trying to control the depression and what not but that's how it goes for a while before you can fully shake it off.

Later on I am going to start working on my latest photography class assignment and then I am going to start working on backing up all my photos from my laptop to CD's that I can store in a case because they are taking up too much room on my computer. After that I'm going to try getting a little more organized with my photo storing system and work on getting into the stock photography business, see if I can't sell a couple photos here and there to make some pocket cash. Who knows, got to try it out or else I'll never know if it's a waste of time or not. Anything would help at this point since the government doesn't really care to help me out.

So how am I doing? Better I suppose. I'm starting to feel that fire inside, that fire that's says "Screw this, I'm sick of this, time for something better, time to make something happen" so I can only hope that that fire grows larger instead of dying out like it usually does because I REALLY need to make some changes, I REALLY need to get my life going. I'm sick of all this crap and I'm sick of MS making it that much harder to survive in this world. I want to succeed, I want more in life, I want to travel, I want to help people, entertain people. I want to stop SURVIVING and start LIVING.

As far as my symptoms are concerned there hasn't been much change but I guess I haven't really talked about that in a while, so here is the "update". Balance is crap... Especially in the last couple of days. Depth perception is a little wacky too. Vision is on and off as usual and the left side of my body has been pretty weak... Fine motor control is not so great and my left leg is still tremoring here and there. Cognitive function is no different in that it sucks. Other then that doing ok: I think that's pretty much all the main stuff.

Final note. While I was walking to get my haircut today wobbling around like a drunkard I was thinking back to that one great month I had: Camping, hiking, offroading, dirtbiking, and so on. What the hell? Why did I get one month of that after the worst of my MS and now almost a year later, I havn't had any crippling exacerbation since the first, and I'm just not getting back to that point. I really don't think I ever will... We shall see, just got to be patient. Maybe once I am fully active again and happier with my life the change in attitude will better my health just enough to get me back out there doing that kind of stuff.

I just need to get some income and a new car so I can start being active again and hanging out with someone besides myself everyday. Start putting money aside to plan little trips and big trips. See movies, go out to dinner, all the things that make me happy. I hate being stuck in the house, it is the ultimate source of my depression. I NEED change and I need it NOW.

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How Do You Know If You Have Secondary Progressive Multiple Sclerosis (SPMS)?

Today I was asked a question that I myself was asking not too long ago. How do you know if you have secondary progressive MS? I asked my last neurologist this furring my last visit and he was unable to answer my question... If I had to guess, I would say he didn't even really know how to define Secondary Progressive MS let alone diagnose it... So allow me to briefly explain:

Secondary-progressive MS (SPMS) 
About 50% of people with Relapsing remitting MS Develop SPMS

Secondary-progressive MS typically develops from RRMS over a gradual period of time, 10 years on average, but the numbers can vary anywhere from 2 years to 40 years. People with SPMS experience less relapses but gradually obtain more permanent symptoms.

So basically, when you have SPMS you slowly get worse over time. Some people may experience relapses and other may simply just get worse gradually. But how do you diagnose Secondary Progressive Multiple Sclerosis? I did some research and my reading revealed my suspicions to be true. There is no concrete way of diagnosing SPMS... It's pretty much up to your neurologist to make the call... There are probably lots of people out there who have SPMS but haven't been diagnosed as an SPMS patient because there are so many factors that can cause you to think you have SPMS when in actuality you may not... Also because some neurologist might not really know how to diagnose you with SPMS...

According to an article by the MS Society, most neurologists want to see about 6 months to a year of steady deterioration before using the phrase "secondary progressive" but this is a tricky amount of time considering it can take some people between 3 and 6 months, sometimes longer, to fully recover from a relapse... It can be especially hard to know for sure if you are steadily getting worse if you are continuing to have relapses causing your overall health to look like it's simply getting better and worse, better and worse, when in reality it may be getting better and worse, better and then a little more worse each time around...

Neurologists will also want to make sure that your worsening of symptoms is actually a neurological issue and not related to other factors such as depression, lack of exercise, or menopausal symptoms which can all lead to an increase in MS symptoms.

So what's the verdict? Well if you ask me... It's just a label that your doctor can choose to give you or not... Whether you have the label or not your health will remain the same because there really isn't any different courses of treatment you can take... So either way it goes, the goal should still be to remain as active and healthy as possible. MS is too unpredictable for you to worry about what kind of MS you have because really there is only one kind of MS and that's the kind of MS that sucks.


