Category: "Other Health Issues"

RIP: Peter Hsu - 1920-2013

Earlier this month, I took a little staycation (during which I did my "Narcolepsy: Not Alone" photo)...didn't get all the things that I wanted done, and watched even less TV than I do normally. During this time, I didn't check my 'work' email accounts (including the gmail account that I had associated with my work smartphone, which I haven't had one for a long time since I opted to downgrade to a basic prepaid phone on my own dime.)

When I returned to work on August 12 and started catching up on my email, I found a bunch of emails from my cousin June. My grandfather likely passed away due to sudden cardiac arrest Friday night (August 9th, 2013). He wasn't discovered until Saturday morning, slumped over in his walker, when my grandparent's helper showed up. He was 93 (June 12).

Guess there were other emails to my other gmail account (from my parents), but that account has become overrun by emails from places I've shopped and many discussion groups. Need to make more filters to clean things up.

Anyways, I was in shock. I was quite close to him, he's in many of my early childhood memories. Perhaps because he was the other tall person, we shared some common interests (namely photography and home stereo) growing up and he facilitated my growing interests and lead me in how passionate I am in those areas. Which has led me to being equally so in many of the other areas that I've gotten into both personally and professionally. I'll probably never have the a home stereo system like the system that drew my attention in Taiwan, Photography continues to be a part of my life despite it becoming harder and harder to do. It was how my tremor was making it difficult to enjoy my Photography hobby that had led to the diagnosis of Essential Tremor, not that it was making it hard to do precise mouse clicks at work. I've never really been a big GUI person....and as my Tremor progresses, its not likely to change....

While I hadn't seen him since 2010 when I visited him for his 90th birthday, which as it happened was also during an email move at work. In my mind there was that there ought to be a family reunion in 2015 for my grandparents 75th wedding anniversary (and 95th birthday), where we haven't had much of a family reunion since my aunt Clara had passed (in 2004). There was also the thought of a reunion in 2020 for his 100th birthday.

That makes 2000 our last family reunion (and my first cruise), which was for my grandparents' 60th wedding anniversary and my grandfather's 80th. We did try to have a reunion in 2005 (my third, and final :?:, cruise)...but no Leo, Cathy or Charissa...and my grandparents eventually backed out. They haven't been into air travel for some time, and we weren't able to find a cruise around Los Angeles. We settled on one started/ended in San Diego with arranged car service to transport them to and from the port. Still it was a good cruise, even though I was flying back to so that I could be laid off from my previous job on Christmas Eve.

Then some guilt crept in as I then became angry that I didn't know about his death sooner. Along with trying to figure out bereavement leave policies and whether I could get an airplane ticket, etc. to attend his funeral on August 20th. I managed to mostly keep it together and push through the rest of the day at work. When I finally got home, I was starving and much sadness came in bursts.

Eventually, I call my parents to find out what travel plans they had to give me an idea of what plans I should make for my trip. And, then it was to see about finding an airplane ticket....I had been combing sites earlier looking for tickets for other upcoming trips, like NN Conference in October and Chicago Tardis in November. Which I probably should pull the trigger on purchasing soon, but there's a staging of when I purchase such things to manage the hit on my credit cards....

After some playing around, I find a combination of flying in the morning of August 20th and flying back on the 21st for $440...with ATL being around $470 and ORD being around $415. But, its only for a specific flight out of MHK and a specific flight back to MHK. Moving to either side, practically doubles it.

Also, I had to leave the booking with no seats selected, because the only seats it says are available are preferred or extra room seats, so two levels of extra charges. So, I left it to see what it would do when it tickets, which isn't until the next morning. It has seat assignments for MHK to DFW and DFW to MHK, but neither of the LAX flights have seats.

Should probably get to buying ATL ticket soon (now), though was considering buying ORD first given the notes of only a few seats left at the lowest price.

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Not everything that ails me is directly from my sleep disorders.

Meant to write this sooner, but wanted to do some research online on Costochondritis and Diclofenac....but never seem to remember when I had a free moment....

