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?

Why I will never buy a Kenmore appliance or any other appliance from Sears again

We bought our Kenmore dishwasher in 2010.  It has now broken for the fourth time.  The interesting thing is, the same part keeps failing; however, Sears still wants to charge me for my fourth Control Panel to install myself.

When it broke the first time (13 months after we bought it, one month after the warranty ran out) in December 2011, we had an appliance repairman, whom I found on yelp.com, come out and fix it because he charged $35 for the visit plus parts, while Sears wanted much more.  The other thing the repairman did was show me what he was doing so I could fix it myself if I had too.  I have degrees in Mechanical Engineering and Computer Science, so I am able to understand how to fix appliances when shown.

Low and behold, eight months later,  in August 2012, the same part goes out.  I went on SearPartsDirect.com and found the part and ordered it myself and did the install as instructed.  It then failed another 9 months later in May 2013, so I ordered and replaced the same part again.  These dishwashers are the same as Whirlpool and Maytag brands as well, and if you do a google search on control panel failures, you can find a huge number of people with similar issues.

This brings me to last month, when for the fourth time, the control panel failed again.  I called Sears, including their executive helpline, and explained the situation, including the providing the order numbers for the multiple control panels I had ordered.  I was told, that earlier this year, Sears changed their parts warranty and instead of one year, it is now 90 days.  Hmmm, I wonder why?

The dishwasher itself cost less than $400.  I have now spent over $300 in parts, and Sears wants to charge me another $112 so I can fix it again.  My wife and I decided that even with Thanksgiving coming up and 15 people over for dinner, we can do without a dishwasher for a while.  Sears sold me and I suspect a lot of people a lemon of a dishwasher and they will not get another cent from us.

UPDATE: Sears noticed my tweet of this post and called me to offer me a brand new dishwasher at 25% off.  Wow, what a deal.  That only puts me another $200-$300 in the hole to Sears.  Are you kidding me?  I also have no guarantee that this one won't fail and if I buy a more expensive dishwasher to make sure it does not fail in the future, I will be out even more money than I paid for the original dishwasher 3 years ago.  I told them that their deal was not acceptable and I would now no longer shop at Sears.

It might not be Parkinson's causing all your symptoms

I've expressed my frustrations with my DBS not really having much affect on my gait issues.  I'm still taking my entire regimen of medications and while my tremor disappeared, I've not seen much gain in any other aspects of my symptoms.  This lead me to look at other possibilities, and low and behold, I might have found one.

About 5-6 years ago, my General Physician, found that my Thyroid function was low.  He put me on a steady regimen of Levothyroxine and checked my Thyroid levels once a year when I went in for annual physicals and basically let it go at that.  About two years ago I stopped taking the Levothyroxine.  I can't really say why, just I never really felt different taking it or not taking it, or so I thought.

I went to my GP again last week and he had my blood work done and my thyroid TH level had skyrocketed.  I had done some research before the appointment and asked both him and my neurologist if thyroid function could affect gait.  Both quickly said, "Yes!"   So, there you go, my physician re-prescribed me the Levothyroxine and I am now taking it.

The problem now is that the dosage I was prescribed was what I was taking 2 years ago.  I didn't titrate up and I am actually a mess the past two days.  However, my doctor prescribed me a lower dose today to titrate up to my old dosage and told me to call his office next week.  Why am I confident that this might be a missing link?  Ever since I started the Levothyroxine, my tremor has reappeared right after I take a Sinemet and my walking gets even worse for about 20-40 minutes.  While most folks would say that's bad, to me it says, the Levothyroxine is affecting either the function of the Sinemet or what I thought were PD symptoms but are actually Thyroid ones.  So, I'm going to switch to the titrating dosage and have my programmer readjust my program more for tremor than the gait that she was working on with me (according to her, this usually involves raising the frequency of the electrical stimulation).

My programming appointment is Monday and hopefully I'll be able to function a bit better by then, especially because I've only run twice this week and I have to run twice this weekend to keep up my training schedule.  I'll report back over the next few weeks how this new med regimen is working.

Batteries were not included

I know I said I'd get this out sooner; however, life just got in the way.  Work has been very busy (that's good) and so has our home life.  I will say that my tremor is basically gone, unless I really start adjusting the settings on my DBS to a program and voltage that I don't like.  However, my gait, balance and freezing are all still there.  To label this disappointing is an understatement.

I have been charged up since the beginning of September.  The first two weeks were just low level voltage to get my brain used to electricity.  The remaining weeks we've been playing with which electrode combinations I use and which voltages, pulse widths and frequencies work best.  I am not allowed and cannot adjust anything except the voltage range  (I'm given about a 2V range per program) for one of the four programs that I are currently available to me via my remote.  If any engineers are reading this, it's basically a process which could use a good Design of Experiments (DOE), but that is not how they do things.  I might have to work on that and show the nurse who programs me the process.

I have worked through three of the four electrodes (I originally thought there were only three) and a couple of combinations as well.  I've found settings that make my meds last a very short time and I believe I've found one that may extend the effect of my meds as well.  This is a good thing and is the first very positive result.  I need a few more days of testing to make sure what I am feeling is real and not just some random occurrence.  I say this because during the early part of my testing, I had moments where I had not taken any medicine and I was walking fine.  However, these were usually short-lived and didn't repeat themselves.