Source: http://www.mssociety.org.uk/doc_store/SecondaryProgressive.pdf

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Major Motivation Issues

You might not really guess this but I have always had some major issues with motivating myself to succeed... I can never get myself to get up and actually do something unless I have someone else working on what ever it is I want with me. There are of course exceptions to this but for the most part this has always been a major issue for me and MS sure as heck isn't helping... It has always driven me mad but now that I have MS as an additional weight on my shoulders and now that I am in a position where I feel as though my level of success in life has been steadily declining it's only making me crazier and crazier.

It's no secret that I'm not happy with where I am in life... I have no job, no car, no long term goals, no money, nothing. Everyday I grow less and less content with my situation at home which should push me to work harder to succeed, to move on, to achieve a greater life, but no... For what ever reason no matter how crappy of a day I have I can't seem to get myself to say "This is enough, I am going to make this change". Why is that? I always read about these great success stories where people went from having less then nothing to making millions because they simply had enough and strove for success. It makes me mad because I have all the necessary opportunities in life to succeed just as well but I can't seem to grab hold of any of them. JK Rowling, write of the harry Potter series, was a single mother on welfare who wrote her first book on an actual typewriter... Now she is one of the richest woman in the world and why? Because she want out of the spot that she was in, she strove for success, and she got it.

One of my major endeavors is to finish my novel and get it published whether I get paid or not. I originally set the goal to see if I could actually do it, to see if I could set a goal and take advantage of my opportunities in life and make something actually happen. I am disabled, out of work, pretty much out of school, have a computer to type with and all the time in the world, literally... Yet... Still I am sitting here staring at the wall, staring at the ceiling, not writing... Why? I don't know. Every time I sit down to try and write I just get really depressed because I can't clear my mind of my life problems and focus like I should which brings about sever writers block. Then I acknowledge that this is happening and it makes me even more frustrated with myself which leads to a deeper depression... What a vicious cycle...

So what do I need to do to change this? I'm about to turn 21 years old, I need to be able to get over this already and get myself to actually do something with my life. I shouldn't be this broke without a job and car or the slightest idea of what I want to do with my life. This book I am writing is still a test, the first step in pushing myself to do something because if I can't get myself to commit to something I enjoy doing, that I am not being forced to do, then how will I ever succeed in a life that demands so much effort to survive? I am going to try and start some kind of routine tomorrow. Wake up, work out, shower, walk to Starbucks, and write. I don't know how long the weather will be cool enough for me to walk but hopefully it will last about a week because if I set my schedule right and work really hard I can finish my second draft by Friday. I'm just a tad nervous about a 45 minute walk when my health has been so unpredictable... I think I really need that feeling of accomplishment to give me a little boost and I think it's going to take much more structure and discipline to achieve that, I just need to push myself to maintain my commitment...

If anyone has some advice on self-motivation please share it with me, I would greatly appreciate it. This is something that many people probably deal with for many different reasons so the sooner I can figure my issue out the sooner I can try to help others. Thanks!

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Interview: How Youtube is Used by Multiple Sclerosis Patients

I recently sat down with Karin (Via Skype), a graduate student at the Catholic University of Leuven (Leuven, Belgium), who is working on a masters degree in social and cultural anthropology. She had a few questions for me about how people with multiple sclerosis use YouTube as a means of seeking support and information.

Part 1

Part2

Part 3

Part 4

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Progress Update: Yesterday was Horrible

The title says it all. Yesterday was horrible! Crap! I knew from the very beginning my day was going to suck because when I woke up I sat up in bed and let my head drop down in the dark. I was so tired but I knew I had to get up! Then I felt something wet on my leg... I stayed still wondering what the heck I was feeling. Drip, drip, drip... It got faster and faster and so I put my had down in front of the thin stream of liquid that was falling upon my leg and realized that it was coming from my nose... It was blood. I have only had a bloody nose once in my life before so you could imagine why it took me so long to figure out what the heck was going on.

So I jumped up holding a puddle of blood in my hand and carefully flipped on the light to my room. I grabbed a bath towel and let it soak up everything it could from off my hands and face. As I stood there holding my nose with my bloody bath towel I realized I had also got blood all over my blanket and dripped a bit on the carpet... Great... That's NEVER going to come out... After a while it finally stopped and that was that. What a great way to start the day!

As the day progressed I started getting really achy... Not muscle aches but joint aches... Much like when I got off my Prednisone for a while... My shoulders hurt, my neck, my elbows, my lower back, and my knees... Everything... It got to the point where I couldn't even sit in one spot comfortably... It was so painful... Finally I cracked and gave in to the pharmaceuticals... I hate using pain killers because they can get so addictive if your not careful but I couldn't help it... I popped a couple of Norcos (Vicodins) and half an hour later I felt fine. Fine might be an understatement haha but let's just leave it at "they worked". I have no idea why I got all achy out of nowhere but I hope it doesn't come back. Today I feel fine so it must have just been something random wether it had to do with my MS or not.

