Monthly Archives: April 2010

A Danger In Profiling

Is Profiling Really Right?

I am worried! I’ll tell you why. The Transportation Security Agency (TSA), the people looking out for us at the airports and train stations are going to be profiling passengers. They are on the lookout for people that stand out in the crowd—people that move differently and may appear to be nervous, stutter, or seem to have something to hide.

Parkinson’s patients may fidget, tremor, or shake to and fro, at any time for any unknown reason. Stuttering, stammering, or broken speech can be part of the illness—does TSA know this? Who is training TSA about the thousands if not millions of people who travel with neurological disorders? If isn’t Parkinson’s, it could be one of the many other illnesses that calls attention to the patient. Stress and anxiety strike even the healthiest of the population at certain times of his or her lives—how does a TSA agent, someone unfamiliar and void of neurological conditions make the judgment to dismiss one person acting strangely over another to a traveler acting strangely due to a medical condition?

About 4 years ago, my wife and I were traveling to go to Florida. On this one occasion, I would take a walking stick that hikers use and can be adjusted to work as a monopod for stabilizing a camera. I decided it wouldn’t be a problem since the stick was retractable and very portable.

Security went smoothly, until I passed through the metal detector. I was fine, but the young woman scanning my carry-on and now, the stick, eyed it like she had never seen a walking stick before. Her perplexed expression confused my wife and me but we hoped that wasn’t going to last—it did. She called over a tall, pushy, young, man in his late 20’s to ask me what this was and to tell me how he was going to proceed to dismantle it in front of me. I immediately snapped back,

“If you break it, you buy it! It’s a simple spring-loaded walking stick! I have Parkinson’s disease and on occasion I find it helpful! Last week, the tension spring on the stick got stuck and it took me an hour to get it right and if you disassemble it, this thing will never work right!”

 To my amazement, the kid eyed me, eyed the stick, and handed it back to me. My outburst had paid off and we were free to be on our way.

Here is an example of our culture making life more difficult rather than easier. I understand the need for security on our planes, trains, ships, and highways, but I also think that those inspecting the cargo and passengers should have knowledge about what and who they are inspecting—don’t you?

Know The Risks

I’m concerned when I hear of drug companies and medical procedures that claim that their drug or procedure works but they can’t explain why. I often second-guess my doctors and rightly so. I have seen it pay off for me. I don’t suggest it for everyone, but with over 20 years of being in the Parkinson’s Disease arena, I know enough to be dangerous.  Let’s add a little more salt to the pot. Why not try this or add that? Have you considered this? Options can benefit you or have consequences.

I am not a chemistry experiment for the medical community to tweak and tinker with like some weekend mechanic’s car restoration project. Physicians have a responsibility to understand the consequences of the drugs that they are prescribing but when the drug maker doesn’t truly understand the drug how can the doctor account for your reaction? I had a good thing going and I was pretty stable with my meds. For the past few weeks, dyskinesias (uncontrollable movements due to too much dopamine)(at least that is the best guess for causes dyskinesia) have been getting longer and more severe, after trying this new medicine.

 For the last 8 years with the assistance of my neurologist, I have remained stable. I have been fortunate that I have been able to pretty much keep my progression in check. My medications were working and mostly doing the job. I was noticing that my meds were wearing off slightly and that my on-time wasn’t lasting as long as I would like. It’s no surprise that your drugs aren’t always going to work at maximum benefit and time for a change may come. My doctor suggested that I try Zelapar, a drug I wish I had understood better before I tried it.

 March 29th began with the first dosage of Zelapar(selegiline hydrochloride) an Orally Disintegrating Tablet. The pill is a disgusting bitter tasting quasi-grapefruit flavored pill laced with a derivative of a chemical artificial sweetener and gelatin. The shiny happy yellow pill reminds me of a jaundiced VW bug. Anyone who knows me knows that I am Vegetarian and that I avoid chemicals as much as possible. I admit to eating junk on occasion but overall, I would think a drug maker would avoid a mind-altering-fake-sweetener and gelatin.

 Had I known what I know now, I never would have touched this stuff. The 29th was a Monday. I read the pill instructions and as ordered I let the putrid tasting disintegrating pill dissolve on my tongue 5 minutes or more before consuming water or food. The pill is meant to be a convenient once-a-day agonist. It’s so convenient that according to the drug paperwork it may stay in your system 5-7 days (or longer from personal experience) even after the drug is discontinued.

 The Zelapar (1.25 mg, introductory dose) worked almost instantly. A strange inexplicable sensation of some brain activation was triggered. I’ll admit, the first day wasn’t too bad as I saw a drug longevity that I haven’t seen for years. In spite of some mild dyskinesias (uncontrollable movement that I had finally gotten mostly under control), my meds worked, I was able to eat protein without ruining Sinemet absorption and stay physically active. My motion appeared fluid and my energy seemed surprisingly out of the ordinary. I overlooked the negative side-effects and was hopeful that my system was going to get used to this new drug.

