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.

Wednesday, July 30, 2014

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.

Friday, July 18, 2014

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.

Thursday, May 1, 2014

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. 



Tuesday, March 18, 2014

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.

Tuesday, February 4, 2014

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.