My wife is understandably, frustrated as am I.  But, I am hopeful that this will be an overall positive for me even after the stroke.  The one real pain-in-the-ass part is the wire from my brain to the battery seems very tight.  When I turn or stretch my neck in certain ways you can literally see it against my skin and feel it as well.  My neurosurgeon says it's fine and I'll get used to it, but it is not always comfortable.  The battery/pulse generator was bothering me for the first few weeks after surgery, but now I hardly ever notice it, even when running.

As for running, I've signed up with Team-Parkinson's to run the LA Marathon.  When I started training, almost 7 weeks ago, I could barely run for a couple minutes straight.  I am now on my first full week of running with no stops and have run 20 minutes each time.  You can see my progress on my daily mile feed in the lower right corner of this blog, if your interested.  I have never run a marathon and the only half marathon I've done was in 1999.  However, I am positive I will be able to continue increasing my training and get to the marathon distance thanks to the great support of my family.  So, wish me luck and I'll try and get a bit better at keeping the blog updated.

Cell Phone Savings and ETF discount

I switched cell phone providers in July/August time frame to Ting.com.  I switched, while my wife stayed on Sprint because she got her phone in November of last year and the Early Termination Fee would have been horrendous (over $300).

Well, I'd say that switching was a success:

My bills the past three months:  $34.85, $32.70 and $26.13.
My wife's bills the past three months:  $69.70, $69.70 and $69.70.

This represents a drop of already $30 a month or $660 per year from $129.99 that we were previously paying in our joint phone account.  Now, Ting is offering a 25% discount on your ETF's.  So, I'll be switching my wife's phone over sooner that I originally expected.  This should save us an additional $30 per month.

The only issue may be that Ting does not allow roaming for data.  However, since most places we go nowadays either have coverage for Sprint or wifi access, I'm pretty confident this will not be a problem.

I'll update in couple months to let folks know if we are saving even more.  If you click the Ting.com link in the first paragraph, you'll get a $25 discount on your first month's service.

Rehab is my new job

Those were the words I told my wife after we learned that I had suffered a stroke during my DBS surgery.  The situation was according to my wife:

His neurosurgeon is very optimistic and told us that most people make a full recovery from this. Things in his favor are that he is young, healthy, and his right arm and leg are very strong. Also, he can still USE the limbs---if you ask him to move his leg and arm, hand and foot, he can---he is just having a hard time directing them where to go.

The situation according to me was:

• I'm the breadwinner in the family.  Despite my Parkinson's diagnosis in 2006, symptoms since 2004, I continue to work full time.  My wife is a Marriage and Family Therapist by training, and besides the fact that we both want her to be a Stay At Home Mom, she just does not have the earning potential of a software engineer.
• I have just started a new job.  I changed jobs in February, and despite the fact that they knew I had Parkinson's Disease when they hired me, I didn't want this to affect my work or my reputation there.
• It figures.  If you look at our family history, we are always facing these trials and tribulations.  My Rabbi stopped by and I told him my family's health situation often makes me feel like JOB.  It really didn't surprise me an awful lot that I had a stroke.
• My family has a community backing us up that is willing and insists on helping us.  Within minutes of posting the above message to facebook along with a request for help with our kids, my wife was inundated with comments, texts, private messages and phone calls offering everything from meals to picking up/watching our kids.  This has happened multiple times with our daughter, and I was not surprised that our friends and family stood up again to help out.

So my job was, get working on getting back to baseline.  Once my neurosurgeon figured out my med situation and wrote explicit instructions on when and how much of each pill to be administered, based upon his discussions with me, there were literally no more issues with my meds in either the hospital or rehab facility to which I was transferred.  The surgery was on Wednesday.  On Thursday, I could not even walk a few steps with a walker.  By Friday, I had walked the halls of my hospital wing with my nurse and taken a quick shower (not my head, because I could not get the staples wet).  Unfortunately, PT never came that day and I only got the walking session with my nurse.  Needless to say, my wife was pissed.  The hospital had arranged for me to be discharged the next day to an inpatient rehab facility.  While this place was further from our home (by about 10 minutes), I would get 3 hours of therapy a day, including PT, OT and speech.

On Saturday, I walked the halls of my hospital wing one last time with the PT, who apologized for me not being seen the previous day.  I felt stronger and ready to go to work at the rehab center.  I had contacted my boss and he only offered encouragement and told me to keep him updated and just get better.  I was discharged around noon and my wife drove me to the rehab facility.  Once I was settled into a room, the PT and his student almost immediately took me for a walk using just a gait belt (no walker).  The student PT walked beside me, holding the belt and offering me support when I needed it.  All the time, her instructor kept asking her questions about what she should be telling me and how I should be doing things.  Not only was it interesting to see her education in action, it actually helped me learn some of the things I could have done or will do when my meds are off and I need to pay more attention to my steps, specifically shifting my weight off the back leg and how to get my feet moving when I freeze.  She took me up the steps and using the left hand rail, I was able to walk up; however, when using the right hand rail while going down, I could not get my hand to lift off the rail and follow my body down the steps.  We finally switched to the left hand rail, and I was able to walk down without further incident.  I was encouraged, but knew it wouldn't be easy.  The OT came in and assessed my hand coordination and was impressed like everyone else with my strength, and had me do a series of tests to check my fine motor skills with my right hand which were very bad.

