Tuesday, September 13, 2016

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.

Wednesday, May 6, 2015

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.

Wednesday, April 8, 2015

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.

Wednesday, November 12, 2014

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.

Monday, October 6, 2014

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.

Monday, August 11, 2014

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.

Thursday, August 7, 2014

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.