Category Archives: optimism

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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Bias, Bias in Drug Studies, Children noticing race, Children skin color, Children's theology, Fun with Clinical Articles, MS, optimism

Optimism, Bias, and God

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In October this year at a conference on the treatment and research of MS, a paper was released with some very good news for MS patients in the very first line.  It seems, “Mortality rates are higher in people with multiple sclerosis than in the general population.”  As somebody with MS, I think it’s fantastic news because as far as I know the mortality rate in the general population is 100%.  If one believes this first sentence, I am more likely than a person without MS to get another spin on this cosmic trip we call life.  
Of course, the bummer is contained in the very next sentence where it says, “However, the reasons for the shorter lifespan in people with MS are not well understood.”  I guess it all evens out in the end.  We are likely to have more, though shorter life spans.  Somehow I think the results as I have (misrepresented) presented them in these two quotes are not likely to be repeatable which leads me to the next video forwarded to me about our bias towards reporting findings we want to be true.

I’ve certainly seen this in MS research.  Often times, new medicines become laughed at as the new “bee sting therapy” which still runs around the internet from time to time as well wishing friends and family try to suggest this new therapy.  For MS, the latest is probably CCSVI, an attempt to stint clogged veins carrying blood from the brain.  One cardiologist in Italy thought his wife’s condition was a circulation issue rather than an immune response attacking her nervous system.  Because she showed improvement, he performed the surgery on other MS sufferers. 

Note, while this procedure is performed in the U.S., many reputable centers have stopped.  Nobody has even been able to show these blockages in veins happen more often in MS patients than the general population.  What’s more, the results for all those who have had the surgery are inconclusive.  Still, many patients grab at any hope because hope is what we want to hear.  I worry the stints they use aren’t made for the venous angioplasty, and this may cause problems down the road, though they appear safe at the moment.  I also worry veins seem to be able to find new routes without this surgery, so we may be needlessly introducing new problems and costs 5 years down the line.  Additionally I wonder why so many for whom the procedure works seem to need it again.             

The hard part is I can’t convince myself the doctors are being irresponsible, because every success is trumpeted.  Furthermore, for those whom it doesn’t work, we aren’t seeing negative outcomes yet.  Negative outcomes would include things like deaths, brain damage or other serious complications.

I’ve come to think the one thing patients with long term serious chronic conditions want from their doctor is hope or a validation their idea might help. However, I note there seem to be at least 2 studies saying it doesn’t provide measurable success for every 1 repeating the initial story of success.  Lest one think patients are any better than researchers, one need only look at patientslikeme.com.  Even patients are far less timely reporting why we stop a drug compared with reporting initial successes.  We want any thing to help.  Placebo effects? 

I don’t care.  Give me a placebo if it works :-).

(Continue to next page for family notes and stories)

——————-Family notes—————————

K had her second birthday, and above is a picture of her response to trying a cupcake.  Keep in mind she has had very little to eat by mouth since Jan.  

Funny quote from O, “Daddy, why is your penis so white?  Mine is darker.”  This is a great conversation to have in a public restroom amongst the many chuckles.

Funny conversation with A:
A: “I can’t wait to be an adult!  Then I can watch TV whenever I want.”
Me: “You know I’m a big Redskins fan, right.” Response is a nod affirmative.
Me: “They played today, and I didn’t watch a single minute of it.  I was with you and the rest of the family instead because family is more important than any TV.  Right now I am sitting here in the bathroom waiting for you to finish so we can read a book before bed.  There are TV shows on now which I like watching, but you are more important.”
A: “But you have the power to watch whatever you want on TV.  It’s not fair.”
Me: “With all power comes responsibility.  I have the power to watch whatever I want, but I have a responsibility to you and O and the rest of the family.  Even when you go to bed, I have the responsibility of walking the dogs and cleaning the kitchen.  Then if I have any time and energy, I can watch TV.”
A:”Fine.  If adults have all that responsibility, I wish I were God!”
Me: “You always complain we don’t understand you.  You think I and others don’t understand you now?  People have been trying to understand God for thousands of years.”
A: “What!  Really? Why don’t they understand him?”
Me: “Why do you say he?”
A: “Because he’s big.”
Me: “There are species where the women are bigger.”
A: “There are no big females.”
Me: “Are female wales bigger than me?  Yes.  Being female doesn’t mean small or weak,”
A: “OK then I still want to be God so I can make the rules and watch whatever TV I want.”
Me: “I’ve noticed as I’ve gotten older, more power always brings more responsibility.  I doubt the power of God is different.  It may be, but it’s not my experience.  You would be responsible for all people everywhere.  With that much to do, I suspect TV may not rank high on your priority list.”
A: “Fine I will just be an adult and watch whatever TV I want.  I don’t care about any other responsibilities.”
Me: “I hope you change your mind by the time you are old enough to live your adult days, but for now, it is time for bed.”

Here is another of my favorites of family life from the zoo this weekend:

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