The End of the World Will Have to Wait Until Next Year...

2010-07-28T19:23:00.000-07:00

Maybe my self confidence is taking me places I shouldn't go. I don't know. Yes, I've been working out. I feel stronger, more nimble, and maybe even more attractive. My psyche has also improved, perhaps beyond where I should stop. I'm not talking in the physical sense. I'm talking the emotional, the relationship sense. I recently thought a young lady was attracted to me. I guess she was. I thought I received signals. I asked. She said yes. We went out. That should have been the first step.

Right now I am sitting here thinking it might have been the last. I have called her twice since the date and emailed her. She didn't pick up her cell. I left two very brief messages such as, "Hi! It's Paul. I'll talk to you later." I'm not good at leaving messages. Two days since my two muffed messages and email, and no return call or email. Now, I'm stuck as to what to do.

I think tomorrow I will try again, with the phone. Only this time, if she doesn't answer, my message will be more like, "Hi, this is Paul. I'm sorry for my short and seemingly detached previous messages. I suck at messages. Please call me so I can try again...." or something like that. If that doesn't work, it's onto someone new. BTW, I didn't tell her about my having MS. She didn't detect anything, I don't think. However, she knows some of my friends and she may be suspicious because I did tell her about my brain biopsy....uh-oh! Was that bad?

Been Running Fast and Free....

2010-07-20T22:05:00.000-07:00

Where have I been? I must have been trying to forget about MS. Can't do that, though...go figure.

I'm okay. I am feeling good. I am trying to beat the feeling of MS by eating better and exercising. We're having a Biggest Loser Competition at work and, not expecting to win, I joined up. Really, I am not heavy, but I saw it as incentive to get on an exercise plan and firm up the middle. You see, I have this incline bench, kinda like the one that Chuck Norris pedals, but different. So, I hauled it out of my "Everything Room" and dusted it off. I knew if I left it in there, I wouldn't keep using it regularly. So, I plopped right in the middle of my living room and there it sits and calls to me every time I walk by. "Hello, Paul! Don't trip over me... why don't you stop and knock off a few curls, big boy!" it calls to me. Here it is almost midnight, and I'm sitting here sweating, typing, telling stories about my talking incline bench right after a workout.

Well, my strategy is working. I have been going at it for a good 8 weeks now. Now, I'll give you the straight scoop about my weight. Nothing to be ashamed about. Before I started, I weighed myself and I was 217 lbs. Now, this is before the Biggest Loser Competition started. I wasn't happy with that weight, so somehow I subconsciously lost 5 lbs before we started! So, I put myself at a pretty good disadvantage right at the start, because I only have so much weight I can lose. Did, I say I wasn't really serious about winning? To summarize, Week 1, I was 212.2. That's my official starting weight. This is Week 8 and I'm 205. That is a modest loss, certainly not award winning. But, if I could have held my 217 lb weight for Week 1, then we would be talking. The good news is I like it! I like the feeling of losing some stuff around the middle and I like the feeling that I am stronger at the same time. And, keep in mind, I'm 6'-3", so I'm almost getting hunky, if that is possible for me!

Okay, I'm alive, I'm okay, and I'm not as bad on the eyes as I used to be. I think I'll keep this up. I have lot's of reasons why, which I will write more about in the near future, now that I have found my blog again....wink!

Information on CCSVI Liberation Treatment

2010-04-08T20:34:00.000-07:00

I learn something new each day! Liberation Treatment is what they are calling the procedure that Dr. Zamboni has pioneered to treat MS patients who are also diagnosed with CCSVI. And, here is a link to a website that has names of surgeons that are performing it! It was just a couple days ago that I applied for the BNAC study and decided to track down surgeons that could perform this procedure. Now I know what the name of it is. It is Liberation Treatment! Also, when you go to that website, you will see they have information on a clinical trial in Albany, NY. I am signing up for that, too!

National MS Society - Encouragement or Discouragement?

2010-04-06T10:00:00.000-07:00

What kind of support are we people with physician-diagnosed MS and possible undiagnosed CCSVI getting from the National MS Society? I have a personal experience. I recently went to the National MS Society website to view their FAQs regarding CCSVI (link here). I encourage you to go there and read it to get your own take on the subject. What I got from it was the NMSS doesn't deny that there may be something to recent news and developments regarding CCSVI, but they sure don't come close to endorsing it. They say they are openly looking to provide grants for research, but they don't disclose how much. There is a lot they don't tell us, but it is clear that they do tell us to not jump on the bandwagon. I'm sorry, but I can't do that. One of the positives from the NMSS was a link to the Buffalo Neuroimaging Analysis Center (link here) where they are starting a Combined Transcranial and Extracranial Venous Doppler (CTEVD) Evaluation study. I have submitted my application for this study and await their further communication to see if I will be accepted. You should check that link out, also.

The NMSS calls Dr. Zamboni's procedure for clearing vascular blockages "experimental endovascular surgery." Stories have been spread, reportedly from the NMSS, that MS/CCSVI patients should not travel to Poland or other countries to undergo Dr. Zamboni's procedure for CCSVI because Poland is a third world country, or because many people have died as a result of undergoing this procedure. There are varying degrees of responses to this. Here is a story by Ginger, an MS Blogger who went to Poland to have the CCSVI procedure. I encourage you to read it. But, please, read Ginger's entire blog. She is spitting mad at all the MS Societies.Her blog goes more fully into some of the events she has experienced that relate to the Canadian MS Society. But really, all the MS Societies are related, as you will see when you go to the NMSS website and read how they are all pooling their thoughts on how to deal with CCSVI.

My recent experience? I just want to get the names of some surgeons in the Houston, TX area who may be skilled or have an interest in the CCSVI procedure. I am not looking for a recommendation and I clearly stated that in my correspondence. The NMSS replied that they would not give me any names of surgeons and suggested that I contact my neurologist to discuss that subject. I suppose I will do that. I just thought the NMSS would be more proactive and supportive. My bad.

