Monday, June 24, 2013

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:

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.

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.

Wednesday, June 19, 2013

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.

Thursday, June 13, 2013

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.