Category Archives: Multiple Sclerosis

Family, family picture, Hope, MS research, Multiple Sclerosis, optimism, wellville

Optimistic for a Game Change

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I find myself stuck between hope and optimism. My need for either comes from a sense things can not continue indefinitely along my current path. Pain grows and periods of blindness increase in frequency. I know much of this is a by product of stress. Thankfully, I have some reasons for optimism and hope. When one can not win a game, and the playing of it gives only negative results, perhaps it is time to change the game. In my case, the potential changes give hope for short term betterment and optimism for long term changes.

For me, the difference in the two terms, hope and optimism, lays in one’s expectations. Optimism implies an expectation of a positive outcome or set of outcomes. Hope is the ability to conceive of and imagine a good outcome after we have set aside all of our expectations for good or ill.

Hope remains independent of our logic. At times, it may be buttressed by our optimism and logical expectations. Yet at other times, it may be the last defense standing alone in the path of the hurricane of our existence which seems to blow away all that upon which we have built our lives.

Some days, we must all hide behind our hope, taking shelter until the sun shines once more so that we may begin to build anew.

Hope for the short term:

MS certainly creates stress as my body shuts down at work and home. At work, I manage a team whose membership has changed suddenly. I have all new staff, and I have to hope they are as good and competent as they seem because our schedule remains unchanged. I have to hope I can move on from this job after I set it up to continue. I need to change this game because my ability to enjoy the process has left with the staff I picked and trained.

At home, I hope my oldest daughter learns to accept her limited diet and finds a way to thrive emotionally. Last week, she accused us of trying to kill her by not letting her eat (by mouth). I can only hope because right now, in the midst of it, I can not see a way out. Yet we will continue on as best we can, hoping for peace.

Optimism for the long term:

There was an article in Nature last week showing for the first time how the brain is connected to our immune system. It mapped out the blood brain barrier. While this is not in itself a cure for MS or Alzheimers, it does put the brain back in play as a normal vascular system where blockages can be seen and predicted. CCSVI was a procedure started by a vascular surgeon in Italy who believed his wife’s MS was a vascular problem. He put a stent in her brain to improve blood flow. Since then, thousands of MS patients have had the same procedure, despite not knowing if it solved a real problem in our brains. For some it helped, and other it did not. Studies seemed to show MS patients were no more likely to have a blockage than a healthy person. Now, with this study, we may better be able to look at the brain’s blood flow and understand the system. Suddenly, we may have changed the brain from a complex system to merely a complicated one. A procedure like CCSVI may be better targeted.
http://medicalxpress.com/news/2015-06-link-brain-immune.html

This discovery has the potential to be a game changer for our understanding of how the brain works.

On the home front, our game change is in name only. This week, we adopted K who has been with us for years. It may be in name only, but the feel good news comes at a most welcome time.

Our family officially grows to match what we have known and and lived for years. We are now officially a nuclear family of 5.
Our family officially grows to match what we have known and and lived for years. We are now officially a nuclear family of 5.

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mistake, MS, MS cognitive function, MS progression, MS research, MS symptoms, Multiple Sclerosis, Uncategorized

How We Measure Success: Beware Dangers of Metrics Posing as Reality

This do it all scale can tell me my weight, height, body fat percentage, total weight of my fat, and more...if I believe it to be accurate.
This do it all scale can tell me my weight, height, body fat percentage, total weight of my fat, and more…if I believe it to be accurate.

In our hustle and bustle world, it seems there is an increasing pressure to do not just “better” but to do “optimally.” We want to know we could have done no more and be no better than we are. This desire can lead us down many false paths as we attempt to quantify “better” and “best.” How do we measure success?

At 9:48 on April 13, I stepped onto the new scale, height and body fat analyzer at work outside our little convenience store. Then after my lunch run, I decided to see if there was an impact from my run. Since there was no line, I stepped right up. One forty-five minute run resulted in my losing 6.4 lb. of fat! It was such a miracle run, I even gained 0.4 inches in height. The machine even gave me a receipt to prove it!

This machine is a very convenient way to track some basic health stats. However, there is no way I burned 6.4 lb. of fat in a 45 minute run. What this test shows is our need to question the results and measurement error before drawing conclusions. The simplicity of the two measurements claiming to measure the same things seems like a great test, but if results like mine were real, I would be a biggest loser coach on a team that never loses. Alas, life is rarely that simple.

Do not think this is simply about my fat percentage as read by a scale. We make these measurement errors all the time in our desire to have measurable, quantifiable results. With multiple sclerosis, drugs have been approved for more than a decade based on their ability to reduce the number of new lesions seen on MRI’s of patients’ brains. It’s an easy, if expensive, measure which gives researchers a nice quantifiable measurement from which they can claim “drug X is an improvement.” However, the question remains as to whether the lesion test is a good test for the reality of the patients’ multiple sclerosis progression. I and many other MS researchers have come to believe the overall brain volume/shrinkage is probably a better measure of MS damage, but that measurement isn’t enough on its own either to define the damage.

At some point, like after my run, a look in the mirror and noting which belt notch I use is probably the better bet to determine the impact of my run, even if the measurement is less precise than the super scale pretends to be. Similarly, I would never take the results of an MRI showing lesions as the best sole measure of my MS. Some days I will feel awful and tired with new symptoms, and the test results might or might not show why. Neither result changes my reality for all my attempts to quantify the impact of my MS today.

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