Know Multiple Sclerosis

Time is our worst enemy. The only difference between a 99 year old man on his death bed and a beautiful newly born child is time. Time is absolutely brutal. Just look at what it did to that 99 year old man's body.

Time is also very much an issue with multiple sclerosis. The longer you have the disease, the more likely you are to have problems. It's scary, but it's true. Every day counts.

Knowing that time is not our friend can have some positive effects.

First, research has shown that, for some, early treatment with one of the disease-modifying drugs can slow the disease. The sooner one begins to tackle the disease, the more likely the results will be positive. There is no cure...only disease-modifying treatments aimed to slow the disease down. So, it makes sense that earlier intervention would yield the best results.

Secondly, keeping time in mind is a good general practice in life. I'm not talking about obsessing over it; rather, keeping it in mind to try to maintain perspective and get the most out of the limited number of days we have.

Lastly, knowing time is an enemy can help light a fire in someone to get up and do something. It could be something as simple as raising money for research. For me, it just felt good to feel like I was contributing.

It can be depressing to think that in one hundred years, we all most likely be gone. But, it's that much more incentive for me to do everything I can while I'm here to make a difference. It's wise to get started soon - I have one less day today than I did yesterday.

Posted by admin on June 14, 2007 01:23 PM | Permalink

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NPR Science Friday was discussing the stem cell debate yesterday. This is a fantastic show week after week - I highly recommend it. I called in to make the following points:

First, for all of those who oppose this research, I would ask them to consider this: What if you or your child or your parent could potentially benefit from this research? It's easy to take a "moral" stance when it would not impact you.

Clearly, we don't consider these embryos to be babies. How could we possibly rationalize our current policy of destroying or freezing them indefinitely? One of the panelists had a great question for one of the callers who believes each embryo is indeed a baby. He asked, 'If a building was on fire, and you had the choice of saving a six year old girl or a plate of twenty embryos, which would you choose?'. The caller struggled with the question, and never really gave an answer.

The debate will go on, but eventually the U.S. will lift the current limits on federal funding of this research - probably with the next presidential administration. Until then, the research will go on in other countries, individual states, and the private sector.

While the President's policy is absurd and the debate should already be over, it does provide us with a chance to raise awareness for multiple sclerosis, since we could potentially benefit from this research. In that regard, I like that the debate is still happening....thanks President Bush.

Posted by admin on April 28, 2007 02:04 PM | Permalink

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Luck - there is no substitute for it in life. Luck is what allowed the exact egg to be fertilized by the exact sperm which created us. When you think about the chain of events since the beginning of time that led to each of us being born, and that if any of those events were just slightly altered we would not be here, it's mind-boggling.

Luck is what allowed us to survive in the womb and kept us safe during the early childhood years. Luck is what allowed us to get through the difficult teenage years, where any one of the irresponsible decisions we all make during that time could have killed us. There is a desire in all of us to want more than just luck - to know there's a reason, a purpose. But, for me, it's just luck. We're here for a short time and, if we're lucky, we get to live a full life.

Posted by admin on March 9, 2007 02:33 PM | Permalink

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I know I've written about this a lot already, but this issue popped up again this week with the Michael J. Fox vs. Rush Limbaugh story.  Hmmm....I wonder which side I'll take.

For those not familiar, a quick synopsis:  Michael J. Fox appeared on a political ad in Missouri, where a stem cell initiative is to be voted on November 7th.  In the ad, Fox is promoting a candidate who supports embryonic stem cell research.  He is seen shaking and is clearly affected by his Parkinson's disease.  Limbaugh claimed Fox was either off the medication or he was acting during the ad.  Limbaugh later apologized.

First, I'll address the obvious.  Limbaugh clearly knows nothing about neither Parkinson's nor empathy.  It wasn't so long ago that he was dealing with a problem of his own in painkillers.  The difference with Fox is that he had no choice in his condition.

Now, to speak to the debate over stem cells, there is no compelling argument to stop embryonic stem cell research.  While I respect the right of everyone to have their own opinion, I firmly believe the opposition is wrong in this case.  I hear from the opposition that we need to protect life.  Where is that protection for the thousands of embryos destroyed today during the in vitro fertilization process?

It is impossible to stop human progress.  It is inevitable that embryonic stem cell research will continue.  The federal government should take a leadership role and help to regulate this area of research.  It's only a matter of time until the federal government gets involved with this progress.  The longer it waits, the longer we all wait to see what hope this research may promise.

Posted by admin on October 31, 2006 04:39 AM | Permalink

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I recently had an email conversation about clinical trials with someone who visits this site.  The recent results from the FTY720 drug from Novartis prompted this discussion.  This is an oral medication with very encouraging results.  It's currently in Phase III clinical trials.

I very much appreciate all those who participate in the clinical trials for drugs like this.  It is people like them who helped bring the current drugs on the market.  It's one thing to sign up for these trials when there are no alternatives; but, with MS there are other therapies available so a decision to participate in a trial is also a decision to not use one of the proven drugs available today.  There's also the risk of being part of the placebo group, where no drug is received.  This is a valuable part of the scientific process, but also means that a lot of the participants are receiving no therapy at all.