Sunday at the rehab center is typically a rest day, but since I got there on the weekend, I still received a half hour each of OT and PT where I saw progress.  Also, over this time, I was visited by multiple friends offering support and cookies (a very important part of the healing process).  On Monday, I felt very good.  I was actually able to type with both hands and wrote notes to both my coworkers and my wife telling them that I was typing with both hands and would be better very soon.  During the PT sessions, I was able to do everything better than the previous days and make a lot of progress.  By the end of the last session, the PT student was physically pushing me to judge my reaction to being placed off balance and make sure I could correct myself.  I had shaved on my own the previous day, but with the OT in the room (outside the bathroom door), I was able to take a shower and clean up.  I was still keeping the water off my hair, but had the best scrub I'd had since before the surgery.  My second OT session consisted of me writing my name and short phrases to check my legibility and ability to hold the pencil or pen.  Once the OT was satisfied with that, she gave me more finger exercises and I was done.  The last therapy was done by the Speech Pathologist.  This was actually an assessment since I had not had one over the weekend.  She basically asked me a lot of questions and gave me a standardized version of a cognition test I'd taken many times before at my neurologist's office.  After I answered basically, the entire test correctly, she stated that as a well educated engineer, working full-time, I was probably too high functioning for the test to measure any real impairment.  She then proceeded to ask me if I could read a book for a half hour and find some work to do for an additional half hour that I could report back to her or another speech pathologist to determine if I felt at all impaired cognitively.

The next day I had my first full schedule of PT, OT and Speech.  However, the PT had discussed having my wife at one of my PT sessions so that she could learn any techniques needed to help me stay safe at home.  This was because, five days after suffering a stroke, all of my therapists were very happy with my progress and my ability to take care of myself and get on with my life.  During my first OT session, she struggled to even keep me busy and the second session was more just gathering information for me, in case I felt that I would need therapy after I had been discharged.  The first PT session was more pushing and movement in four directions at different speeds to make sure I could start, stop, change direction and stay balanced.  The second PT session was where the PT student showed my wife how she stood at my side and/or behind me to make sure I was safe when needed.  During my last round of speech therapy, the therapist asked me the gist of the chapter I had read and the work I had done and then she gave two sheets filled with large number multiplication and division problems, which we did side-by-side to compare answers.  During this day, my therapists all did two things.

1. Recommended me for discharge which would take place the next day because you cannot receive therapy on the day you discharge.
2. Asked me whether I wanted to continue therapy on an outpatient basis.

For all of my therapists, with their agreement, I decided to not continue therapy until I got the DBS device up and working in mid-September and determined what my new baseline would be with the DBS device working.  The neurologist for the rehab center came in that night and told me he would discharge me the next day and that he even felt I was safe enough to drive since I had basically showed no signs of the stroke less than one week after it occurred.  

I was released from the rehab center on Wednesday morning and went home with my family that day, one week to the day from when my surgery started and we first noticed signs of the stroke.  It truly was a great day and I have many people to thank in my community, among my friends and family, doctors and therapists, but most of all my wife and kids.  I wrote about the women in my house last year when my daughter's halo came off.  But I'll say it again, adding my son along for good measure, I'm lucky to have my family in my life.  They bring me joy and happiness and inspire me to heal and be the best father and husband I can be.

Thanks!!

Risk of Stroke is 1-3% for DBS...Of course I'm in the 1-3%

I'll start off by saying, I am fine.  However, if you asked me or my wife that question about a week ago, you would definitely have gotten a different answer.  Nevertheless, thanks to the great work of some excellent therapists, doctors and nurses as well as some awesome support from my wife, kids, extended family and friends both in town and around the world, I am on the mend and will be back to 100%  in no time.

Let me start at the beginning....

If you've been following my blog, I've been tracking my progress toward getting a DBS device installed in my brain over the past 3-4 months.  I went through the entire screening process and was approved by both the doctors and my insurance company for surgery last week.  My sister-in-law got in town on Tuesday to watch the kids while I was in surgery and in case my wife wanted to sleep over as well in the hospital room.  I had gone through the pre-admission process on the previous Friday and had my blood drawn, vitals taken, chest x-rayed and various parts of me poked and prodded while they explained where and when I needed to be the next Wednesday.

My wife and I got to the hospital on Wednesday morning just before 5:30 am and I was pretty quickly whisked back for the doctor to place a Halo-like device on my head for surgery.  Now, most people are probably do not know what a Halo is, but since my daughter broke her neck last October, we were very familiar with this device.  In fact, we asked the doctor to take a picture of me with the device, so my daughter can see me as her Halo Twin.  However, all I can say about the device is OUCH!  That was truly the one time where I actually felt pain during the entire surgery.  Basically, the doctor used a local anesthetic at four locations and proceeded to screw four screws into my skull until they basically touched my skull.  While the local basically alleviated the pain, the fact is the Halo is basically squeezing your skull so that it stays in place and it hurts from just the pressure.  The pain did ease as I got used to the pressure, but damn it hurt and I have even more respect for my daughter's high level of pain tolerance than I did before I got the Halo.  After they placed the Halo, I was taken to get a CT scan where they screwed me into the machine, and took pictures for a couple minutes.  I was then wheeled in a wheelchair to the operating room and put under for a little while as they prepped me for surgery.

The next thing I remember was waking up as my neurosurgeon talked to me and told me they were ready to begin.  I thought they had already opened me up until, to my surprise and to-be-frank horror, I felt the drill begin to open a hole in my skull.  That's right, I felt them drilling into my skull.  There was no pain, but it was probably the freakiest moment I'd had in my life, up to that point.  I then fell asleep again for a bit, thinking, couldn't they have put me under during the drilling process?  I was soon awakened by my neurosurgeon and a neurologist that was going to place and test the DBS while I was awake.