So, long story short...I have been talking about CCSVI and wondering aloud on my blog what I should do, writing about it and wondering what others are doing. I am now doing. I hope to get in on the Buffalo experience. Next, I want to find a vascular surgeon in Houston, TX who is on the leading edge of this thing. I wonder what the NMSS would say about that...

Medicinal Marijuana for Multiple Sclerosis?

2010-03-26T13:14:00.000-07:00

Where do I go with this subject?

Have you heard about the New Jersey man who was just convicted and sentenced to jail time for growing marijuana in his backyard? This isn't a joke, so there is no punchline. This really happened.

Now, I don't know if marijuana makes life better when you have MS. I do know it is illegal in most states. New Jersey was one but is no longer. At first look, I can see some things I don't agree with in this case and I have no legal reasoning behind my thoughts. It's just an opinion. The man wasn't allowed throughout the court proceedings to state that the reason he grew the marijuana was for his personal use to treat his MS. I don't agree with that. So the end result is that this man leaves his wife and child and serves a three year prison term. In the article, you will see that he said he resorted to the use of marijuana because he couldn't afford MS treatments because of the cost.

This an opportunity for me to say to anyone reading this that Betaplus, the distributor of Betaseron currently charges $0 per monthly supply for Betaseron, regardless if you have insurance or not. That is a fact. I know because that is what I pay. But, that is not the point. Actually, based on what I just stated, I would have made a good witness for the prosecution.

No, the short story here is really many stories. Let me list a few that come to me here. (1) A man with MS felt that he had to disobey the law in order to improve his condition and he will now spend three years in jail for that. (2) A man with MS thought there weren't inexpensive conventional medications out there to treat MS and there are. (3) A man who was using an unconventional medication to treat his MS will now get all the free conventional medication for MS that the state of New Jersey can afford, in jail. (4) Marijuana is not considered medication in many places in the US. (5) Medical marijuana is now legal in New Jersey although the passing of that bill came too late for this man. (6) Why can't the Governor of New Jersey now commute this man's sentence and release him now that medicinal marijuana is legal in New Jersey...especially since that man wasn't even allowed to say why he used it in the court proceedings?

Seems like a slam-dunk case to me....

Brass and Ivory: Talking to Your Doctor

2010-03-22T07:45:00.000-07:00

Our friend Lisa Emrich, who is probably the greatest MS blogger ever continually keeps us informed on all developments regarding MS. She is busily blogging 25 hours a day! You know her from her Brass and Ivory blog and Carnival of MS Bloggers blog, and I probably left some out. You can find her down on my "Proof That I'm Not Alone" sidebar. Anyways, I am providing a link to a blogpost she made recently regarding Talking to Your Doctor. Here's the link:
Brass and Ivory: Talking to Your Doctor

So, to explain, I don't like my MS doctor and I have been intending to switch doctors for the longest time. But I haven't and I blame it on me. Long story short, I need to get off my butt and either schedule a visit with my doctor or get a new one soon. Lisa gives us some very valuable tips in the linked blogpost, above, on how to prepare for your next doctor visit. Plus she has a video to help you do it! I'm making my list now.... Thank you, Lisa!

MS Blog Aware

2010-03-20T08:54:00.000-07:00

If my last blog entry made it sound like I was living in my own little world, and a bit despaired to say the least, then I think this story will put some light on the subject. I started this blog for a number of reasons. One was for my own personal form of therapy. Having the opportunity to put my thoughts into words, I have to admit, had it's appeal. I also, saw an opportunity to communicate in some way with other people who were feeling the same way as me, physically and mentally. And, I wasn't sure that I was doing that, because, while people visited, they never commented. I thought visitors were coming and leaving, never to return. Plus, this being my birthday and being alone, I guess I was definitely looking for some communication. Well...after what just happened, what a fool I feel like, but if I don't communicate this story, I would be fooling myself even more.

I was talking to my wonderful friend Gloria. She was trying to cheer me up and I was talking about how no one ever leaves me comments. She said, "I tried to leave you a comment, but it won't let me!" So, she tried, and she was unable to figure it out, so I went into the settings and I saw this thing about emailing me when I get a comment. So, I entered my email address and saved the settings. Wouldn't you know, I start getting emails and there's about 20 comments waiting for my approval! I couldn't believe it! So, I approved them all and what a gift on my birthday! This has really made my birthday special!

So, thank you to my friends! Thank you, all!

Cheer Up, MS Has Me on My Birthday...

2010-03-20T06:12:00.000-07:00

When I was told that I had MS...let's see who told me, I think it was my parents who told me, or the nurse...kind of foggy on that. I wasn't really expecting it. I was expecting news of a different sort. It could have been the doctor. Yes, it was probably the doctor. Or my parents. I guess it will remain a mystery.

Why can I not remember? Because I was in the hospital for a brain biopsy and being in a drug induced haze while losing a part of my gray matter might have had an effect on my memory? The doctors looked at my MRI and thought brain cancer. I had no fewer than three neurologists from three different institutions look at my MRI and they all said the same thing. You need a biopsy. None of them ever suggested MS and getting a spinal tap done. I call it a spinal tap. Neurologists like to call it a lumbar puncture...probably because of the negative connotation of saying - spinal tap, as if calling it a lumbar puncture is supposed to sound so innocuous and make you feel at ease about it. But, eventually I went through that procedure, too, and believe me, it is not pleasant, so spinal tap, it is.

So, back to the brain biopsy. I can always recount the details of my spinal tap some other day. The day of my brain biopsy was the first time someone suggested MS. It wasn't cancer. Yippee! It was only MS! So, instead of six months of rapidly declining health followed by certain death, I had an indeterminate amount of time to contemplate how it would all end as my health slowly but surely declined at a rate slightly quicker than old age.

So, today I write. Am I cheering you up any?

Today is my birthday and I will spend it by myself. I have no loved one in my life. I have a dog, who appreciates that I feed her and pet her and keep her warm at night. That is not wasted on me. But, I will go though this day and no one will give me a hug. A phone call will have to suffice.

