Elizabeth Warren was the best candidate running and sexism/misogyny was why she lost

Sen Warren: ”If you say, 'Yeah, there was sexism in this race,' everyone says, 'whiner.' And if you say, 'No, there was no sexism,' about a bazillion women think, 'What planet do you live on?' I promise you this: I'll have a lot more to say on that subject later on." pic.twitter.com/VkRA8js6ze

— NBC Politics (@NBCPolitics) March 5, 2020

A long time since I last posted here. And no, i don't have the Coronavirus

Coronavirus vs SARS/MERS/Ebola/Swine Flu 😬 pic.twitter.com/iRmeV0kWoI

— Dave Jones 🏴󠁧󠁢󠁷󠁬󠁳󠁿🏳️‍🌈 (@WelshGasDoc) February 25, 2020

TV coming not soon enough

The old world is dead. It's time to create a new one.

season_3.0. #MrRobot. 10.11. @USA_Network. pic.twitter.com/abr7zEEWiK

— Mr. Robot (@whoismrrobot) August 4, 2017

Healthcare and Some Videos

I haven't written in a while, but these videos are so good, I want to hang on to them and watch over and over again.

"You can actually pinpoint the second when his heart rips in half." pic.twitter.com/nDOlZq1mZk

— Parker Molloy (@ParkerMolloy) July 28, 2017

And fine, here it is with the Curb Your Enthusiasm theme music: pic.twitter.com/V1y1hWxO7T

— Parker Molloy (@ParkerMolloy) July 28, 2017

BAH GAWD THAT'S STEVE AUSTIN'S MUSIC pic.twitter.com/vfTwNAC9F3

— Timothy Burke (@bubbaprog) July 28, 2017

Link in the comments for any others I should add.

Hillary Clinton does not have Parkinson's Disease

I am going out on a limb and stating this.  Hell, there's probably more evidence that Bill has Parkinson-like symptoms, but not being a neurologist and having spent no time one-on-one with President Clinton, no one but his doctor would know, including myself.

And that is the reason that I can state Hillary Clinton does not have Parkinson's Disease.  Parkinson's is a very individualized disease with many symptoms that may or may not be related. Most folks with the disease are actually misdiagnosed for anywhere from months to years after first symptoms appear. I took two years (symptoms at 32, dxd at 34) and I've heard some patients who took 5-10 years (usually, they were young onset, like myself). So, trying to use symptoms to diagnose someone is ridiculous in and of itself.  Also, there is a particular series of tests/movements a neurologist goes through to diagnose someone and differences are usually subtle and often require hands-on the patient to perform.  So to say that you know someone has PD because of one or two Parkinson-like symptoms is absolutely ridiculous.

On the other hand, even if she had PD, who cares.  She is very active, like anyone running for President and that is considered the best way to fight the disease.  I know folks who have had the disease and run multiple marathons every year. For example John Ball, a Vietnam Vet who wrote, Living Well, Running Hard has had PD since the 80s and still runs the LA Marathon most years.  My wife and I befriended a woman who has had PD since the 90s and is on pace to run about 50 marathons this year and will hopefully make the Runner's World cover for December.  You would not call either of these folks feeble or weak, and I wouldn't call Hillary Clinton that either.

DBS Progress Report

I've officially been off most of my PD meds for over a week now.  Last week, the nurse who does the programming of my system, increased the voltages in my left side (right brain) and I was able to walk normally, with no meds.  I'm still noticing some occasional tremor, like while I'm typing, but I have had no meds for over a week.  I will continue to play with my voltages and meds to see if I can improve my symptoms some more, but is already having a dramatic effect.

Some improvements besides reduction in meds:

1. Walking - This is probably one of the most dramatic improvements.  I am walking relatively normally and even run as well.
2. Sleeping - This actually ranks up with walking.  I have been sleeping 7-8 hours straight through for the first time in years.
3. Bathroom urgency - Related to the sleeping, I can hold my bladder better and can sleep through the night as well.
4. Speech - While occasionally slurred when I'm tired, I and others have notice a less staccato method of talking and thoughts float off my tongue more clearly.
5. Tremor and dexterity - little or no off time.
6. Dyskinesia - gone when I don't take meds.