The process for placing the DBS, is a pain-in-the-ass.  I highly recommend not using your regular neurologist just for the fact that the neurologist becomes your most hated person during the surgery, not because he/she hurts you, but because he/she annoys you to no end.  Basically, the process consists of slowly getting the electrodes into position, my doctors used the globus pallidus interus (GPi), while the neurologist shines a light in your eyes and manipulates your arm and leg to check for rigidity and other stuff (I'm not a neurologist, so I'm not quite sure).  Once they have the electrode in a position they've determined is correct, they turn on the DBS device and up the power settings to see how much room they have for powering the device until your body parts stiffens from the electrical stimulation.  The reason the neurologist is hated is because he has to do this process for all three electrodes and it just gets annoying.  The light shining in your eyes and repeated arm and leg manipulation probably didn't take long, but it felt like a long time while sitting there.

After the placement, they basically had me go to sleep during closing and woke me just before they removed the Halo and took me into the recovery room.  I had a pounding headache from the Halo, but other than that, I was in no pain.  I was very thirsty and the nurse gave me ice chips and got me up to the room as fast as the paper work would allow.  I was pretty out of it on the way up, but my wife noticed right away that my breathing was not right.  In fact she noticed as they rolled me out of the recovery room, up to my room in the hospital.  Every breath or couple of breaths, I would be shuddering after breathing in.  As I began to notice it as well, it felt like when I tried to get a deep breath, the shuddering would start.  I have no better word for it, but my wife brought it up to the nurses and my doctor. In the meantime, I had a small meal and went to the bathroom with my legs on the side of the bed into a bottle.  The remarkable thing is that I had no tremor (this is called a lesion [sp?] effect and goes on for the first week after DBS surgery).  However, as the day wore on, I began to lose the use of my right hand.  By the time the neurosurgeon-on-call came to my room and asked me to smile and point with my right index finger to her finger after touching my nose, my smile was completely lopsided and I could not point correctly.  She immediately ordered a CT scan.  Later that evening, the neurosurgeon on-call came up to discuss finding nothing wrong with the CT and noting my breathing was back to normal, I showed her I still could not grab anything with my right hand.  I couldn't even place it correctly where I wanted it to go.  She said my neurosurgeon would see the CT that night and come up with a plan in the morning.

In the mean time, the hospital staff/pharmacy had totally messed up my med schedule (waking me up every couple of hours to take my Parkinson's Meds) and not listening to me when I told them I knew better than anyone when to take them.  Finally, my neurosurgeon wrote down my med schedule according that I wanted and gave it to them to use for the rest of my stay.  NOTE to any PD patient, write out a specific med schedule that you know works for you and give it to your doctors to give to the nurses when you get admitted for anything and bring your meds in there prescription bottles for the hospital to use.  Most doctors/nurses are not aware of the fact that PD meds are not needed at night and that you might take different dosages at different times of the day. Also, some hospitals do not carry some of the latest meds (Requip ER and Azilect in my case), so bring your meds with you. The best way to prepare them for this is to give your doctor the schedule that you want them to use with the meds you want them to administer.

The next day, my surgeon ordered an MRI, saying he suspected a stroke.  By the time we got the results of the MRI, it was obvious something was wrong.  I could not walk on my right foot or use my right hand.  My surgeon told me there was a 6mm x 10mm stroke right next to the location of one of the electrodes.  He had a positive attitude about my ability to recover because while I had loss all coordination in that side of my body, I had no noticeable signs of any loss of strength, I was young and except for the Parkinson's, I was relatively healthy.  Nevertheless, I was part of the 1-3% of people who suffered a stroke during DBS surgery.  Given my family's history, my wife and I could only take it in stride and say of course I had a stroke.

I'll discuss my rehab in my next post....

The surreality of elective Brain Surgery

I am now less than a week from having my first surgery to implant the DBS.  The first surgery will be on Wednesday, August 7th.  I will be having the electrodes implanted on only my left side.  The reason for this is twofold.

1. It's considered safer and less stressful to the patient (me) to do one side at a time. This is according to both my neurologist and neurosurgeon.  They feel I'll have a faster recovery and will be able to get a great deal of benefit out of the one set on my left side, while minimizing the risk of complications.  They both know I work full time and need to be able to get back to work, so this came into part of the discussions.
2. Currently, most of my symptoms are on my right side (thus surgery on the left side of my brain).  While my left side is starting to see some symptoms (it is mostly gait related), the doctors feel that I will most benefit from the one side and hopefully have some crossover effect for anything on the left side of my body.

Nevertheless, both doctors said, if I need the other side to get electrodes placed, I'll be able to get it whether it is 6 months or 6 years from now.  

I had an MRI last week that took approximately an hour.  If you've ever had an MRI, you understand that it is best not to be claustrophobic (I'm not), able to stand still (I timed my meds for this) and basically relax and go with the flow.  I was very happy to have good music playing during most of the procedure (the tech forgot to restart the music after he injected me with the contrast material for the last 10 minutes).  My wife recently had an MRI and the tech automatically put in classical to "relax" her.  He obviously does not know my wife.  The tech at this facility asked me my musical taste and when Nirvana - Smells Like Teen Spirit came on as the first song, I knew I was in good hands.