I admire those who are willing to make this sacrifice.  By participating in these trials, they are potentially helping thousands.  I honestly must say I'm not generous enough to give up a proven medication in order to test another one.  Good thing not everyone is like I am.

Posted by admin on September 30, 2006 10:31 PM | Permalink

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I'm always amazed at how little empathy people have for each other.  It shouldn't be so difficult for us to try to put ourselves in someone else's shoes, but for whatever reason it is.  I know I'm guilty of it as well.

An example closely related to MS is embryonic stem cell research.  There exists the ideological movement to ban such research.  But I would bet that, for most who oppose the research, if they had a child or parent who could potentially benefit from the research, they would change their minds.  Not all of them, but some.  Until these people are personally impacted (or their loved ones are impacted), it's easy to form a "moral" opinion. 

As someone with MS, I want to continue embryonic stem cell research.  And I want it to be funded by our federal government so we can find out as quickly as possible whether it could help us, along with many others.  I find that to be the "moral" opinion in this debate.

Posted by admin on September 19, 2006 04:11 AM | Permalink

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I hear a lot about alterntative therapies.  To me, these are products which have been spared the inconvenience of scientific testing.  After all, we need therapies now.  So, there is no time to wait around to prove something is effective and safe, right?  Wrong.

While it is true that traditional treatments do not work for everyone; and, I believe if they were not working for me, I would be seeking out alternatives.  But, I also believe I would be very cautious and hesitant to take anything that had no data for safety and effectiveness.  If the therapy really does work, why not put it through clinical trials?  This is the standard of proving a drug is a legitimate treatment for a condiion.

There may be alternative therapies which work for some people.  But, until they are proven with clinical trials, the success stories are nothing but anecdotal sales pitches for a product.

I think one of the most despicable things I've seen with MS is seeing how many people seek to profit by taking advantage of those who are vulnerable.  Yes, drug companies profit, but they also invest an incredible amount of research and development funds into developing these drugs.  And, for each one that pops, there are countless others that they had to throw out.  All of these costs get wrapped into the drug.  It's with the people out there intentionally selling false hope with unproven products or ideas that I have a problem.  There must be an easier, and less pathetic, way to make a living.

Posted by admin on September 8, 2006 05:47 PM | Permalink

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Embryonic stem cell research is an especially hot topic for those affected with chronic illnesses such as multiple sclerosis.  These are my thoughts on the subject.

The issue of embryonic stem cell research has two very different perspectives.  On one side, there are those opposing stem cell research because they feel it is unethical to intentionally destroy an ebmryo, regardless of the benefit that could be gained.  On the other side, there are those supporting stem cell research because they claim it will save millions of lives.  I see both sides as being a bit disingenuous.

Certainly, to create human life with the intention of destroying it (we do it all the time with animals) in order to further science is a frightening thought.  Much of the stem cell argument seems based on the definition of when life is created.  Those against stem cell research often say life is created at fertilization.  There are various times in which those supporting stem cell research say that life begins.  Some say it starts when the baby enters the third trimester of the pregnancy.  Others say it starts when the baby emerges from the womb.  From a biological perspective, I think life does start at fertilization.  To try to point to an exact time after that in which life all of a sudden exists is impossible. However, to suggest that an embryo is equal to a human is absurd. There is no nervous system so no pain is felt. The embryo has the potential of growing into a human; a human being has actually done it.

The supporters of stem cell research often claim that millions of lives will benefit from the research.  None of this is proven.  While it is true that stem cell research is promising, it has not been proven that this technology will save millions.  It is irresponsible to try to sell stem cell research as such.

That said, there exists a policy in the Unites States whereby embryos are created to assist with reproduction.  After some amount of time, the leftover embryos are either frozen indefinitely or destroyed.  If our society truly recognized these leftover embryos as lives, we would have a funeral for each one of them.  The fact is that they will be destroyed.  This begs the question, "Why not perform the research if they will be destroyed anyway?"  I certainly don't have an answer to that.

I hear the argument that adult stem cells could be an alternative to embryonic stem cell research, so there's no reason to destroy embryos.  The point is that no one knows yet.  And, until science learns more, we should pursue both technologies.

From a practical perspective, both technologies will be pursued.  Whether or not the U.S. federal government funds stem cell research is not going to decide whether it will continue.  Individual states, private companies and other countries are currently funding embryonic stem cell research.  But, U.S. federal funding would allow us to find out sooner if this is a technology that could save millions of lives.

Posted by admin on September 2, 2006 09:17 PM | Permalink

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It's often said that everything happens for a reason (i.e., it's God's plan).  I don't buy it.  I believe everything just happens.  And, to some extent, we are empowered to do what we can with what we are given.

I don't hate the multiple sclerosis.  I am able to live a normal life thus far.  And I have a wonderful wife and two amazing children.  Had any event changed in my life prior to those children, those exact children would not be here.  Therefore, I cannot hate things that happened to me, regardless of how difficult or painful they were.  Those events, combined with all the good ones, brought me to where I am today.  And for that I am grateful.

Posted by admin on August 22, 2006 05:36 PM | Permalink

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