To put it bluntly, my surgery is working even better than I hoped.  Here's to it continuing.

It's been a while, but I had brain surgery and it worked!

I had brain surgery again, just over two weeks ago.  I was released from the hospital the day after surgery and here's the shot my wife posted to Facebook, with the caption, "Who had brain surgery yesterday and was already released today? This guy!"

They turned my leads on the following week, and to say there is a difference between now and then would be understating the case by orders of magnitude.  I am so happy with how the new leads are working after just the first programming session.  My walking has improved, my tremor has reduced, and my med intake has dropped by over half.  Right after programming, I took an extended walk with friends to a bar in downtown San Francisco.  I was doing great, until my meds kicked in and my dyskinesia went crazy, that was when I realized, I would need to dramatically reduce my meds.  I am still figuring the med levels and times that work well for me; however, I am doing well and feeling better than ever.

Thanks for all the well wishes over the past two years since I began looking at having my first surgery.  I don't wish my experiences of a stroke, heart attack and finding the leads had moved to finding a new surgeon and having the new leads installed on anyone, but hope others can find solace in my experiences and know that there is good news, eventually.

Net Neutrality, Why you should care.

Since Obama has come out in favor of Net Neutrality, I guess it was inevitable that some folks would be against it. For those folks, get your head out of your ass.

You really want to trust AT&T, Verizon, Comcast, Time Warner, etc. to do the right thing and keep the internet equal for everyone.  These are the same companies that cause citizens of the USA to have the highest cable, cell phone and internet costs of any industrialized country and yet our internet speed choices are lower.  These are the companies that fought and "encouraged" legislatures across to US to deny small communities the ability to offer their own citizens free wifi.  Just to put it in perspective, here are a some statistics from 2012:

Americans pay four times as much as the French for an Internet triple-play package—phone, cable TV and Internet—at an average of $160 per month versus $38 per month.

The French get global free calling and worldwide live television. Their Internet is also 10 times faster at downloading information and 20 times faster uploading it.

America has gone from #1 in Internet speed (when we invented it) to 29th in the world and falling.

Bulgaria is among the countries with faster Internet service.

Americans pay 38 times as much as the Japanese for Internet data.

Now, how does this relate to Net Neutrality?  The reason these companies want to eliminate Net Neutrality is that they can then set up tiered internet service.  Therefore, if you're on a Comcast pipe, good luck getting Netflix or Amazon Prime movies at any speed worth a damn.  But that's the least of it.   Walmart.com can now pay Comcast to basically slow down service to it's competitors or at least create a noticeable difference between loading Walmart.com and Amazon.com, that if you want to shop online, you'll basically have to figure out which companies have paid the pipe(r).  You'll be choosing your internet provider, not only by how good their customer service and network is, but by which companies are paying for faster access to their network.

This also puts US companies at risk, because they will be behind an artificial wall that slows down their service.  No small start-up is going to be able to pay for top tier prices so internet start-ups will have a significant advantage if their hosted outside the US.  Less innovation will happen in the US compared to rest of the world, and we will lose jobs as well as opportunities.

But go ahead and be against Net Neutrality, just because Obama is for it.

Parkinson's since 2006, Brain Surgery & Stroke 8/13, Heart Attack 2/14, Triathlete Yesterday

This is what my wife wrote yesterday:

In August 2013 my husband had brain surgery and then suffered a stroke afterwards. Recovered. In February 2014 he had a heart attack. Recovered. Still battling Parkinson's Disease. And today now he became a triathlete for the first time. So proud, so amazed, so inspired!

I had a great time and this will definitely not be my last.  I hit my goals of finishing and my time was about what I expected.  This was the 40th annual Mission Bay Triathlon in San Diego, the first triathlon ever.  The race was a lot of fun, although the swim entry is crazy and not for the light of heart.  My friend who raced with me and myself hung back a bit during the start, so we wouldn't get hit or kicked.

