Category Archives: fear

anxiety, brain training, dementia, fear, MS medication, preventable dementia, steroids, Writing

Name Your Fear

As A and O are kids plagued with anxiety, it’s not a shock we’ve seen a huge uptick in behavioral symptoms from temper tantrums to inability to stay in bed again to potty issues to… as they go through a period of their life filled with huge changes at the beginning of this school year..  At age 7 and 8, I thought we would be beyond many of these issues but dealing with them is where we are.  As we remind them how they know what they should do, it becomes obvious they just aren’t at a point emotionally where they are even processing what is wrong.  There is simply too much going on, and all of it is frustrating.  One of the things we have initiated is to ask them every night before bed to name at least one fear they had during the day.  Our hope is in its naming either they can take control of it or we can for them once we know it. There is a power that comes from the articulation of ones fears.
When it comes to me, I find such thoughts small solace reading this past week how questionable the use of steroids are for MS patients who have flares:  steroid study . Great, it may seem odd to worry about such things as I have gone a relatively long period without a flare.  Still, I keep reading conflicting studies about MS rebound post Tysabri.  It seems every set of numbers released gives me worse odds than the numbers released prior.  Therefore, I keep track of Tysabri numbers and the possible treatments likely to follow it should I stop taking Tysabri.  
It would be nice to think there was a point to the metal tasting emotional roller coaster rides I have had taking steroids in the past or might take again.  I always hoped they shortened my relapses.  Maybe they did.  Still, this study seems to suggest we end up with the same new baseline whether we take them or not.  The only difference is arriving at the new baseline 2 weeks earlier with steroids.  I note so much is still unknown.  Originally, I never thought to ask if they left me in a “better” place than had I not taken them.  Now with the new information saying 2 weeks earlier, it still does not say I will be at my worst for 2 weeks longer or shorter depending on my choice.  Where is the delay/improvement taking place in the healing cycle, at the beginning or the end when I am mostly better?
(For more continue to the next page)

 

My second big MS fear was articulated in the same blog (different post), brain training.  The writer wants MS listed as a “preventable dementia.”  Great, while I know it is not his intention to lay blame at the patients’ feet, it certainly sounds that way when we start calling anything “preventable.” I recognize the author means “preventable” as a way to encourage doctors and patients to start immediately to do what they can to slow down the progress of MS through strong disease modifying drugs or therapies.  I just hate thinking I have dementia even as my rework rate (amount of time checking and correcting simple tasks I attempt) skyrockets these past few weeks.  I know J sees it in me.  This just seems another way to label MS patients with too broad a brush stroke for my tastes.  I will also admit much of my resistance to these terms originates from my fear of growing less knowledgeable rather than more.  I find it scary to think I may have reached the point where I will lose more knowledge faster than I am capable of gaining.
Now the article and study did point out training our brains helps.  I hope so.  I blog in hope of better training my mind.  It’s an exercise is summing up life as I and my family experience it, making the good better, the bad less bad, and the fears more tolerable. 
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On the fun side, our family went to a horse jumping competition over the weekend.  Naturally, the first rider fell off and had to be taken away in an ambulance.  This did not do wonders for A’s anxiety as she loves riding horses.  Thankfully, the rest of the show went off well, and we sat next to a woman who had been jumping horses for the past 20 years who explained what each rider and horse was doing as they went through the course.  I think that time alone was probably worth the admission for A.  We also got to tour an old car show happening on the fair grounds at the same time.  It is not every day we get to see old legends like Ford’s from the 1920’s, back when business leaders sought to price their goods and wages to make all workers able to buy what they have a hand in making.  I kept looking at the car less as a peace of automotive history and more as a peace of the economic history that promoted the strength of American consumerism.

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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:
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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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