Today I made sure to wake up at a decent time rather then sleeping in as that tends to make me feel yucky all day. I got up around 8:30am and ate a light breakfast, took my pills, and worked out for about half an hour in our home gym. Did some walking on the treadmill and then some light weights. After that I showered up and gave myself my daily shot while watching last nights episode of the Daily Show with Jon Stuart. Haha... Bin Laden... Hmmm... I'll try to avoid the politics here on this blog...

Today started off much better then yesterday. I have been much more productive as well. Yesterday I did nothing and today I was able to set up my apointment for my next MRI (on MOnday) and I have been working on my photography assignment all day. Thats what the random picture is above, just one of the random shots I have taken so far for this assignment which has to do with capturing motion. No post production allowed: Can only use the camera functions haha so yeah, a little rough, but that's how you learn.

Anyways I forgot to mention, my left leg was really weak yesterday as well. It kept buckling in every once in a while as I was walking around. I didn't trip or fall but man did it make walking difficult! Today I feel much more well balanced, not great balance, but good compared to yesterday. My leg feels a bit stronger too. I'm hoping that if I keep getting up at a decent time and doing a quick workout in the morning that my days will continue to go well. I'm going to try my best to make this a routine.

Well got to get back to my photography class assignment plus I have some more writing to do today, got to finish the latest draft of my novel already! Taking me way longer then it should!

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Multiple Sclerosis and Fine Motor Skill Loss

The human hand: one of the most precious and most commonly taken for granted body part we have. We use our hands to work, to play, to communicate, to feel,  and even to help express our emotions. Unlike other limbs on our body our hands operate on a much more intricate level both mechanically and neurologically. The complex system of tendons and muscles that make our hands work give us what is known as "fine motor skills".

"Fine motor skills are the coordination of small muscle movements which occur e.g., in the fingers, usually in coordination with the eyes. In application to motor skills of hands (and fingers) the term dexterity is commonly used." -Wikipedia

What does this mean? Well more simply put, fine motor control is what allows us to type, hold a pencil, button our pants, or even simply pick up and hold an object. You know how they say "you don't know what you've got til you loose it"? Well that couldn't be more true when it comes to fine motor skills. It's amazing how many little things become complicated tasks when you loose your fine motor skills in even just one hand! Typing becomes near impossible, holding a pencil proves to be more then frustrating, buttoning your pants brings you closer to an emotional breakdown then anything else you have ever experienced, and simply holding a glass of water brings about more stress then holding a ticking time bomb.

There are many different situations and medical causes for a loss of fine motor skill but of course I will be talking about Multiple Sclerosis (MS) and specifically the effects of fine motor control loss in the hands. As explained before, Multiple Sclerosis can cause many physical complications as a result of demyelination and possibly even nerve damage. This prevents electrical signals sent from our brain from getting to the body parts they need to get to such as our hands. This can result in a loss of strength, sensation, and coordination or more simply put: fine motor skills.

I myself have a lot of fine motor issues in my left hand that get better and worse over time. At one point I could barely make a fist and then for a while I was back to playing the piano! Not only did I have my coordination back but I had my strength back! At this point however I am sort of in the middle of those two extremes. If I concentrate really hard I can make my hand do what I want it to do allowing me to carry out certain tasks such as typing or even playing some simple tunes on the piano. However, if I get to comfortable and stop focusing on my fine motor skills my hand grows limp and all coordination goes out the window. I start hitting the wrong keys and will occasional loose grip of something as light as a glass of water.

This is very frustrating to me personally because I have always been a very "hands on" kind of guy. I have always used my hands for artistic purposes weather it be for drawing, playing music, building, or sculpting and now those things that once came so easily to me are sometimes not always possible. It's an odd feeling to look down at your hands while your trying to play piano and not be able to make them play a tune that you once were able to play with your eyes shut! Its almost like looking at someone else's hands trying to will them with your mind to play a song. It just doesn't feel right...

Even more frustrating has been my doctors reactions to my claims. As I just mentioned, if I concentrate really hard and make a conscious effort to use my hands I can, at least right now that is. So as a result of my ability to sometimes carry out intricate tasks my doctors don't understand or believe that I am having a hard time with daily tasks such as brushing my teeth, doing my hair, or making breakfast. I can touch my finger to my nose so clearly I am fine right? Wrong. When we are in the middle of our stressful, hectic, lives, we don't always remember to focus 80% of our attention on making sure our house keys are firmly gripped between our fingers. It's a really frustrating thing when you are droppings something every two seconds.