I'm not going to do a whole race recap.  I just want to emphasize that if I can do this with my medical history, especially this past year, you can as well.  Get up and start moving.

Parkinson's Vaccine: What does it mean for those with PD and those who will eventually get PD

The Parkinson's vaccine that has been developed in Austria by biotech company AFFiRis AG has recently gotten a lot of news.  They announced positive results of a phase one safety study for a vaccine that could slow or even stop the progression of Parkinson's.

While this is great news, the unfortunate thing is also stated in that first paragraph as well, where it states the vaccine may only:

slow or even stop the progression of Parkinson's

 I actually talked to my neurologist about the vaccine and while it will aid new patients who are diagnosed with Parkinson's and may also point to an indicator that can be tested before symptoms begin to appear, the protein alpha-synuclein, this will not reverse the effects of Parkinson's disease, because those cells are already dead and clearing the alpha-synuclein that had a part in their death will not bring them back.

Therefore, for the millions with Parkinson's Disease, we still require a methodology for replacing the dopamine those cells used to produce, via medication/DBS, or the actual cells themselves, via stem cells, gene manipulation or some method someone has not yet thought up.  I don't want to be a downer, this vaccine is great news if it really works; however, for those of us already living with the disease have even further to go.

Also, remember, I am just a patient so take what I say with a grain of salt and discuss it with your doctor.

Surgery delayed

I am currently on anti-platelet medication since I had my heart attack and stent placement in February.  My cardiologist told my neurosurgeon that he wanted me to stay on the drugs, continously, for at least a year.  Thus, my neurosurgeon recommended we wait until next year to do the follow-up surgery to fix my DBS.  Until then, I have it turned off and will basically be taking a my medication and hoping my progression doesn't happen too quickly.  

I also saw my neurologist and she asked me what my goals were for the surgery so that she could go over them with the surgeon and make sure I was being realistic.  I basically have three main goals:

1. Get rid of the dyskinesia that has been increasing as I take more and more medication.
2. Get rid of the tremor during off times.
3. Reduce my total medication intake.

Some might be surprised to see the gait improvements not on there; however, I've been learning over the past year that DBS does not really provide gait improvement.  Yet, by needing less medication over the day, I will have more on-time and therefore will have more time with better gait.

While I hate having to wait 6-8 months for the surgery (my insurance company had already approved the surgery before they had contacted my cardiologist), I know it is the best decision and we want to minimize risks as much as possible.

In the mean time, I am now training for the Mission Bay Triathlon in October and will be able to complete the race since I will not be having surgery before the date of the race.  You can track some of my training progress over in the sidebar, where I will be posting my training runs, bikes and swims to daily mile.

Once more unto the breach, dear friends, once more

My neurosurgeon confirmed that the leads have moved up 10 mm from the location they had placed them.  His scheduling person is contacting my cardiologist to get clearance for me to have another surgery.  Once I am cleared, the neurosurgeon and neurologist will go back into my head and try to figure out why the leads moved.

My surgeon said that there will be three possible solutions he will try, in this order:

1. Put the current leads that are in my head back into place by just moving them back down the 10 mm.  He feels this will be the least risky/invasive.  After they are in place they will assess that I am still getting good results from the leads when they are placed correctly.
2. Remove the current leads and replace them with new ones.  Since they know I had good results during surgery and the first month after (lesion effect), he feels replacing the lead to a known location would be the second best option.
3. Remove the current leads and place new leads in a different target region of the brain.  Currently, the leads are supposed to be located in the GPI region of the brain.  The surgeon would place the new leads in the STN region which is more susceptible to cognitive issue complications, which is one of the reasons my surgeon placed the original leads in the GPI region.

He is also planning to check the locking mechanisms that are used (he said there are three) to see if a failure in part or whole of one or more of the locks may have caused the leads to move.  He also said, he may use a small metal piece to hold the leads down even better during the next surgery.