Getting to the title of this post, it is weird to think that I'm basically sitting at work or at home with the family doing typical, everyday things and in about a week I'll be going in for brain surgery, by choice.  It's not something you ever think you'll do.  I always thought of surgery as something you do because you have to and while I feel this will greatly improve my quality of life, it is still a choice that I and my wife made by ourselves.  We had input from doctors, but the ultimate decision was my own.  I know even in heart surgery we make that decision (we've made that decision many times for many issues with my daughter); however, except for her surgeries to correct her cleft lip, it was never really a choice, it was have this procedure or she will die.  The lip surgery is so different because it is cosmetic, not the internal function of an organ, let alone the brain.  It's so unreal that I am doing this surgery, yet I can't wait.

A friend told me the other day that he can tell I'm ready for this, and I am.  My wife as well.  She basically told me she hates watching me suffer, which is correct on so many levels.  Watch videos of people with Parkinson's when their meds kick in or they turn on their DBS.  Without a doubt, there is typically a sigh when the symptoms are relieved.  That is because besides the obvious pain in the ass part of the tremors, dystonia, gait issues, etc. Parkinson's Disease is exhausting, even without the insomnia that most people with Parkinson's have.  When my meds go on in the morning about 45 minutes after I take them, it is one of the happiest points in my day.  It sounds sad, but the fact is, getting around with a severe tremor and gait issues is just exhausting.  There is such a relief that it is actually hard to describe.  The fact that I will have more on time with the DBS and will hopefully wake up in the morning on, without the need for the meds to kick in, is such a mind-numbingly awesome notion that I cannot wait for all the surgeries to be over and my programming session to start.

Speaking of programming, a little aside.  I have great friends.  Most of the guys I hang out with that are not from my Synagogue were hired on at my first company the same year I was hired in 1993.  We basically all came to San Diego together and made our lives here.  All but one is still at that company since I left in February, but we all got together for a barbeque the other day to catch up and let everyone know what's going on.  Like any good group of engineers, they were curious about the actual device that will be implanted.  I don't know a lot, but know it is programmable via a remote control device that you place next to your chest.  Needless to say, this got them going on whether they could hack the device, and start messing with my brain and setting up websites to "Control the guy with YOPD."  This is why I like my friends, they do not suffer from poor you, I'm so sorry.  If they did, I'd go nuts.  They want me to get better and use the full potential of this opportunity whatever it might be.  This is also how I know I made the right move to switch companies, because my boss asked whether I'd be able to hack the remote as well. 

Sprint TOS update and saving on my cell phone bill

I was finally able to cancel my phone without causing incurring the ETF that Sprint wanted to charge.  However,  they would not allow me to cancel my wife's phone for the same reason because she just got her phone last November (I got my phone in October 2011).  This means that I was able to transfer to my phone to ting.com and changed my wife's plan from a family plan to one of their new individual plans until it makes sense to cancel her's altogether.

I am ok with this for one reason.  Switching over to ting seems like a risk and switching my phone first, allows  me to test the service before we switch over both of ours.  The main issue is Sprint didn't charge for roaming data (since their network sucks, this is probably a necessity) and ting basically does not allow it.  However, after a week of using ting.com, I'm happy to say I haven't noticed much of an issue.  Roaming calls still go through and are free still, so that was my main concern.   My bill is tracked by the amount of usage I actually use so the less I use data, talk or text for a month, the lower my bill and I can also set alerts to tell me I'm approaching certain limits.  I'm figuring my usage will end up costing me about $31 - $42 per month + charges, which is much cheaper than we're paying for my wife's plan.

I'll keep you updated.

The Value of Customer Loyalty

Yesterday, I cancelled our service with DirecTV.  This is a letter I wrote to their CEO explaining why.  I doubt I'll get a response but you never know.

Mr. White,

I am writing to inform you that I have cancelled my service with DirecTV after being a loyal customer since March 2004.  The reason I am leaving is one of cost.  However, if it were not for the way DirecTV and many other cable and information/phone companies treat long-term loyal customers I probably would not even had considered leaving DirecTV.

I was paying approximately $105 per month to your company for service that included HDDvr on two TV's in my household, one of which was a 20" standard definition TV.  When I called your customer service line to cancel my service, all of a sudden discounts were available to me that would have reduced my bill by $35 per month.  However, I had researched the issue enough by then that I had found that purchasing Roku boxes for each of the TV's and adding one service would result in me saving approximately $95 per month.  

What was more disturbing is that if I were a new customer, I would have been offered the same service or more for a savings of $70 per month (see http://www.directv.com/DTVAPP/new_customer/base_packages.jsp for ultimate package which you are now offering to new customers for $34.99 per month).  If this had been offered to me when my last contract was up, there is no way I would even thought of leaving DirectTV.  Instead, I decided to pay an extremely questionable and excessive $340 early cancellation fee just to get out of my contract and will never be a DirectTV member again because of your exhorbitant fees.

I wonder if your executive team has ever done any research on the cost of gaining a new customer versus losing a long-term customer.  The fact that you've not had to pay for a single service technician to come to my house and/or done anything except collect my money for the past 8 years makes me doubt it.  The fact that your company and many like it choose to put new customers above long term loyal customers seems backwards.  When even insurance companies are realizing that long term loyal customers are better and are reducing fees/premiums for them every year, might make you think that your business strategies might benefit from some more analysis and insight.