Having MS has held me back. I am lacking the self-confidence to start a relationship with anyone. Not knowing if sometime in the next year I will become wheelchair bound is a hindrance to me. There are other reasons, too, but MS is such a convenient excuse for me. If I don't want to do something, anything, its the MS. I don't treat people badly, don't get me wrong. MS just makes it is just so easy to take the out.

So here I am, by myself. Me and my blog. Talking to talk. Writing to write. I suppose I could put on my happy face and tell you how nice the sun is this morning. But, I would by lying and what is the sense in writing in a blog if you aren't telling the truth? I could say its the MS and I wouldn't be fibbing at all, but surely that isn't everything. I'm feeling alone today. Its just me and my MS coming to you. I am such a liar!

Aren't you glad you stopped by?

Say Happy Birthday, Paul.....

Everyone is doing something about MS and CCSVI

2010-03-16T12:59:00.000-07:00

Look around you! People are acting and reacting! It makes so much sense that there is a link between MS and CCSVI.

Some are taking the leap and starting to receive CCSVI treatment for symptoms that are shared with MS. Here's someone who can't get the treatment in Britain, so he travels to Poland to get it. Here's a woman, also from Britain who has gone to Poland for the CCSVI treatment and received positive results. Another person with MS/CCSVI symptoms from Canada is traveling to India for CCSVI treatment.

Meanwhile, people with MS are out there advocating. Here is an excerpt from a typical comment regarding an MS/CCSVI article,

"I am going to Buffalo, N.Y., to participate in the research conducted by Dr. Robert Zivadinov. While I have not been chosen to participate in one of the clinical trials, Zivadinov has opened his clinic doors to people around the world suffering with MS to be tested and potentially diagnosed with CCSVI.

I will not let our government, our doctors or the MS Society tell me to "wait and see." Life is just too short to "wait and see."

To others with MS, I suggest you sign up for the diagnostic tests in Buffalo. Raise the money for these tests as I am, through various fundraisers and donations. We need to come together and work with one another to advocate and to actively get tested for CCSVI. This research just could be the answer to our prayers."

I think those are inspirational words.

But all is not well, as some that have received the treatment in the US have not fared well, with one patient having died.

So do you have MS? Does someone you know have MS? Is time on your side?

What are you doing? Are you a doubter? Are you a believer? Are you a wait-and-seer?

Nobody Knows What MS Is Week??? March 8-14

2010-03-08T07:13:00.000-08:00

Folks, can I have your attention for a moment?. This is coming from me and not some clinical physician who receives grants to run tests on patients with MS; not from some pharmaceutical company that profits from selling drugs to patients with MS; this is me, a person with MS. Okay? Read on, please...

Let me just say, thank you to the National MS Society; an organization that is made up of concerned people who really want to figure this whole MS thing out. That being said, it is important to me to try to make society aware that MS is still not an explained illness! Look over on the left side of my blog and you will see the history of MS. The medical definition of MS has changed, but it is clear to me that, what it is, has not changed. So guess what? That is my message to anyone and everyone who reads my blog. Nobody knows what MS is. I am stating very clearly, right now, MS is still not understood! If that is what MS Awareness Week is about, then that is the first step in figuring the whole MS-thing out. We have to fathom that fact. Nobody knows what MS is! Nobody knows what causes MS! Nobody knows how to cure MS! After all these years and all this research and all this money that has been raised and all this money that has been spent; nobody knows what MS is! That is a fact!

So, what are you going to do during MS Awareness Week? Certainly not celebrate. Become more aware? While you're becoming more aware, remember that nobody knows what MS is. Instead of calling it MS Awareness Week, I think we should call it Nobody Knows What MS Is Week!!! With three exclamation points.... MS Awareness Week just doesn't do it for me.

Thank you for reading.

More Than Half of MS Patients in Study show CCSVI-type Blockages!

2010-03-05T15:51:00.000-08:00

Using Doppler Ultrasound, doctors at the University of Buffalo detected narrowing of the veins in the extracranial area (outside the skull) of MS patients that they tested. This study is unpublished but was brought to the public because of the high prevalence of the results. Dr. Robert Zivadinov, the principal investigator, claimed that people should have "cautious optimism" that these significant findings will aid in the ongoing research in linking multiple sclerosis with CCSVI. I am ecstatic to hear that this research is being done and patiently waiting for when the medical community can go forward with making the link official and developing useful and common procedures for us all.

There are Risks to CCSVI Treatment

2010-03-03T21:50:00.000-08:00

This is the first I have heard of it, but it appears that the treatment that Dr Zamboni has pioneered to treat MS/CCSVI has not been perfected by others. Evidently, doctors at Stanford Medical Center were performing the treatment, which involves stenting the jugular veins in an attempt to increase the blood flow from the brain, ended badly for two patients. At this time, Stanford Medical Center has ceased performing the procedure.

Update on the Link Between CCSVI and Multiple Sclerosis

2010-02-24T12:57:00.000-08:00

Tears are coming to my eyes as a write this. I don't know if it is the softening of my mental faculties due to MS, my own fragile emotions or a combination of all of the above; but, I just came from the National Multiple Sclerosis Society website and I am happy to report that someone has heard us! SOMEONE HAS HEARD US! And now, so much hope comes with it to all the people in the world diagnosed with MS!

February 9, 2010 - UPDATE: National MS Society leaders met with Dr. Zamboni today in advance of his invited lecture at New York University’s MS Center of Excellence. In meetings and during today’s presentation, Dr. Zamboni suggested that if further evidence supports the link between MS and CCSVI, that its treatment may ultimately add to the arsenal of therapies available for MS. He emphasized the need for more research on his hypothesis, and noted that it is still not proven whether CCSVI is a cause of MS or possibly a product of MS. Dr. Zamboni also noted that people with MS should remain on their immunomodulatory therapies as has his wife after her endovascular surgery.

The Society shares in the public urgency to expeditiously advance any lead that has the potential of stopping, repairing or preventing MS.

Is there anything fun about changing health plans? NO!

