Category Archives: Success

athlete, MS study, O's recipe, PML, self confidence, self esteem, Success, Tysabri

1 hour 58 min.

1 hour 58 minutes
It was a building block to remember my old sense of self-confidence.
That’s how long it took me to run my first half marathon.  That’s a pace of just over 9 minutes per mile, and the best part was I never felt tired.  I had planned to stop at every water station and walk, but I never felt the need.  In truth I took some joy listening to the lady behind me chuckle as I followed my usual practice of taking two cups of water at every stop and promptly pouring over over my head.   I guess some people don’t do this in 34 degree weather, but it felt good.
The best part was the sense of being able to do a physically demanding activity, and do it well.  I know these races are against only myself in reality, but…it was also against the self loathing and the sense of helplessness.  Does anyone wonder why sports can play such a role in a participant’s life?  For me it’s because for a long time they were a source of self.  I was an athlete, one who was fit enough, smart enough, and coordinated enough to be good at any sport with a little practice.  For one morning, I was able to feel that sense of self esteem which comes from participating in a sporting event.  Running in the race was a way stop the devaluing in my head of what I can accomplish.  It’s interesting because the run isn’t one of my life’s greatest accomplishments, but sports in general are what gave me the confidence to deal with everything in order to live the life to which I aspire.  At least for now, the day after the race, the runner’s high lingers, and the attitude adjustment/reinforcement is probably as valuable as the 45lbs. lost in training.
One of my favorite parts of the run was all of the signs and people cheering.  For any who have ever considered going to an event like a marathon with a sign, please do.  If you feel particularly kind, put some humor on your sign.  My three favorite signs were:
“Your training for this event probably lasted longer than Kim Kardashian’s marriage.” – Mile 6 or 7
“You go random stranger.  You got this.” Mile 2
“Smile if you peed yourself even a little while running this race.”  Mile 11
(continue for MS notes and family notes)

On the MS side:
It appears NIH is investigating a test to look at t-cell responses.  The quote from the paper of interest to me was
“The potential of such screening of JCV-specific T cell responses to identify a small number of individuals at risk for the development of PML could be complementary to stratification strategies based on antibody levels that are currently being tested to identify approximately 50% of treated individuals who are at increased risk [2], [39] . Second, the unique IL-10 response to JCV in two PML cases and the increased levels of IL-10 in the CSF of subjects with PML suggests that IL-10 or the IL-10 receptor may be potential therapeutic targets in natalizumab-associated PML [26] . Finally, the poor magnitude or quality of the memory T cell response to JCV in subjects with PML suggests that a vaccine which boosts JCV-specific T cells that produce IFNγ, TNF and IL-2 could play a role in the prevention of natalizumab-associated PML.”
It is important to note this was a small study and as such is subject to all kinds of measurement errors.  My question after reading the paper is how difficult/costly is it to test for the T cell responses for JCV proteins since it looks like the predictive value of the tests lay in a single outcome of heightened IL-10 production?  From a graphical standpoint, Figure A and B tell pretty starkly different stories.
On the home front, my favorite moment came Sunday night as O grew ever more hyper.  I was ale to focus him on cooking with the simple appeal, “O, please come over here.   I need you to hit this with the meat hammer.”  Once he had pounded the chicken, it was easy to get buy-in for helping prepare the rest of dinner giving him some choices about what we were going to put in it and how we were going to present it.  He now has a dinner’s worth of cooking experience, and it was good enough for all of us to get seconds, twice the rarity considering the amount of vegetables in it.
O’s Chicken recipe:
Step 1: pound flat ¾ pound of chicken breast.
Step 2: place in glass baking dish, cover with BBQ sauce, flip and cover other side.
Step 3: cover with tin foil and place in over at 400 degrees for 5 min.
Step 4: Remove foil.  Cover chicken with cheese (we used Swiss).  Recover with tin foil.
Step 5: Make broccoli and spaghetti. (Breaking the spaghetti was a highlight of the middle steps, but draining ranked high too).
Step 6: Take out chicken when done (for our oven 15 min.)
Step 7: When all three parts are done, a parent can cut the chicken up, and all three were stirred together in a large bowl. 
Step 8: Call everyone to the table and eat!
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disabled, failure, fear, job search, seasonal adjustment, statistics, study, Success