Anyways...somewhere about 7 month ago, I woke up one morning with severe lower right chest pain, and it made it difficult to sit up to get out of bed....ended up rolling out of bed. I figured it was a muscle injury....not sure what I did during the night to cause it.

Wearing a rib belt helped with the pain, so I used one on and off. Though as the frequency went up, I started wondering if there was something wrong with my CPAP/Sleep Apnea. Since, I recalled from last download that my AHI creeps up slowly during each sleep set, and get's much higher in the second sleep set than it did in the first. Usually reaching ~10 about an hour before I wake in the morning. So, perhaps the problem is indirectly from the management of my sleep disorders - AutoCPAP & Xyrem.

I wondered if my AutoCPAP was set too high. Since, I had come across my CPAP titration when I was re-reviewing my sleep studies to see if what they said at the NN Conference about a PSG could be sufficient to diagnose Narcolepsy. In fact found that the PSG said I might have it, but clinical correlation is needed. But, the doctors I have don't have time for that....they need objective tests with binary answers. Anyways...what I had found was the titration just tried 4, 5, 6, 7, 8....7's good enough use that. But, the upper limit of 15? I'm told its just a number that is generally safe enough. Plus the newer machines can tell if the apnea would respond to pressure or detect if the pressure is making things worse.

There are nights were I do hit 15, but its quite sparse and when I've been sick (AHI those nights can also get into the 20's).

But, it turned out to a major operation in getting the SmartLink software working again on my Windows XP VM. A while back after a Window patch it failed to boot, I was able to rollback and try again and again. Eventually removed some of the offending .Net packages, cleaned up and reinstalled and things were mostly working again. But, evidently I had left things bad for whatever the SmartLink software needed. So I ended up really removing all the .Net pieces...and reinstall the portions not used by SmartLink, letting the SmartLink installation install its version....

I had tried installing SmartLink on my Windows 7 VM, but that's on a FreeBSD host, so no USB2 support at the time. I have since picked up a Silex SX-DS-4000U2....

I finally was able to run some reports the morning before my next appointment with my Narcolepsy doctor. But, conclusion was that it didn't seem likely that my pain was directly being caused by things....though if it was a concern we could lower the upper limit (and raise my lower pressure again, with my 90% pressure 7.5 and 95% pressure 8.0. I had long ago raised my start pressure to 7.5 (when I was on just regular CPAP I had raised it to 7.5 until it was lowered back to 7 after the second PSG, because sleep lab can only do whole numbers....and sleep lab said I slept best on 8 :??: ) I had intended to get that done, but never got around to it. There was some discussion though on whether a new titration might be in my future, and the word BIPAP was dropped.

I hope that if BIPAP is necessary it happens sooner than later...since I'm considering getting another Intellipap AutoCPAP for when I get around to building my new go-bag. The old bag works great for my Respironics M-Series, but I don't really want to go back when next time comes.

Anyways...things continued....where it was a morning or two about every other week, or more. While looking to see if there were other things I could change related to my sleep. There'll be new pillows and bedding eventually...was going to start replacing things gradually, but seems I've decided to wait until all the items are here to replace everything at the same time. That could be interesting.

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Prescription Drug User Fee Act -- Patient Focused Drug-Development -- Docket Number FDA-2012-N-0967


Last year the FDA soliciting public comments to narrow down the diseases to focus on for its Patient-Focused Drug Development Initiative, which has the goal of obtaining the patient's perspective on certain disease areas during the five period of the PDUFA (Prescription Drug User Fee Act) V. To assess a product's benefits and risks involves an analysis of the severity of the condition treated and the current treatment options available for the given disease. This information is a critical aspect of FDA's decision-making as it establishes the context in which the regulatory decisions are makde. The FDA believes that drug development and their review process could benefit from a more systematic and expansive approach by obtaining the perspective of patients on disease severity and current available options in a therapeutic area.

They had nominated 39 diseases, where narcolepsy was one of them, and were looking to narrow the list down to 20.