2010-02-20T06:32:00.000-08:00

Okay, let's cut right to the chase. I will leave out the names to protect the guilty. In December of last year, I received a notice from the insurance company that runs my company health plan. I received that notice BEFORE they notified my company! Seems they wanted to stop doing business in the state of Texas, which in itself is pretty astounding because Texas is probably weathering this international economic storm as well as any state. So, the powers that be at my company scrambled to find a replacement insurance health plan and they did quite well and come January 1, I was on a new health plan. I opted for the savings health plan, which has me donating each month toward a balance which is used toward my deductible when I require health services or a prescription. Sound familiar? Okay. So, in December we had an orientation meeting with the insurer and I discovered that Betaseron is not one of the prescription pharmaceuticals covered on the "approved list." So, I brought that up to the rep after the meeting and I was told not to worry, that she would look into it. About three weeks later, I still hadn't heard, so I make the call. She calls back a couple days later and guess what? Betaseron is approved and all I have to do is contact the mail order pharmacy to get the paperwork done. Let me give you the brief and almost unbelievable rundown on Betaseron. Betaseron is free! Normally it is no more than $50 per month, but effective last September, due to the economy, BetaPlus declared that Betaseron would be NO COST! As I just described it, would you say you understand what I am saying? Do I need to say anymore than that? Betaseron is no cost. That's right. You got it. Well, it wasn't so easy for the insurance company to understand. At first, I received a call from my doctor office and they said the the insurance company had denied the prescription for Betaseron. I say that's impossible because I did all the footwork up front. Well, a phone call to my insurance company rep was the next step. She said, no, you weren't denied. That's impossible. I give everyone each other's phone numbers; the insurance company, the pharmacy, the doctors office, and BetaPlus and I tell them to figure it out and call me when it is. Two weeks later, my insurance company rep calls and says, "I have good news, You are cleared for takeoff. And, the cost is $2,500 deductible and $50 per month!" I said, "No. Betaseron is no cost to me." She said, "No, your plan says $2,500/$50." So, I get my HR assistant involved and she says, "They're right. I can't help you." I said, "I know what's right and that isn't it. Thanks anyways." So the head HR person comes to my office. I give her the story and she says she understands that Betaseron is supposed to be no cost and she will try to help. I thanked her, because I was busy at work and didn't have time. By the end of the week, she emailed me with the message that she made no headway but she is working on it. After a couple sleepless nights on the weekend I figured out what I had to do. It was obvious to me that the insurance company was not hearing the message that BetaPlus said that Betaseron is no cost. I had to do something to kick the insurance company into gear. I had to hurt the insurance company where it hurt the most. Monday morning I called the insurance company rep and told her that in one hour I would be canceling my participation in the company health plan and I would contract for the Betaseron with BetaPlus myself, because as I had been telling her, with insurance or without insurance, the cost of Betaseron is $0. Well, that was the last thing she wanted to hear, because you know, the insurance business is not a money losing business. My company pays a lot every month for me to be a member of that health plan. I pay a little, but the lion's share is paid by my company. Within 30 minutes, my insurance company rep called with the news. "I don't know how it happened, but BetaPlus has agreed to pay for the deductible and your monthly cost is $0!" I just thanked her, but I hung up the phone knowing that they had never called BetaPlus until just now. Can I blame them? I don't. I realize that the people who work at the insurance company have processed many thousands, maybe millions of clients and they had no perception of anyone getting their prescription filled for $0. They had probably fielded so many calls from people thinking that the plan they signed up for wasn't supposed to work like that and they had no idea it would cost that much. There answer was always the same. "That's the plan you signed up for." A prescription for $0? That was totally out of the box thinking for them. So, they didn't even try until they were forced to, by my threat to cancel them. So, yes, I laughed after it was all said and done, but it was not a laugh that indicated that this was fun. It was a laugh that I was right and because I was persistent, it all turned out the way I had been telling everyone. They just weren't listening.

Is MS really MS?

2010-02-18T21:25:00.000-08:00

I am not so sure anymore. Since I was diagnosed, I have looked into it. No matter how hard I try, I have never been able to trust doctors completely and realizing from the beginning that they really didn't know what caused MS, doubt set in upon me on the medication that was being prescribed. Recently, my doubt has grown even more. Perhaps I am the last MS diagnosed person to find out about Dr Zamboni and his findings. Perhaps not. Anyways, from how I understand it, MS is merely a symptom of something that isn't really a immune condition at all. What we are all subject to is a vascular condition where the blood flow from your brain and spine is constricted due to narrower than normal veins. That causes iron to collect there and allows the blood-brain barrier to be permeated and that is what causes the brain and spine lesions. Yes, maybe your legs feel numbness, but do they also feel heavy? Is your stamina down? Does it all make sense to you? It does to me. I want to know what is being done in this country to get this going? Dr Zamboni has pioneered a procedure similar to angioplasty where he expands the diameter of the veins. He has had incredible success. However, his success has been in Italy. I would like to know if there are doctors in this country who are going to Italy to learn what Dr Zamboni is doing.

"SUFFER" from MS?

2009-09-26T09:15:00.000-07:00

Is my MS so bad that I suffer from it? It has held me back at times. It has weighed on my psyche. Fatigue, heat, loss of balance, wonky eyes, tingling, moments in the restroom...those are all symptoms that I have. I prefer to think that I am learning to almost block them out. Sure, I stop every now and then and take inventory to see how I'm doing. But, for the last year, the symptoms have not worsened, and I have proven that I am still able to function in my business world. If people don't already know, and I don't tell them, they would not know that I have MS.

I know we all deal with our MS differently. I know our MS is different from individual to individual. Our support group's are all different. I live with my dog and no other family members. My nearest family is over 900 miles away. How do I do it, I ask myself sometimes. I am not debilitated, but knowing I have a disease that can be debilitating can have an emotional effect; which again, we all deal with in our own personal and individual way.

Lately, I have spent more time trying to do the things I want to do, whether I feel fatigued or not. I do them and I concentrate on overcoming the physical and emotional fatigue that I feel; mind over MS, I call it! I give myself a personal pat on the back for doing it and I feel joy and accomplishment. It takes pushing. Having the idea to do something is easy. Planning to do it, still easy. The last step; actually going through the front door out into the world to do whatever you have planned, that is the biggest hurdle for me. Over the last year, there have been many events I have planned for, only to stop at my front door when the time came. It was easy for me to blame it on the physical fatigue of MS, but really, it was the failure of my mind to win that battle.