While I am hesitant to have another surgery after having suffered a stroke the first time, I cannot continue to live like this.  I struggle every morning and most evenings before bed to just walk to/from my bed.  I struggle to get to the bathroom in time before I have to go.  I get frustrated with myself as well as the kids, the dog and my wife when my meds are off and they want me to hurry or move.  When my meds are off, I get so tired just trying to do everyday activities, but it is also a struggle to sleep, because every way I turn is uncomfortable and I struggle just to turn.  Finally, I am taking so many meds, that I worry that the meds will soon enough start causing really bad side effects.  The fact that I can live and work on the amount of medication that I am currently taking is incredible.

So, wish me luck and I'll keep posting before and after surgery to update folks on my progress.

Good News/Bad News

As many people who read my blog know, I've been struggling with the programming of my DBS for the past 10-11 months.  After I had the surgery, I had what is known as a lesion effect.  Basically, my tremor went away completely even when the leads were not powered on.  This lasted about a month or two, and then the tremor came back with a vengeance.  It has not really gotten better since and none of the settings we've tried have seemed to work.  My walking still stinks and I'm either taking the same amount or more of my Parkinson's medications.

Back in May, my neurologist had me do a CT-Scan to check the lead placement.  Well, the neurologist who was in surgery with me and who was performing my most recent programming called yesterday to inform me that my neurosurgeon had examined the CT-Scan and compared it to the scan I had after surgery when they were diagnosing my stroke.  It looks like the leads of the electrodes have moved, possibly on the order of 10 mm.  While that might not seem like a lot, in brain surgery terms is huge.  It basically moved the leads out of position that could help me and explains why my DBS is not working the way I and my doctors would like.

What this means for me, I'm not sure.  Since my heart attack in February, I have been on blood thinners.  So, surgery for me is riskier, because I have to discontinue taking that medication probably for a few weeks before they can schedule a new procedure.  Also, if they can put the leads back where they are supposed to go, will it take a completely new procedure or can they do it without opening my brain, and with a tremor starting to appear in my left side, is that the right decision anyway?

I'm supposed to meet with my neurosurgeon next week.  Once we meet, my wife and I will discuss my options.  It is scary and exciting.  I want the DBS to work, but we will have to wait and see what happens.

Sleep Data over past month

I bought an Jawbone UP24 and am starting to graph my results using tictrac.com. Below you can see my sleep over the past month and how it is actually trending up.  I believe this is due to the fact that I'm actually measuring it.  Nevertheless, I am sleeping more, which is good.  The top line is deep sleep, the middle line is light sleep and the lower line is awake time, which includes my nearly daily middle of the night wake-ups.  If you have Parkinson's you understand. 

Promising Drug Therapy for Parkinson's won't be Researched, yet

What if I told you there was a drug that could cause the Mean total score on the motor Unified Parkinson Disease Rating Scale (UPDRS) to improve significantly from 33.1 at baseline to 23.2 after usage and the analysis of specific motor symptoms revealed significant improvement after treatment in tremor, rigidity, and bradykinesia.

If you were a Parkinson's Patient, you might say, sign me up and if you were a doctor, where's my prescription pad.  However, if you're the US government, you'd be saying no, no, no.  Why? because while an initial study done in Israel showed these results, the title of the study was, "Cannabis (medical marijuana) treatment for motor and non-motor symptoms of Parkinson disease: an open-label observational study."  This research is thus nearly impossible to undertake in the US because, federal rules state that experiments can use marijuana only from a single, government-run farm in Mississippi. Researchers say the agency that oversees the farm, the National Institute on Drug Abuse, has long been hostile to proposals aimed at examining possible benefits of the drug.

In the last 10 years, the government had approved just one U.S. research center to conduct clinical trials involving marijuana use for medical purposes — a UC San Diego facility created by the California Legislature.  However, on Friday:

the Obama administration handed backers of medical marijuana a significant victory Friday, opening the way for a University of Arizona researcher to examine whether pot can help veterans cope with post-traumatic stress, a move that could lead to broader studies into potential benefits of the drug.

This is the start and while I don't believe that Marijuana will be the wonder drug some people think it is.  It will be scientific research that proves or disproves that theory, not some anti-drug politician who still believes that evolution is only a Theory.