Thank you

UPDATE:  Just talked to Sharon at DirecTV.  She researched and found that I received the new HDDVR because there was a technical difficulty with my old one and that was the reason I accepted the new HDDVR even though I was not even placing it on a TV with HD capabilities.  She said they will be refunding my $340.

Thanks to this post @snappyliving for giving me the information to call their office.

Sprint lawyers need to retake contract law

I was on the phone with Sprint for about an hour on Saturday.  I called to have my service terminated while they waved the Early Termination Fee (ETF) based upon a change in their Terms of Service (TOS) that I wrote about previously.

They actually had someone from the escalations department contact me.  I think she was a bit exasperated and sounded like she had been fielding these calls for most of the day.  Nevertheless,  I noted two interesting things during our conversation.

1. She did not even realize that this change was in the contract.  She nearly called me a liar for saying it was different because the only thing the Sprint Lawyers had evidently prepared them for was the WiMax issue.
2. She insisted it was not a change that was material or adverse because the Sprint attorney's had told her it was not.  Evidently, they have no bias.

She outright refused to waive the fee and actually said that I should hire an attorney if I wanted to.  Based upon comments I've been reading online, it seems Sprint is in lock down mode and does not care how many customers they piss off.

BTW, it's not as if my wife and I are fly-by-night customers as we've been with Sprint for about 8 years.  If they don't respond to me soon, my next move will be to contact the Better Business Bureau (BBB).

Sprint TOS change, Can my Contract be Voided?

I have Sprint cell phone service and have been waiting for my contract to be up in order to possibly change my service over to ting.com.  One interesting bit of legalese is that if Sprint materially changes their Terms of Service, you are allowed to get out of your contract without being charged an Early Termination Fee.

Well, they changed their TOS of July 1 and I noticed they added this bit:

Call time for a single call may be subject to a maximum duration and may be automatically terminated if the maximum duration is exceeded. Rates that vary based on the time of access will be determined based on the location of the network equipment providing service and not the location of your Device or your Device's area code (if applicable).

By adding this, they are allowing themselves to basically say a call that was an hour and spanned over a time period where rates are different (nights vs. days), can be split up over the two different time periods.  I would say, changing how my rates are possibly calculated is a material change and should be subject to allowing my to get out of my TOS.  What do you think?

DBS Approved!

I got word that I was approved by my insurance company and my DBS has been scheduled for early August.  I will update with information after I go through more of the process and have more information.

I'm figuring I won't show my surgeon this video until after everything is done and I'm cleared.

Prerequisites to DBS

Continuing my previous post, I'm going to describe the four people that needed to approve me for DBS surgery before the request for authorization was made to my insurance company.  These four doctors were my neurologist (actually she is a Movement Disorders Specialist), the neurosurgeon who would perform the surgery, a neuro-psychologist and a speech therapist.  Going in reverse order:

Neuro-Psychologist:
The other major side effect of DBS is cognitive issues.  This is what scares me the most about DBS.  Let's face it, I am the sole bread winner in my family.  My wife is a stay-at-home mom and we have two kids under the age of 10.  I am a full-time software engineer and need to be able to continuing working at my current level.  The psychologist put me through a series of memory, logic, spatial relationship, learning and comprehension testing.  It was basically an exhausting two and a half hours of almost non-stop questions and responses.  The psychologist was also incredibly patient and understanding when my meds began to wear off near the 2 hour mark as well as kind enough to explain the purpose of some of the tests (my wife is a therapist and some of her friends are psychologists, so they had some professional curiosity as to the tests and asked me to report back).  Some of the tests included asking me to form shapes of blocks to match a a picture, memorize a word list and repeat it back, identify pictures of everyday and not-so everyday objects, learn and indicate if an image was new or previously shown and do simple calculations in my head.

Speech Therapist:
One of the possible side effects of DBS is related to speech.  The speech center in the brain is located near where the probes are inserted so the doctors wanted me to see a speech therapist to both assess my current level of speech as well as set a baseline.  Also, since soft talking and slurring are symptoms of Parkinson's it was a good opportunity to measure my current state.  As I'm often asked to repeat myself because, this is also an issue with my diagnosis and symptom I have, although not a major issue at the moment.  During my assessment, the speech therapist set me through a series of tests to both measure my volume, range and ability to enunciate.  She had me, in a loud voice, make a constant mid-level sound, and make an increasingly higher and lower pitch sound as well.  She then had me read from a document so she could listen closely to my dictation.  The main issue I had was the not so surprising average decibel level while reading the document.  She said that I spoke about 7 dB lower than normal.  Since decibels are measured using a logarithmic scale, this actually means I spoke much softer than normal, about 1/4 the volume of what a typical speaker would have.  However, I actually had a range of about 2 octaves.    The testing went pretty quickly and she also mentioned therapies that are available to people with Parkinson's if interested and you're having issues with people constantly asking you to repeat yourself.

Neuro-Surgeon:

This was the first person I met with other than my neurologist. Besides describing the surgery, he wanted to basically size me up, for lack of a better term.  His purpose was to determine if in his opinion, it was even worth me going to see the two therapists described above based upon my current cognitive abilities.  Also, he wanted to judge how medications worked in me, as one's reaction to Levadopa is considered a good indicator that the surgery would be a success.  The better Levadopa assists your day-to-day functionality, the better your surgery should also assist in alleviating your symptoms.  The last thing the doctor wanted to ensure was that I understood the risks involved and what the possible negative outcomes could be.