I guess, I am writing this because I have been out reading other people's blogs and I read where someone said, "I suffer from MS." And, part of me wanted to disagree with that statement. But, I don't know that person. I don't know how bad it is for him. I don't know what kind of support he has. And, THAT is why I was out reading his blog. I need to go back and read more, and I will. Right now though, I am here writing and I want to finish. I started out writing this blog entry to say that we shouldn't be "suffering" from MS! The more I thought about it, the more I wrote, the more I knew that YES!, I "suffer" from MS. My life suffers. I let MS get the best of me. It is hard to not let it. I wish all my blog entries could be about how I beat my MS! But, that isn't true. There are many times it gets the best of me. I will have my victories, though. And, I guarantee I will be here sharing them when I get one! MIND OVER MS! I'm not ready to give up...

Well, this was a Saturday morning rambler...

LEUKEMIA DRUG TRIALS NEWS

2009-09-23T13:50:00.000-07:00

Oklahoma tests have concluded and the Director of MS Center of Oklahoma, Dr. Gabriel Pardo, says people with MS taking the treatment had a nearly 60% less relapse rate than those on placebo pills. Okay, so that isn't a cure. (BTW, they don't name the drug being tested in the linked article, but I assume it is alemtuzumab)

Me, I would like them to figure out what causes MS, and then, let's talk about a cure. Treatment is nice, side effects aren't so nice, a cure that is something else. Just me talking, now. I think eventually they will know what causes MS and all neurological-related immune disorder diseases and the cure will be at the geno level. It won't be a pill or injection that they can give you. But I have hope and I have some time, so I keep waiting.

MORE OF FRITZ HADRON

2009-09-16T20:48:00.000-07:00

And, why my blog is called:

"The End Of The World Will Have to Wait Until Next Year..."

Well, I really enjoyed writing as Fritz and the few who have read his blog entries have commented positively, so while the anniversary of my MS diagnosis is still fresh, I will unleash some more of Fritz. I hope you enjoy. Yes, some of the stories get a little risque, but it is all innuendo and the stories are as innocent as you want to make them. Enjoy!

Entry 3

What a way to kick off Oktoberfest or should I say, what we were calling the LHC Sausagefest! YES, the celebration BBQ was a rousing success. The two Swiss Robinson twins were killer in drag and quite enthusiastic when the band played the chicken dance. And lab assistant Juanita Riley from the Bronx provided some fine entertainment on the main table. I think we may have experienced our first glimpse of what its like for a black hole to evaporate, if you know what I mean. Now there was some real honest to goodness elastic scattering and diffraction dissociation there, my friends. The forces of nature were colliding forming what the layman might call new hot dense states of matter that could only exist right after the big bang! Higgs bosons and supersymmetric particles were everywhere! BUT, I digress just a tad. An aside to the partygoing... Old Man Evans dropped the key to his Beamer during his ummm, protocol review with lab assistant Jones and we will have to depolarize the cryo magnets for the next week, so we can pry it loose. Yes, we can detect the smallest of subatomic particles in this rat-trap, but we can't do it overnight. Keep pushing the button my friends!

Entry 4

This isn’t going to SURPRISE anyone. There are varying theories about what will happen here at the LHC, cutely named “Halo” by our jealous professionals at the Royal Society of Chemistry in London , but that is another story, AND we completely reject that name, by the way…friggin’ gamers. To get to my point and to make a long story short, we have been fending off this annoying lawsuit filed in Hawaii of all places. Anyways, I am really HUNGOVER from our Sausage festivities the other night and also quite puzzled why my knees are raw, my backside is sore and it smells of turbine oil, but again, that’s another story. I remember some really good times and the times I don’t remember, I think I want them to stay there. Let's just say I'm hanging up the Spam Waitress outfit back in the closet, pun intended. What was I saying? OH YES, I am struggling to keep my mind on this Complaint for Temporary Restraining Order filed by Mr.’s Sancho and Wagner who have this fear that we may be more capable of accomplishing our goals than ANYONE and they have gone on record in the courts to say that we may be creating stranglets, micro black holes, magnetic monopoles and such. Poppycock! Let me say, IF the particle collisions we create were to convert into two massive particles with north and south magnetic monopoles that resulted in the catalytic decay of atoms and protons, AND caused them to convert other types of matter in a runaway reaction AND this resulted in the Earth’s poles reversing/flipping, all that means is that come this February, Punxsutawney Phil will not see his shadow and there WILL NOT be 6 more weeks of winter. Do I hear any applause?... yes, you are very welcome! Where’s the harm! We can just blame it on global warming just like everyone else, and no one is the wiser! We all know they have absolutely no scientific basis for THEIR “wacko” conclusions! Based on that, I’m sure we can get this frivolous lawsuit dismissed. Namaste, my friends!

WHY MY BLOG IS CALLED

2009-09-10T08:35:00.000-07:00

The End of the World Will Have to Wait Until Next Year...