Don't make light of your symptoms

So, I was throwing up Sunday morning around 1:00 am, which I figured was my monthly gag fest due to Parkinson's Medications.  I threw up a bit, but my chest was also hurting.  I didn't take much thought in this, because I was throwing up at the time, but the chest pain continued throughout the night.  When my wife woke up around 6:00 am, I told her of both the vomiting and chest pains and she insisted that we go see a doctor. This is a normal fight between us, as when I was first having PD symptoms, I didn't want to go and when she first had back problems, she didn't want to go and see her doctor.  Nevertheless, I knew better and insisted that we go to the nearby urgent care facility instead of an emergency room or calling 911.

We arrived at Urgent Care at 8:00 am when they opened and I was third in line.  Because I was complaining of chest pain, they took me right away (ahead of the second person) and took blood and ran an EKG.  I told my wife to take the kids to Sunday school and after I was done, I'd get a cab to take me home the 1-2 miles.  Needless to say, I didn't go home.  The EKG read normal but the blood test showed an elevated level for one of the heart enzymes, specifically my Troponin level measured 0.33 which was higher than the acceptable level of 0.10.  Because of this, the urgent care doctor called the local hospital and had me admitted and sent there via ambulance.  In the mean time, I had called my wife to let her know I was being hospitalized and where I would be.  She took the kids out of Sunday school and met me there as the ambulance arrived.

Unfortunately, do to flu season, the hospital would not let kids under 14 into the patient rooms.  Therefore, a friend sat with them as we began to talk to the cardiologist on call for Superbowl Sunday.  They observed me for a few hours and then retook my blood test after eight hours later.  Everyone expected my levels to drop or stay the same because both a subsequent EKG and a ECHO cardiogram the doctor did with a handheld device showed no sign of any problem with my heart.  However, the Troponin levels actually had a 10x increase to 3.9 from the previous level of 0.33.  We were all very confused.  They scheduled me for an angiogram the next day which is  the gold standard test to see if there are any problems and told me it would occur probably around 11:30 am.  The angiogram did not occur until about 4:30 pm Monday afternoon.  However, it showed a nearly 100% blockage in my circumflex artery which they immediately cleared and placed a stent in it's place to prevent further blockages.

So, yes, I did have a heart attack at age 42.  Luckily, it was the circumflex artery and not another.  Also, the EKG and ECHO tests showed no real damage occurred to my heart.  Therefore, once again we were very lucky.  I was given an additional 3 medications to use at least for the next year as well as baby aspirin.  I am also not going to be racing in the LA Marathon next month for Team-Parkinson, but will look into another race this summer.  I was released from the hospital today, but will see my cardiologist in the next couple of weeks to do a stress test and discuss with him my future options.  Also, with the new medications (particularly the aspirin and additional blood thinner) I probably will not have an opportunity to discuss making my Deep Brain Stimulator bi-lateral.

Take care, and I hope if you get anything out of my experience, don't take new symptoms or feelings or pain lightly.  If your gut tells you there seems to be something wrong, go with it, because there just may be something wrong.

I should pay my plumber more than my neurosurgeon

Yumabev made a joke about one of my posts on twitter, that I've been mulling over for a few days.

@yopd1 I know what u mean, my DBS surgeon got paid $1500 for drilling holes in my head & my neighbor paid $2500 for a plumber to fix a leak
— Parkinson's Humor (@YumaBev) December 9, 2013

After a few days, I realized, no shit, her plumber should be making more.  You see, when you get a bill from the hospital, it is usually includes everything, including that $20 aspirin that they charged you 5 times for, but you only took once.  But I digress.

Included in that bill is the amount that the neurosurgeon is paid for the 5 hours of surgery that he performed on my head.  However, the neurosurgeon is only being paid for his time.  He didn't bring in a scalpel, anesthesia, gloves, gowns, let alone the actual device that was implanted in my head.

When you pay your plumber, you are paying for everything, including all of his overhead and expenses.  The better question is after the plumber paid for vehicle expenses to get to your home, parts, a staff at the office to take your appointment, all the inventory he/she has to carry, let alone all the specialized equipment he/she had to buy and maintain, what is he taking home at the end of the day and what is the neurosurgeon.  I'd say the neurosurgeon is taking home an amount much closer than to $1500 than the plumber is, let alone the $2500.