Day 2 of Zelapar showed signs of more uncontrollable moving and for longer time periods. Uncontrollable movement that were lasting for 15-20 minute periods from day 1  of Zelapar was now lasting for 30-45 minutes once or twice during the day. Now, I was skeptical yet still hopeful that I could pull through this mysterious dilemma.

 When Wednesday, March 31st came (Day 3), I was really hoping that I wasn’t going to regret making the change. If you dare to read the fine print that comes in the box, there is reason for concern, in my humble opinion: This is from the makers of Zelapar: The decision to prescribe ZELAPAR should take into consideration that the MAO system of enzymes is complex and incompletely understood and there is only a limited amount of carefully documented clinical experience with ZELAPAR. Consequently, the full spectrum of possible responses to ZELAPAR may not have been observed in pre-marketing evaluation of the drug. It is advisable, therefore, to observe patients closely for atypical responses. 

 What the hell? Are they kidding me?  I love this phrase! Oh, it’s complex so we can’t really tell you what is really happening because we don’t understand because we don’t have enough data to tell you what to expect—Have A Nice Day. I added the Have A Nice Day—they didn’t actually infer it, but that’s the real English in a nutshell! As much as these drug companies claim to know they really don’t know. What does this mean? What it means to me is that I have to not forget to stay vigilant, cautious, and always remain my own best advocate. Some drugs may help while others will hinder and some are just a complete risk. Stay tuned for an update as the saga continues.

Keep in mind that what works for some of us may not work for others. This is all my personal experience and I am not a doctor.

April Is Parkinson’s Awareness Month!

Parkinson’s Disease Puts Your Life In Perspective

Red Tulip for PD Awareness monthThis month is Parkinson’s Awareness Month!

I will not tell you that having Parkinson’s Disease (PD) is a walk in the park. This disease can dictate your life and clutter your schedule every which way. I have seen it take its’ toll on many a marriage and family. I have also seen PD bring people together and strengthen family bonds.

How you and your friends and family deal with your diagnosis of PD will play a large part in how you deal with this illness. Some friends are going to be your rock and will be there when you need them the most. Sadly, you may see some friends crumble and possibly distance themselves from you. This is the unfortunate reality that some friends can’t go beyond a certain limit of friendship. I think some close friends don’t want to watch you go downhill, an unfortunate but realistic problem. It is my belief that sometimes friends are more unable to cope with PD than the patient. Some people just cannot accept bad news.

Your true friends and family will shine. You’ll have no trouble identifying who is going to stand by you and who will jump ship. You may get a few surprises along the way.  It is my belief that my true friends accept me whether I am healthy or ill, and if they don’t accept me for the state that I am in, then that’s the way it is.

Receiving a diagnosis of Parkinson’s Disease will make you stop and consider your future. It’s a sobering reality to get a grip on. Now is a good time to evaluate what it is you want to accomplish within the next 20 to 50 years of your life. The questions are important and probably obvious, but here are just a few:

  • How am I going to continue to work?
  • Do I tell my employer?
  • What do I do now?
  • How do I tell my spouse, child, relative, friend?
  • What do I do next?
  • Do I begin medicines or wait?
  • Do I need a Neurologist even if I have a fine primary physician?
  • If Parkinson’s is chronic and progressive is there anything that I can I do?

These are just some of the many questions that arise when someone is newly diagnosed, especially for the early onset Parkinson’s patient. I was diagnosed at 23 but saw symptoms as early as age 17. Now at 43 years old, I can’t control the disease but I can accommodate for it and plan around it.

At some point, if your PD progresses, there may come a time when an activity or function that you really enjoy is no longer possible. As disappointing as this may sound, keep in mind that you may just have to make adjustments and substitutions. Keeping active in both mind and body can go a long way to slowing the progression of Parkinson’s Disease. I believe that it is possible that if you take control of your health, early, you can keep PD in check.

It is important to know that there are resources and loads of valuable organizations that can help you answer your questions. There is an amazing network of Parkinson’s patients across the United States and the world. Many of us have been where you’ve been. While PD can be and often is a very individualized illness, sometimes sharing stories and information proves that many of us share a common situation. It is vital to understand that you are not alone with this illness.

I believe a support group is meant for empowering the attendees with information, options, and an to provide an understanding that the Parkinson’s community is just that, a community.  As a unified unit our community can rally for better drugs, new therapies, better dissemination of information, and with hope, a way to stop, and end Parkinson’s Disease completely.

Below is a brief list of some helpful resources to get you involved:

I am not a medical professional and this information is my personal view. I am just sharing my medical journey with you, the reader. I encourage you to seek all avenues that can benefit your condition.

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