Right about the time I was being poked, biopsied, tapped, brain-scanned and having my wallet lifted for the doctor bills, that resulted in my MS diagnosis; I decided to pen some fiction using the pen-name of Fritz Hadron. I wrote this in the first-person, and as Fritz, I was a free-spirited lab physicist toiling in the tunnels of the Large Hadron Collider (LHC) located in Cern, Switzerland, on the border of France. Basically, the LHC had just fired up for it's initial start-up, but had encountered some serious issues with the huge electro-magnets that line the testing tunnels. I don't want to go all into the technical reasonings behind that, but at the time, there were a few "anti-progress zealots," I will call them, that were fearful that the LHC would be a world-destroyer when it was to finally fire-up successfully, causing a micro-blackhole, stranglet or some other runaway physics-experiment-gone-amok that would suck up all matter as we know it. So, being one of twisted humor and wit, I assumed the personality of Fritz Hadron, speaking to the masses in his blog from his underground lab 70 meters below the surface, informing readers that "the end of the world would have to wait until next year" as the repairs were made to the LHC. It was good therapy for me and the title-phrase I used stuck in my mind as a great phrase to describe my defiant attitude, masked in my own brand of wryness, towards MS. Today, September 10, 2009, one year after I was "officially" diagnosed with MS, I will share with you my first Fritz Hadron blog-entries. Here goes:

Entry 1

The LHC is broke...on the fritz. But, when we get it working again, even if a tiny black hole is formed, a big if, we promise it will evaporate immediately, we think...its in our report. Yes, we have never witnessed a black hole evaporating, but if our theory is correct there will be no fear of an incident. But, look on the bright side. If we can create a black hole, we can probably create a wormhole, too, and we will be able to escape the vacuous attraction of the black hole and humanity can colonize to other corners of the universe.

Entry 2

OK, all is not lost. In order to fix the wire that shorted out the electromagnet; a major embarrassment to us; we have to wait two months for the LHC to warm up from the previously super-cooled temperature below 2K. That's cold! To temper our disappointment, we have been officially recognized by Guiness Book of World Records for the world's largest refrigerator. This is an accomplishment that we are extraordinarily proud of and to celebrate we have scheduled a BBQ for all laboratory personnel. We are determined to not let the 10,000 tonnes of liquid nitrogen and 130 tonnes of superfluid helium (1% of the global annual production) to go to waste. Ten kegs of unfiltered Eichbaum Kellerbier have been placed in Sector 6/7. The first keg will be tapped at 1100 hours and partying will ensue. The theme for the BBQ is anything Monty Python, and that means men are allowed to dress in drag, so the complaints that we have received in the past about "too many guys, not enough women" should not come into play.Should be a good time for all! I'll be dressed as the Spam Waitress. See you in the tunnels!!!

Soul Searching

2009-09-03T20:33:00.000-07:00

Not my own. It's fine. People with MS. I am a person with MS, living in a world without other people with MS. Now that I started a blog, purely on a whim. Just hammering away periodically, telling stories about myself, not thinking about what is next, not knowing how to do it... not really knowing MUCH, I have to tell you.

But, I'm a smart guy and I catch on quick. I quickly figured out some of the rudimentary parts of starting a blog. I delved into the inner workings of the HTML, not knowing anything about HTML, but I delved anyways and figured out how to set up the background. I customized a few things, made the blog format wider, because I know that sometimes I can write a mouthful and if the column is too narrow, well, it will require too much scrolling to read it all. Really, I did it for anyone wanting to read my stuff.

Then I figured out that not many know I am doing this. I started a counter and sure enough, the numbers have been low. So, I went out and found a few other MS blogs. I'm a friendly guy but I'm not always sure how to go about it. I was looking for others in a similar situation. Which brings up my point. I am finding that a lot of MS bloggers seem to be active for a year or maybe two and then they peter out and the entries become fewer and farther between. I wonder why. Just as I get started, others are getting out. Did I miss the wave? Is this a fad that is now on the downside? I must know the answer...

Mind Over MS and I Feel Like I Won!

2009-09-02T19:47:00.000-07:00

I just got back yesterday from four days of self-imposed, risk-taking, thumbing-my-nose-at-MS, outdoors-in-the-unbearable-heat-of-East-Texas-in-the-summer FUN. My brother from another state came to town and we went to the deer lease; a place that provides great release for me. We were on a mission to build a deer blind and not just any blind. See, as you have most likely guessed, I am a hunter and outdoorsman...although, in reality, I prefer to call myself a wild game manager, because I spend more time making sure that the game that I hunt is well-fed and happy with their surroundings. I do this on leased property that belongs to one of the great big paper companies. Hunting and the outdoors is practically a life-style here in Texas. I am one of many that partake in this form of recreation. So, the end purpose of all this is to hunt the game and in Texas you have to do it from a blind. I had plans for a REAL blind. Read on.

Anyways, the three of us (can't forget DD the dog) started out at the airport and we were on the road for our two hour trip to the big thicket. Five hours later, after stops at two sporting goods stores, the gas station, the local BBQ and the grocery store, we rolled in to the camp...a 1950's era rundown trailer with about 4 coats of paint, which by the way, is painted camouflage. Why, I don't know. We don't hunt from the trailer. So, we quickly unpack and put the food up where the mice won't reach it, rolled out our sleeping bags and laid on top of them for some shuteye. Well, we weren't gonna crawl inside them, because the trailer has no A/C, or electricity, or running water and it was still in the neighborhood of 85 degrees at midnight. My brother was sawing wood within minutes as I stacked it.

Morning came soon enough and we were up eating our healthy cereal with soy milk breakfast and OJ. Now, the plan was ahead of us. We were there for one thing only and that was to build a new deer blind. We needed lumber, so off to town we went. We got there and to my surprise, Lowes had something special that they probably only sell in Texas; OSB sheathing with a pre-finished camouflage pattern! How could I resist and it would save a lot of time not to paint it. We loaded the trailer up and off we went.

Back at camp, we painted all the 2x4 lumber and the backside of the sheathing. Then we took the NEW chainsaw that I picked up at Lowes, hehehe, and went out to the blind site to do some clearing. We wore our asses out, I tell you. And, I have to say, I held up better than I thought I would. Plenty of water was the key. We went through almost a whole case of water between the two of us on the first day. Dinner that night was chicken drumsticks roasted over charcoal. That was followed by a shower from a 5 gallon water jug hung in our home-made shower station. Did I tell you we were roughing it just a bit? Sleep came quickly that night.

Day two, and a big country breakfast with home-fried potatoes, venison sausage, eggs over easy and OJ. We always eat good up there! First thing, we loaded most of the lumber on the trailer and hooked it on the back of the ATV. Our trail to the blind site was rough going; too rugged for the pickup truck and actually, I had my doubts about towing a trailer with the ATV, but we had to try it. I don't know how, but we did it. We made it in right up to where we could unload the lumber and build. We built the floor and the legs, upside down and then flipped it into place. That is all we accomplished this day. I left out a few details, but believe me, it was 98, humid, sweat was pouring off of us, and what we accomplished was a lot.