Movement Disorder Specialist (MDS):
This is the neurologist I have been seeing for the past 9 years.  She diagnosed me and has been treating my symptoms for that entire time.  She also got me into the original Azilect study as well as the follow-up study to assess Azilect's effect as a neuro-protector.  That one study, probably saved me over $5000 in drug co-pays over the five years I was in the drug studies (July 2006-August 2011).  She has been recommending I look at DBS for a couple years now, as  my medication intake has increased both steadily and dramatically.  She has been saying for a while now, that she believes I am a good candidate and that I'll appreciate the effect it will have on my life.

My MDS called me late last week that her team had approved me and also thought I'd make a good candidate for DBS.  They are currently putting the paper work together to get insurance approval for the procedure.  Once that is done, they will schedule surgery.

Video of man switching off his DBS electrodes shows dramatic results

This video is amazing.  Just the speed of his body's reaction to turning it off and on shows how incredible and dramatically life-altering this surgery can be.  I am am even more psyched to be in the process of getting the surgery.

Kanye West should be Ridiculed and Mocked

There is a post going around twitter by someone with Parkinson's discussing the use of Parkinsnon's in Kanye West's new album Yeezus.  The post discusses the insensitivity of using Parkinson's in his lyrics and trying to educate him better.  The lyrics he used are:

The monster about to come alive again

Soon as I pull up and park the Benz 

We get this bitch shaking like Parkinson’s

While the writer of the post has good intentions of trying to get another celebrity on the side of Parkinson's patients and bring publicity to the fight against the disease, I can tell you it's not going to work.  The reason is not the message in his post, but to whom he is sending the message.

Kanye West is out for Kanye West.  This is why he won't care one iota about how his lyrics affect others, only if it affects his bottom line.  Off the top of my head:

1. This is a man who married Kim Kardashian and is basically having public spats with her about their soon to be new born child.  He doesn't care whether publicity is good or bad, just that it is there.
2. He called his album Yeezus.  Even as a Jew, I can't help but think this is a take on calling himself Jesus, for no other reason then one of the other tracks on the album is literally, "I am a God"

Beside this, Kanye doesn't care about the truth and is an idiot.  The lyrics to the track "Black Skinhead" on the same album are: 

I keep it 300, like the Romans, 300 bitches, where's the Trojans?  

This is actually a reference to the Spartans defeat of the Persians in The Battle of Thermopylae made famous more recently by the movie 300.  The more amusing part is this is not some throwaway line, it's the freaking chorus.  If Kanye West doesn't care about facts in the freaking chorus of his song he sung on Saturday Night Live, why would he care about offending someone, anyone with Parkinson's.  Besides, he probably thinks those with Parkinson's are mostly old, white people.

Starting the DBS process

My doctor (Neurologist/Motion Disorder Specialist) and I have agreed that I am approaching a time where I need to consider DBS.  We'd been discussing it for about a year, but it seems like the right thing to do.  My big issue is that I just started a new job, so don't have a lot of vacation time, so I'm going to try and delay it until the fall, but we haven't even reached that point yet.

The reason I am now looking at DBS is basically two fold:

1. I am taking a huge amount of medication to be able to both work and function (luckily I've had minimal side effects).  However, both my doctor and I are starting to notice some dyskinesia.  I take so much medicine that one of my prescriptions was held up by the pharmacy because I was taking in too often AND in too high a dosage, per my insurance's formulary.  I take three drugs now Azilect, Requip XL and Sinemet (Carbodopa-Levodopa), in quantities that would probably make a person without PD go nuts.
2. My mornings and late evenings SUCK!  It basically takes about 45 minutes for my meds to kick in.  Until that time, I'm a feet shuffling, stumbling, 200 pound locomotive trying to avoid running into the dog, my kids and my wife when I can move and trying to start moving when I'm frozen in a doorway or just getting up from my bed or couch.

Over the next few posts, I'll discuss the process I've been going through and the doctors and therapists I've been meeting with to discuss whether I am a good candidate for the surgery.

Getting some traffic

Evidently, telling the Michael J Fox Foundation that you have a blog is good for traffic and I've barely written anything in the past few months due to my new job keeping me busy.  So, if you'd like to see some of my more interesting posts....

• A job interview while having Parkinsons's Disease
• The women in my life
• Discussing my daughter's broken neck in: A Personal Rant and Learning to be Grateful
• My notes from a YOPD Conference in Orange County

Those aren't my only interesting posts, but they say a great deal about me and what my family and I are dealing with.  Please look around and let me know what interests you and what you'd like to hear more about.

Juice Fasting with Parkinson's Disease

Ok, that was hard and weird.  I did not make it the full three days. I did two days, and ate a couple of Avocados and Bananas during the fast as well, so not sure how much of a "fast" it actually was.  I'm a big guy (about 210 lbs) so, I get hungry.  Also, as my wife noted, I'm a snacker, so it took a lot to just get through those two days.

Nevertheless, I'm happy I did it because of what I noticed.  During the fast, especially the second day and the third day during which I actually did eat a bit, I noticed my meds were working really well and I seemed to be staying on longer.  In fact, yesterday (day 3), I extended my meds (Sinemet) so long, that I actually took only 8 pills instead of 9 during the day, and the last two were taken at least two hours after I would normally take my last dosage of the day.