Now here is where I can go in two directions. Depending on the individual and their current situation they may or may not be in a position to carry out certain tasks no matter how hard they focus their attention on it. So for someone like me I think it's important to keep moving! Practice exercises that help stimulate fine motor skills. This is where an occupational therapist (not to be confused with a physical therapist) would come in handy. An occupation therapis's job is to help you learn how to continue your daily activities or "occupations" with your disability. They might have you carry out certain exercises such as screwing nuts onto bolts or manipulating clay between your fingers to help build muscle strength.

For anyone who is not quite even able to do as much as someone above my advise get's a little weak... When I could barely move my hand my doctor told me trying to exercise it was pointless because the issue was a result of demyelantion... It was a nerve thing. I refused to sit around and do nothing though... I was playing with a barrel of monkeys and continuously manipulating my fingers how ever I could. I don't know if it helped in the long run or not but I don't think it necessarily hurt. I believe the human body is a little more amazing then most people think and in certain situations you can make it heal in extraordinary ways. You might not get everything back but surely exercising with your disability will help you learn how to carry out old tasks in new ways. So again my advise is to keep moving

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My Thoughts: I'm Sick of being Tired and Tired of being Sick

NOTE: Please excuse any spelling or grammar errors... 

I am not myself right now and writing is kind of hard.

Lately I have been finding myself falling deeper and deeper into a pit of depression... My physical health is not getting better and possibly getting worse... Typing is not so easy physically or mentally... If I'm not missing keys with my fingers I am typing nonsense as a result of cognitive "fog". I'm not even a paragraph in and I have already hit the delete key more then I have hit any other key... It's REALLY frustrating... I think I am going to have to start using the voice recognition software again pretty soon depending on how much patience I can maintain.

Anyways, depression... I haven't had to deal with this in a long while but of course it's back. I can sit here and complain and complain all the while simultaneously rationalizing reality causing even more emotional contradiction within myself. I feel like I am nothing more then a vessel of conflict waiting to burst. Sometimes I feel as though I am going to just crack and loose my mind causing my body to collapse into a vegetative state of being. Please pull the plug if that ever happens, because I DO NOT want to be a vegetable.

I know I need to get a hold of this depression as quickly as possible as always because depression gets in the way of everything preventing me from being functional in any way shape or form... Depression is even making taking my medicine hard. I have been waking up staring at my needles just hating life. I am so sick of sticking myself every day... So sick of swallowing those nasty Prednisone pills. I'm sick of all of it! I hate my routine of existence, surviving, day by day. It all feels so pointless. I want purpose, I want to feel like I have something to wake up for and I want something to show for my success at the end of the day. Right now I have nothing. No job, no real schooling, no passion, no nothing. I'm just killing time.

I wanted to focus more on my blogging and writing but it's been so hard to stay focused enough to accomplish any writing. It's hard to want to write when your fingers won't move the way you want them to and your brain won't spell the words your thinking of. I try to be active and complete simple tasks like cleaning or building small wood projects, something I always enjoyed. Lately I just can't. Today all I had to do was take apart a few 2x4's from a while ago that were screwed together with a few deck screws. This should have taken 30 seconds but my depth perception is so off that it took me for ever to just get the stupid drill bit into the screws... I was tripping over nothing, loosing my balance, and overall, loosing my mind.

I am tired of being frustrated! I want to have control over my body again! Sure I look OK and I bet every doctor I see thinks I'm full of S**T but I'm not! Ask me to walk a straight line and I can do it but when I'm simply going about my business not thinking about walking, not making a CONSCIOUS EFFORT to maintain my balance I am constantly tipping, tilting, leaning in to walls, and walking a crooked line. I hate it. Unless I video tape myself all day everyday for a week I don't know how else I can get doctors to believe that there is something wrong with me because for the most part I can force myself to do anything asked of me but that doesn't mean I could maintain that effort all day! Everything exhausts me! I hate it!

Worst of all I'm lonely. I have no friends to spend time with and at the same time I can't get any space to myself here at home. It's like dying of thirst while having to go to the bathroom so bad you feel like your bladder is going to explode. Horrible... I really feel like I have no life, honestly, I do. I hate it. I want so much change right now but I can't do anything but wait. Wait around and do nothing... Just continue killing time and continue feeling like the world looks at me like some lazy guy using his so called disability as an excuse to not do anything.

I just wish I knew what to do.

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