Meanwhile, back at camp, we had a small wild hog roasting on an open fire, slow-cooking, Texas-style!!! It was on the fire by 2:30 PM and we took it off around 8:00 PM; and, if I told you the meat was tender, falling of the bone, succulent and sweet then I wouldn't be exaggerating one bit. I'm telling you, there is nothing better! I mentioned that we always eat good up there, didn't I?

Another shower that night and another hot night lying on top of the sleeping bag praying for a cool breeze. No such luck!

Day three, the first country breakfast was so good we had to do it again...a great way to start out a day when you're going to be out in the hot sun, burning the back of your neck, pounding nails. We went to town this day and built all four walls. We were also able to get all the walls up onto the 8' high floor and tack them in. We now had a square box and it was looking like a blind; actually it was looking better, more like a small luxury, redneck condo in the woods!

Back at camp, we dined on a smorgasbord of venison sausage, cheese and crackers, left over chicken drumsticks, and cookies. In three days of the hot East Texas sun we had managed to down almost three cases of water between the two of us, well three, if you count DD, who was holding up pretty good. DD loves to patrol for mice at night, but after the first day, we were wearing her ass out too, and she was the first one on the sleeping bag each night. That dog!!!

Day four! This was our last day, and just a half one at that. Bro had to get back to the airport by 4 PM and he wanted a REAL shower before he got on it, so we had to get going, so cereal it was for breakfast...no time to be a country gourmet this morning.

At the blind, we took turns swinging the hammer, nailing the corners up on the blind. Then we set to assembling the roof. I don't think I mentioned it, but I have a style of production that involves building all the wall and roof modules on the ground and then lifting them up and assembling them in place. The roof was going to be the heaviest and most difficult lift, because it involved three metal panels fastened together and it was oversized and cumbersome. After a few setbacks, we got it put together and worked out a plan to get it up. We were going to lift it up and lean it onto the side of the blind. Then I was going to climb up the ladder, while my brother held it in a "clean" position (if you are familiar with weightlifting, this is holding it up right under his chin). Anyways, I climb up and stand on the windows and reach over the top of the walls down to the roof panels. My brother then jerks (another weightlifting term) the panel up and I grab it and using momentum, I try to keep it going and swing it up onto the roof area. Well, it was heavy and my strength was not with me, but I'm hanging onto it and yelling, "Come up and help me, I got it, I got it, I'm losing it, I'm losing it!!!" My brother made it up just in time as I was about to let go. He grabbed it and with the two of us on it, we were able to pull it up...what an accomplishment!

We got the roof on. The blind is done...except for a few nails that I have to complete on the corners where the sheathing from one wall overlaps the stud from the other wall, but I can get that later. Four days, three and one-half cases of water, one hammered finger, a tired pooch and the hell with MS later and the blind was done. Photo included above!

We made it to the airport on-time, and all showered! Thanks Bro! The help was great but the time spent together was what really meant the most to me. And to hell with the MS. It was mind over MS!

My Left Side

2009-08-28T08:36:00.000-07:00

From that brain scan over there...and it is looking up, so that is the left side of my brain where you see the largest of my lesions...I have tried to figure out what is supposed to be happening to me. Experts have partitioned our brains, you know, tested, prodded, and made determinations about our brains of what they do and what they control and how they do it.

The left side solves problems by logically and sequentially looking at the parts of thing; the right side solves problems with hunches, looking for patterns and configuration. The left side looks at differences; the right side looks at similarities. I could go on, but this is just confusing me and making sense to me all at the same time!!! Why? Because, while each description is describing an opposite for the respective sides, to me it is describing the exact same thing, because to me, if you are consciously doing one, you subconsciously are doing the other. Maybe that is why I am a good puzzle-solver and test-taker.

So, while I think I have solved the human brain, what I am still wrestling with is how MS is effecting me and my brain, and what my brain does for me. It still does everything, just not as good as it used to. The things I notice are obvious to me. But, what am I not noticing? This intrigues me!

To be continued...

Arrgh....Why Did I Do That!

2009-08-10T06:30:00.000-07:00

I snuck into a movie the other day. YES! That is stealing, I know that! It was spur of the moment, just feeling wild again, if that is at all possible. Please forgive me, please. Anyways, I walked in to Funny People, thinking it was just a plain comedy, the usual fare from Adam Sandler and Seth Rogen...you know, nothing that is going to cause me to think beyond boy meets girl, boy does something really dumb, boy loses girl, boy learns from the experience, boy gets girl back, and everyone goes home wondering why they paid $9.50 for the last two hours of their lives...only in my case, I'm snickering because I was duped for nothing. I was wrong!

I didn't think these guys were capable of making something that related to me in some far-fetched sort of way. But they did and they did it in a way that kept me somewhat entertained throughout. So entertained was I, that I shrugged off the building "I'VE GOT TO PEE!" feeling until it came to what might be a slow spot in the story, when I rushed out to relieve myself, all the time trying to see if I could hear what was going on through the wall while relief was being delivered. No such luck!

I said this movie related to me some how, some way and it did. Except I'm not in the habit of spoiling people with explanations of movie plots before they have seen the movie, so I can only go into so much detail. Besides the overtones of humor, the movie also deals with death and disease, ooooohhhhh!!! I know, wow! Well, it deals with it with some humor but also boils it down to the sensitivity of it at the personal level and that is where it got me.

Let's just say, I enjoyed the movie; I enjoyed the humor; I enjoyed the acting; and the unexpected depth of it surprised me. Also, it is the first time I ever cried while watching an Adam Sandler movie and who would've thought that could ever happen to them? Not me, LOL!

I Feel So Disconnected

2009-08-06T19:48:00.000-07:00

I know...It's my own fault I feel this way! I haven't exactly been out there...you know...hobnobbing, making my presence known, speaking up for the cause, grousing to others, glad-handing, sharing my MS... I guess if I'm going to commit, I might as well just grow some, step on out and holler out to others. Sitting here tapping out thoughts to myself isn't doing it. Okay, look out MS world...here goes nothing...

