Category Archives: seasonal adjustment

divine donut, donut, Patients Like Me, seasonal adjustment, Time, Tomorrow

For All the Tomorrows For Which We Live

2 Comments
I deny thee for the lie you pretend to be. 

It’s often easy to think we have time. It’s so tempting to say “I can’t wait till tomorrow when I will be able to…” There’s always tomorrow…right up until there isn’t.

These sayings sound trite, so petty. They seem childish once one is confronted with a progressive disease like MS. Even with relapsing remitting MS, I can’t be sure tomorrow will see an easing of symptoms. With every relapse, there is a new, usually worse baseline. Even without a flare, the baseline isn’t level. We all age, and MS ages me faster. Still, I think MS has made me more aware than ever of the good days, even the good hours, minutes and moments. Tomorrow is an illusion whose only real value is contained in all the nows which bring it to exist.

This past week, I was lucky enough to be pointed towards another blogger with MS. Unfortunately, I was pointed to his blog after he passed. He had an amazing way of putting things bluntly with eloquence. My favorite quote came from my favorite of his posts, one on slaying dragons, and it goes right to the heart of making the best of what you can do today.

“Even the healthiest of us have battles throughout the day. We all have our own stories, and as insidious as it may appear to the world, nobody seems to go unscathed. Humor can truly ease the situation. Learn to laugh at yourself a little. I need you all to do me this favor. The next time “running” to the store, “jumping” in to the shower, “grabbing” lunch for the kids, or even “preparing” for the day becomes in anyway a pain in your ass, it is necessary to perform one of two options. Either thank God profusely for the ability and fact you can actually perform and accomplish these tasks without trepidation or consciousness, or take my approach, get your head on straight, make a few jokes, and SLAY YOUR DRAGON! There are no other options.”

(My favorite moments of this week on the next page)

My favorite nows of this week were playing “Go Fish” and Tic Tac Toe with A and watching O concentrate at Tae Kwon Do. To know them is to know how far they each have come to enjoy those simple day to day things. For A, the simple games of logic weren’t easy. To get her to concentrate on winning and not just avoiding losses is a huge change of perspective. She was moving beyond just getting by preferring a tie to a win because then both people are not sad (note, neither being excited for winning either).  This was no small change even though it sounds small.  For O, concentration is not his long suit, and watching him stand in line without goofing off or running headlong into the mirror wall.  With K, I loved watching her run up the sidewalks and down the sidewalks of our block stopping to inspect the plant with colored leaves.  How can a little girl who can see only 2 feet move with such confidence where everything is unknown?  Awe inspiring is the only explanation I have. Progress rarely seemed so rewarding as this week. These moments make all the pain and tiredness seem but trifles.   Live now. 

As my kids grow, I think of the quote from Samuel Johnson, “What we hope ever to do with ease we must learn first to do with diligence.”

Follow up on Seasonality of MS:

I got an email response to my request for data from PatientsLikeMe.com. I had written them asking for access to their data on MS symptoms to look for a seasonal effect using programs I used for work to look for seasonal adjustment factors. Their research department wrote me back saying they had looked for a seasonality of flares and found no significance to the results. Note the “significance” is a reference to statistical significance not a denial of meaning. They also confirmed pharmaceutical companies already use suspected seasonality to make their drug tests look better, and said they thought the idea of looking for a seasonality of symptom reporting could be an interesting research idea. I wrote them back offering to run data through my work’s SAS programs using ARIMA modeling. I’m happy to hear they have looked at seasonality in the past, and if symptoms prove to be better reported than “flares” it will tell other users of data from patients like me which types of data are better reported. The knowledge of how data is self reported is potentially far more useful than even the results of this one idea. The implications could give more value to the results of other studies of self reported symptoms across other medical conditions.

Now after all the talk of disbelief in tomorrow, I must retire.  Today has been packed, and tomorrow will I hope be even more so.

From following morning, the story of the divine donuts:

On the way to work, I was exhausted.  Something about flying 2 days in a row and spending a day giving presentations left my get up and go states away.  So I decided to stop for coffee on the way to work, something I rarely do.  While getting coffee, I saw Crispy Creme donuts and thought they looked too good to pass up.  Since I was splurging anyway, I got a donut too.  Sadly, as I was opening the car door, I dropped the donut with my stupid, clumsy tired MS hands.  I chuckled to myself, “OK God, I can take a hint.  I’m not meant to eat a donut.” 

When I got to work, this is what had been put out for the office to share:

I ate my donut giving many thanks to the lady who brought them and a separate silent thanks mixed with a good laugh…Okay, I ate 2.

  Laughter is good for the soul, even if the inspiring donuts may not be as good for the body. 

Share
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

Share