Why Are American Health Care Costs So High?

Best explanation I've seen of the problem with healthcare in the US. EVERYTHING is overpriced and costs to much and there is no sense in why things are charged except to screw over the patients and get as much money out of them as possible. Most interesting fact: We spend more on government provided healthcare in the US per capita than any other nation, but don't provide everyone with healthcare.

How is anyone supposed to make sense of health care costs?

I got my bill for the hospital stay when I had my DBS electrodes installed.  Granted this did not include my stay at rehab due to my stroke or my subsequent outpatient surgery for the pulse generator.  What pisses me off, confuses me and/or frustrates me is the nonsensical billing system we have in the US.

Without giving exact numbers, the hospital billed my insurance company approximately $171k for my surgery and stays.  The insurance company paid just about $24k of that.  There is also a line that states adjustments for approximately $146k.  If you look up hospital adjustment online it states,

“Adjustment” refers to the portion of your bill that your hospital or doctor has agreed not to charge you.

Now, I understand that insurance companies get discounts for bringing in large populations of folks.  However, my insurance company paid basically 15% of what the hospital charged.  I wonder how many folks without insurance or with worse insurance than mine could possibly get the hospital even close to that value.

The fact that most people probably don't know this is even more incredible.  When I hear of doctors not wanting to take ACA or medicaid/medi-cal or some other non-premium insurance, I just have to laugh, because the premium insurance companies are definitely not paying full price, let alone wholesale prices.

UPDATE:  Another issue with this is the way co-pays are calculated.  Luckily, my insurance is a flat fee co-pay for a hospital stay.  However, if I had a percentage based co-pay, my co-pay would have been calculated based upon the original hospital bill of $171k.  Therefore, I would have been liable for 10-20% of that bill up to my out of pocket maximum, while the insurance company knew it would be paying the lower fee.

Either the insurance company is paying less than even $24k for the surgery if my co-pay is calculated based upon a percentage of the $171k.  Or the hospital is getting more money because they can take the $24k the insurance company agreed to plus my co-pay.  Either way, there is no incentive for either the hospital or the insurance company to bill the patient correctly and the patient gets screwed.  The higher the hospital makes the bill, no matter what they've negotiated with the insurance company, the more money comes out of the patients pocket while the insurance company possibly reduces what they are paying the hospital or the hospital brings in more money and the patient gets screwed.

Conservative 'logic' on Obamacare

A relative has been going off on facebook for weeks/months about Obamacare.  I've stopped engaging because he is always changing the subject and is so over the top that I just got tired of it.  However, I'd really like to understand the logic, if there is any.  So, based upon his posts, this is what I understand is his thinking.

The fact that people under 27 have an option for lower price insurance under their parents plan is bad, but the fact that they don't buy insurance when they are young was okay because they shouldn't have to buy it and their irresponsibility is their problem, even though those of us who bought insurance were covering those who didn't in the past because they would usually skate on the bills when something did happen. You are also okay with the fact that if young people waited to buy insurance, they would not be able to after the fact because of the no-pre-existing conditions clauses or they often were buying cheap insurance policies that would drop them at the hint of filing a claim because of some technicality the insurance carrier found or they'd often reach their lifetime max just when they'd need their insurance the most.  

The biggest issue to worry about with respect to access to insurance is that a website doesn't work from the get go, even though folks have three months to sign up and statistics have shown that historically younger people wait until the last few weeks to sign up.  And the costs are way too high, even though the CBO, a non-partisan entity, has shown that the ACA will actually reduce deficits.  And the fact that most of the dropped policies are irrelevant to the 90% or greater that do not buy insurance on the individual market and 75% of those who buy on the individual market are eligible for subsidies does not matter because one anecdotal story or even 100 anecdotal stories are more important than the millions who have already seen the benefits of the ACA even if they are one of those anecdotes.

Am I missing anything?