So, the question is, what was this doing to my system that I could extend my meds for much longer periods of time.  A couple things come to mind.

1. Sinemet does not work well with protein, and the juice fast pretty much eliminates most proteins from your diet, at least proteins from animal sources.  The fact I was eating a lot less protein may have contributed to the effectiveness of my meds.  One caveat is that my wife is vegetarian, and we rarely eat meat in the house,. so unless it's dairy or soy, I don't get a lot of protein on a daily basis anyways.
2. Ridding my body of toxic food helped me reset some of my synapses and effectively improved my reactions to my medications.  This one is a who knows?
3. Similar to number 2, but coming from the opposite end, eating a lot of fruits and vegetables in the form of juice helps your body absorb and use the medications more effectively.  I mean the amount of fruits and vegetables I ate in those two days was huge, compared any other day, hell week, over the past couple of years.

While, I have no evidence other then basically how I felt and what my reactions were, it gives me somewhere /something to look into further.  I plan no trying to just skip a few meals a week next week during working hours and drink juices instead.  I want to see if that will have a similar effect on my med schedule and general overall well being.  Other than being hungry and missing the act of eating, I'd say it was pretty successful and I look forward to some more self-experimentation.

One note:  I am not a doctor, I am not recommending this to anyone.  If you do begin a fast, note that you probably should see your doctor before hand.  Nevertheless, if you do try it, please let me know how it went and what if any observations you make.

Day 1 of 3 day Juice Fast

I am finally going to do a juice fast for three days.  I'm doing three days because I figure it's long enough to show some results without going crazy.  I'll report on how I'm doing and what I'm feeling.  I will probably not be giving up caffeine these next few days, so I'll be drinking a few cups of coffee as well.

This morning's juice:

• 1  Bunch of Kale
• 1 Large Cucumber
• 1 Head of Romaine Lettuce
• 1 Green Apple
• 1 Anjou Pear
• 2 Red Apples

Hopefully, this will get me through a lot of the day, as I'm at work and don't have the ability to juice much more.  I'll go down to the cart and grab a Naked Juice or something similar if I run out and need some more nourishment by the end of the day.

Wish me luck.

Bought a Juicer

I bought a juicer to try to increase my vegetable intake and try to improve my diet.  I've experimented a bit, but I have to say, so far this is my favorite juice.

• 8 carrots (ends removed) 
• 2 Granny Smith Apples
• 2 Red Apples 

I juiced them in that order, poured it into a glass and added some ice.  DELICIOUS!  The basics of the recipe came from here.  I need to find some good green vegetable juices.  If you have any, please point me to them in the comments.

An interview with Parkinson's Disease

No, this is not a post of me interviewing my disease.  This is about going on an interview for a new job while I have Parkinson's Disease.  I work at a large corporation and have been here for nearly 20 years.  That's a long time for anyone, but especially for someone in the tech industry.  However, I have stayed here for a number of reasons, including health care, schedule flexibility and the fact that my management chain believes people's families are important and have shown that in their actions towards me and my family, especially since my daughter was born.

I like working where I am but have felt stuck in a rut that I have not been able to get out.  It's not that I lack motivation (actually a symptom of PD I don't yet have), but I seem to have been (in my opinion) typecast in a role here at my company and am unable to get to more leading roles, because of that typecasting.  Therefore, this past December, I updated the resume and sent it out to a few companies in my area that had posted positions dealing with areas that I had experience and in which I was interested.  These positions were all senior engineering positions.

Within two weeks, one of those companies contacted me and after an initial interview over the phone, asked me to attend an onsite interview.  This is where the nerves could kick in.  I did not want to hide my Parkinson's; but, I also did not want to advertise it in the way a constant tremor or being off balance may cause.  Luckily, I have recently figured out a good med regimen that keeps my tremor and gait issues pretty much controlled as long as I get a good night's sleep and eat right (lower protein intake and reduce the junk food).

So, after making sure I got a good night's sleep and not overdoing anything for breakfast, I took my meds at the appropriate times and showed up for my interview on time (giving thanks for leaving an extra 20 minutes early because of all the traffic I hit).  The interviews went well, they seemed to like my resume and experience.  Also, I had barely a tremor and really had no gait issues for the 3 hours I was there.  I was relaxed and felt good.

The last interview was with the person that would be my manager if I got the position.  It was near the end of this interview that I told him that I wished to disclose that I had Parkinson's Disease.  The reason I did this was twofold.

1. If I got the job, I was going to be working with these people.  I wanted to be up front and honest because they would be the ones I would be interacting with everyday.  If I didn't disclose, when I got to work and started using a cane or shaking really badly, they'd be wondering what else was I hiding.
2. To be honest, if they had a problem with my PD, I wouldn't want to work there.  I worked for a company that has been very accommodating  I don't need the added stress of hiding my disease from my new employer added to the stress of learning a new job.

The manager looked at me, thanked me for being honest and asked point blank what did that mean in terms of my work.  I explained that my work wouldn't suffer (it hasn't at my current job), I just might type a little slower and use a cane at times.  He told me as long as my work was not affected, he didn't care (which is the answer I was hoping he'd give).  We ended the interview about 10 minutes later, and I was escorted to the lobby.  

A week and a half later, I was offered a position and will be starting a new job for the first time in two weeks.  I am excited, nervous and very happy with all that has happened.  But, I'm especially glad/hopeful that I found a company that will allow me to continue working with PD and support my family.