Meaningful Success or Failure: Both Only Come With Effort

I have to admit to a few moments of insecurity as I hit send.  I had just sent my resume to HR to the unit covering disability hires.  I was applying for a new job which is hard enough because I like my current job.  I don’t apply for many jobs because I want to do something interesting 40 hours a week.  Still, this was a job supervising economists working on health care issues and meta data.  If ever there was a dream job, this is it. 
Still, saying I am “disabled” seems ridiculous.  The HR person whom I had met for lunch insists I should have been claiming I was for all applications because it bumps me up and makes it far more likely to get an interview.  She insists it is like military preference.  What!!?  There is no way it should I insisted.  Those people made hard choices and all I did was get sick.  Still, she insisted disability hires are counted to show no discrimination, and my qualifications should get me an interview any way.  By applying this way, the Bureau gets to show compliance.  Still, I run.  I think. I may limp when tired or get headaches from hell, but “disabled?”  Evidently the threshold for disability is would you have trouble with major life activities without aid which includes medication.  The answer for me is “yes.”  So I applied using that route with no long paragraphs on which to be evaluated, just my resume.  A week later I received an email my application has been accepted and I have been deemed eligible.  I will hear more in the next month.     
Some times I find myself going back to Jim’s words.  He was an employee whom I supervised for 3 years, and he was a huge source of wisdom.   I remember him saying, “If you don’t seem any mistakes I’ve made, then it’s time to wake me up.  I only make mistakes when I try to accomplish something.”  There is a huge truth in his words.  We only fail if we have tried to succeed, and we rarely succeed at anything without a failure or ten.  So as I apply for a new job, as I try to raise 3 kids with needs, as I try to be a partner for my wife, I find myself needing to remember his sentiment. 
Don’t fear failure. 
Recognize it and the fear of it. 
Then adapt and move forward.   
For rational and an email proposal I am working for seasonality of MS symptom research continue to next page

 

Side note: I prepared the following email, but I am still tinkering with it and to whom I should cc it.  I have the email for Biogen who make Tysabri which I currently take, and I have the email for the research team of patientslikeme.com to whom I will send it.  My debate is whether to also send to my neuro as Hopkins has a research department who could do this work too.  Still, we have seasonal adjustment software already written here.  My hope if they agreed to let me use the data, I could ask work and run it through our software quickly using only a few lunch hours and maybe a day off to complete my work.  If they charged, I would need a sponsor to do it as I laid it out.  I am less enthusiastic about writing a grant proposal as I would spend more time on that process than the doing of the research.  As my mom pointed out, some of the researchers would be able to give the request prestige and more likelihood of getting acceptance.  That’s fine.  I’m not in it for prestige.  I just want the results, and I think they would be valuable in analyzing new MS trials and research.  The results should have import for pharmaceuticals and the FDA.  I know patients like me is reporting only patient self assessments, but with the size of the sample, isn’t an increase in symptoms more likely to show by asking than MRI’s?  After all, new studies seem to show continued smaller levels of demyelination, even after the flares no longer show up as active.
The email:
————————————————————————–
The Kessler Foundation recently published a study showing people with MS have decreased cognitive function as temperatures increase.  For most of us with MS, this is a given.  Sensitivity to heat is a common symptom for those of us with MS.  However, as easy as it is to blow this study off, it does point to the possibility of some seasonal effects which could have an impact on research and clinical trial results (as if those are different things).

For example, if I were a pharmaceutical company planning a clinical trial, I would try to start it in June or July and end it some time in the winter or spring.  The theory is the drugs perceived efficacy may be enhanced by a seasonal effect.  Now I will grant the perception of symptoms versus the progression of lesions may differ, but as a patient my perception of a drugs efficacy is driven in large part by my symptom progression.  This sites data is ill suited to collecting MRI lesion data.  However, it would seem this site is extremely well set up to capture and quantify a seasonality effect on symptoms. 

I work with economic data, and we seasonally adjust data all the time. 

Would it be possible to work a with a data set from Patients Like Me in an effort to try and quantify a seasonal effect on the reporting of new symptoms?  It would seem plausible to look at the date new symptoms are reported.  The results would not capture all of the symptoms experienced.  So it won’t give an absolute percentage, but if one assumes the reported symptoms are representative of all the accumulation of new symptoms then the study would give a reasonable simulation for the MS population’s expected accumulation differences by season.

Ideally, I would suggest a test design where all new reported symptoms count as 1, with sums of new reports by symptom category for the time period be the variable for which seasonality is tested.  The test population should include only IDs active during the entire period studied.  Defining “active” is a potential problem, but I would start by setting out of scope all IDs who joined during the studied time, who never reported symptoms, and all IDs who have not returned after initial input of symptoms.

With a data set this large, I would prefer to break down the symptoms examined to a shorter list of 5 to 10 which may be the result of combining symptoms into a few broader categories.  For example short term memory issues, name issues, cognitive fog, could be lumped together under one category like “Cognitive Function.”  This could be treated differently from sensory issues and other grouped symptoms. 

I would like to combine the symptoms for ease of research because I would subset the results where possible by various demographics, locations, length time with MS, and Disease Modifying Drug (DMD).  I worry further parsing the data will prevent the identification of significance.  As it is, I would love to see the data teased out for each of the DMDs to see whether any of the drugs reduces the impact of seasonality. With stat software from SAS, there are some pre-programmed packages to identify seasonality on the whole and for each of the sub groups.  Have you at Patients Like Me done any of this type of research or are you aware of other research on seasonality already completed elsewhere?

Thank you,
XXXXXXXXX
(XXX) XXX-XXXX

I have included the Kessler foundation in this email and Biogen who make the Tysabri I currently take.
 
Link to the Kessler foundation’s page talking about heat sensitivity:
http://kesslerfoundation.org/media/displaynews.php?id=220#.T2xlkIpSxx0.facebook

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