And, the result is Narcolepsy got selected! :cool:

Even though there were directions on how to make the comment anonymously, I choose to include my name and I had gone with greater emphasis for Narcolepsy since it was my most recent diagnosis, and since it was first brought to my attention during the after dinner conversation aboard the Nautica Queen....though we Narcoleptics tend to have more than one thing wrong...and perhaps someday I'll get to know what my current problem is called (something I've had over over 10 years now, but only started getting really bad the shortly after the conference.)

The conference was October 19-21, 2012...I got back on the 23rd, and wrote the letter on the 24th. Since I had book Wednesday to Wednesday off from work for the conference....

The resulting list for FY 2013-2015 are: Alpha-1 antitrypsin deficiency; breast cancer; chronic Chagas disease; female sexual dysfunction; fibromyalgia; heomphilia A, hemophilia B, von Willebrand disease, and other heritable bleeding disorders; HIV; idiopathic pulmonary fibrosis; irritable bowel syndrome, gastroparesis, and gastroesophageal reflux disease with persistent regurgitation symptoms on proton-pump inhibitors; lung cancer; myalgic encephalomyelitis/chronic fatigue syndrome; narcolepsy; neurological manifestations of inborn errors of metabolism; Parkinson's diseases and Huntington's disease; pulmonary arterial hypertension; and sickle cell disease.

There will be another public process to determine the list of disease areas for FY 2016-2017.

Wonder what the future meetings will be....

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Why Asperger's Won't Exist after May 2013


From May 2013 Asperger's Syndrome will no longer a a diagnosis. The wide diagnostic area that is the Autism Spectrum, which includes PPD-NOS (pervasive developmental disorder not otherwise specified) and Asperger's Syndrome, will be simply a single group of Autism.

While the obvious concern is the stigma of being classified as having Autism rather than Asperger's Syndrome. Where we Aspies share traits with notable historical people who may have had Asperger?s Syndrome, like Albert Einstein, Isaac Newton, Benjamin Franklin, several American presidents, and artists such as Leonardo da Vinci, Vincent van Gogh, Beethoven, and Elvis. The bigger issue may be that the higher-functioning people that met the old criteria, will no longer meet the new criteria of the single Autism diagnosis and not get any help in early childhood where it may make a difference to these individuals.

The diagnostic criteria for Asperger's is things like: lack of eye contact, no delay in speech, difficulty making friends, unusual body posture or stimming, an obsession with one subject, not engaging in interactive play, severe difficulties in adjusting to change (transitioning from one activity or place to another). While the criteria for Austism has includes all those traits, except that the person will have "no speech or delayed speech".

What's this to do with me? Well, in the of the hidden gems for health care reform perhaps as part of the mandate for electronic medical records is that I get to see into my records. Was that after my last annual physical I got a health information summary, which included a listing of "Significant Health Issues". Aside from the "Hypersomnia", "Near Syncope or Cataplexy", before the most recent addition "Cataplexy with Narcolepsy".... in there was also "Asperger's Syndrome" and "Aspergers Syndrome". Guess its important to have it listed both ways?

That was kind of a surprise, when was that diagnosis made?

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Eye Exam Update

There really does seem to be a correlation between when insurance pays out and when I get results, because I got EOB for my Feb 8th Eye Exam on Feb 19th, and the next day (Feb 20th) I get a phone call about the results of the test that was performed in the Eye Exam.

OTOH, getting it on the first day back to work after returning from Gallifrey One was probably a good thing, going to Gallifrey One this year was somewhat less enjoyable for a variety of reasons and the big prescription change was one of them. Worrying about other stuff would've probably made things worse.

Anyways...I'm guessing the extra test was the Retinal Thickness Analyzer...anyways it noted that there was some thinning in my retina which could indicate glaucoma and that I'm to do another test in 6 months.

Not sure where I land on this....

Meanwhile...I went and pulled the trigger on a new pair of glasses on Feb 23rd. Hopefully it'll be on the shorter side of a week to 10 days. Still haven't decided when I'll get a second pair, and whether that second pair will be prescription sunglasses, transitions or something else.