I'm Doing This For The View

2009-08-05T07:41:00.000-07:00

I’m going on a quest, a mission, a journey, a party…

The start of which is NOW! My mind is made up.

There is no turning back in the face of any impediment or hurdle.

This is all about me and anyone else that wants to tag along.

You can stay where you are, you can follow, or you can turn away.

I’m going. That much is certain. I will do this.

The peaks are waiting and my legs aren’t.

Time is but a point in space where things align.

See you at the top! I'll be the one with the "Pearl-Handled Walking Stick!"

What am I doing, really? Over the next year I am heading out to some of the highest peaks with the best views in the state of Texas. I haven't picked them all out yet, but the areas that I am eyeballing are Big Bend, Guadalupe, Presidio County, Van Horn, Davis and North Franklin. The first trip will probably be timed for September. I will keep you posted.

Are You Afraid of Relationships?

2009-06-13T08:15:00.000-07:00

True story; I was visiting my brother and his family a week ago. They have a prayer group at their house every Sunday night for dinner, discussion, and prayer. And, apparently, all are welcome...even sinners like myself. Anyways, I was staying for the weekend, so I was the first one there and I had the opportunity to meet and greet people as they walked in.

A few were already there and the gathering was starting in the kitchen and I was conversing with a couple of others and for some reason we were talking about relationships, when all of a sudden, one woman, who I had not met yet, kind of butted into the conversation from the side...let's call her Betty. So, Betty leans in and blurts out, "You know, the word engagement has the word 'gag' in it!" There was a moment of silence in our little group. But, Betty wasn't done. She then let loose with, "And if you transposed the 'I' and 'T' in marital, you get martial!" Another second of silence. Still not done shocking us, Betty says, "I'm proud to say that I am happily single, if you haven't noticed!" Well, it was time to respond and I didn't hesitate any longer. Bear in mind, this is the first time that I am meeting any of these folks. I say back to Betty, loud enough for all to hear, "No, you're NOT! You are cynically single" When I said that I was not sure how anyone would receive my response, after all, this was prayer meeting. Luck was with me. The entire room had tuned in and when I said that, everyone burst out laughing!

I found out later, from my brother, that Betty was a rabble-rouser by nature and this was the only meeting that she was allowed to attend. Because of her demeanor and other indiscretions, which I won't go into, she has been barred from attending any of their other gatherings.

Anyways, somehow I got to talking about how I was catching an early flight out on Tuesday morning. My brother and I would be waking at 4 AM to get to the airport on time and when Betty heard that, she piped in how she gets up at 4 AM every day. I immediately puckered up, seeing visions of Betty pulling into the driveway in the darkness Tuesday morning to take me to the airport. Fear got the best of me and perhaps saved me in this case. I changed the subject before it got off the ground. "Did you know, I made the roasted potatoes we're having for dinner tonight?"

YES, I have MS

2009-06-13T04:25:00.000-07:00

My first blog...what is the theme of my blog? Let's see. Thinking. How about ME.

YES, I have MS. But, it appears it is a milder MS than some. It is relapse/remitting, as the doc says; certainly not to be taken lightly. My symptoms are not advanced. I can see, although it was my vision that first caused me to go to the doc. My vision gets what I call 'wonky'. The eyes start wandering a bit, well, at least one of them does. And, not all the time. I also experience numbness and fatigue in my legs, but I am still active and I try to do all the things I used to do. My abilities are impaired compared to what I was like just a few years ago. Although, I am certain that I have had MS for a long time without realizing it...probably 20 years or more.

Anyways, my eyes had acted like that about a year earlier and it went away then, so not really caring for a visit to the doctor's office, I forgot all about it. Then, the next time, after a year, and I thought, 'again', maybe I need glasses. It didn't take that doc long to get on the right trail. She said I needed an MRI. That sounded serious enough that I scheduled a trip to the MRI store the next day.

A day later, I get a call and there is a suspicious lesion on the MRI and the eye-doc tells me I should see a neurologist. So, not wasting any time, next thing I know, I have a copy of my MRI and I'm looking at it at home before I see the neurologist, and it is plain to see...there is something there. Now, I have a history of cancer, having had a melanoma-positive mole about 10 years earlier. So, the immediate concern was cancer. The neurologist confirmed that, but he was not eager to dive in, it seemed, so I sought a second and third opinion.

Brain biopsy was the consensus decision, and in less than two weeks I was strapped to a state-of-the-art operating table having a hole bored into my skull and a needle inserted into the largest of the suspect lesions. The on-site pathologist saw no cancer, but did see demylenation. In the blink of an eye, my life expectancy went from six months to whenever. So, I found out that a sample of your brain will not allow a neurologist to diagnose you with MS, even though, that is what I was told it PROBABLY was.

Seems there is a torture protocol invloved in the diagnosis of MS that includes a spinal tap and my doc was intent on seeing that I didn't miss out on that. This was the longest of all the processes as it turned out...the OFFICIAL diagnosis. Multiple MRI's, counting of lesions, positive spinal tap, and finally the diagnosis. I was ready to start the treatment, but which treatment...my doc and I decided on Betaseron...then I had to wait to get APPROVED for the treatment. When it was all done, I felt like I had been INITIATED into a club or some sort of fraternity, with all of the hazing INCLUDED!

So, as I said, my MS is mild, but that is not to say it does not affect me. I think the mental and emotional toll is the worst of my symptoms. The fact that I can't run and jump like I used to can easily be written off as getting older. It was only a few years ago that I could still jump and get above a basketball rim. That is history now. One of the things I have noticed and I don't know if this is MS or if I am just a wuss. I find myself tearing up when I am watching TV, viewing a tender moment or an exciting sports victory. I watched the movie Seven Pounds, and I swear, I cried from start to finish. Took me three days to recover from that experience. I have talked to friends and family about that movie and some couldn't understand why I would cry over it. Hmmm...maybe I am a wuss...