My Zelapar Follow Up

To my few but loyal followers, I apologize for the brief hiatus that I have taken in keeping my blog up to date. I am publicly making my declaration that I will try to commit more time to keeping this space current and relatively entertaining. I ask only this, of you the reader, if you think this, my blog, to be of worth, that you pass it on to a friend, a collegue, or even just someone that you feel a need to get back at–well, okay that might be a little cruel and unusual punishment. 

I realize that I never got back to you, my friends, what the final outcome was from my nightmare account with Zelapar, a drug that I only took for 3 days but stayed in my bloodstrem for over 21 days. If you missed my saga with this drug, just check out my earlier postings to learn how this drug dragged me through the proverbial ringer.

At this time, I think that I can honestly conclude that I have no residual side effects or known damage from my stint with Zelapar. Yes, it caused weeks of frustration, weeks of aggravation,  and much more dyskinesia than I am normally accustomed to, but in the end, I came out alright. As best as I can tell, I seem no worse for wear.

I can’t say it enough: Every PD patient is different and every med is going to help, do nothing, or challenge him or her.  If I can offer any advice, from personal experience and not from a medical perspective, the patient can best serve themself if he or she monitors his or her condition closely as to best be aware of any encroaching side effects or changes in condition. What works for some may not work for all–it’s just that simple with this disease–at least from where I sit.

No thanks to the makers of Zelapar or the FDA, both with whom I filed concrns with, only to be lost in the vapor. No follow-up call, email, or contact of any kind. I would think that there would interest by someone in one of these large institutions that actually give a damn–but no! Then today, this piece of news slippped below my radar:

Aug 20 (Reuters) – The U.S. Food and Drug Administration said on Friday it will examine the potential heart risks of Novartis AG’s (NOVN.VX) Parkinson’s drug Stalevo, a combination of two treatments for the debilitating brain disease.

I am not on Stalevo but I have many friends who are taking this drug. I encourage you to keep up with the constant flurry of PD data, breakthroughs,and warnings through the power of Google and the web, whether you are on Stalevo or not. If you are on Stalevo, I would suggest that you closely monitor the outcome and keep in touch with your Neurologist about where this goes.  Remember, that’s just my humble opinion and not medical advice.

Let me know what you think and please subscribe to my blog. Thanks!

About Karl Robb

Karl Robb has had Parkinson’s disease (PD) for over thirty years. With symptoms since he was seventeen years old, Karl was diagnosed at the age of twenty-three. Now fifty-one, he is a Parkinson’s disease advocate, an entrepreneur, an inventor, an author of two books (A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease and Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit) with his wife and care partner, Angela Robb. He has blogged for ten years on his website, ASoftVoice.com. He is a Community Team Member to ParkinsonsDisease.net and is a contributor to PatientsLikeMe.com. His blog, ASoftVoice.com, has been recognized four years in a row by Healthline.com as one of The Best Parkinson’s Blogs of 2018, 2017, 2016, and 2015! Healthline.com also listed the book A Soft Voice in a Noisy World in their list of Best Parkinson’s Disease Books of 2017! FeedSpot.com has recognized ASoftVoice.com for 2018 and 2017 as a Top 50 Parkinson’s Disease blog. Karl was a blogger for the 2016 World Parkinson Congress in Portland, Oregon. He is a frequent speaker on Parkinson’s disease issues as well as an experienced advocate for Parkinson’s issues throughout the United States. He is also an advisor and consultant on Parkinson’s disease. Karl is a board member of both the Parkinson Voice Project and Parkinson Social Network based in Virginia. He was an active board member (6 years) and an advocate (18 years) with the Parkinson’s Action Network (PAN). In his free time, he is a photographer, constant writer, longtime magician, and a practicing Reiki Jin Kei Do master. Karl received a Bachelor of Arts degree in English from the University of North Carolina at Chapel Hill. He has been featured by The New York Post, BBC Radio, CBS News, National Public Broadcasting (NPR), in The New Republic magazine and NHK World Television, as well as several Washington, D.C., television stations. You may reach Karl via email at asoftvoice@gmail.com, on Facebook, or contact him via Twitter @asoftvoicepd. I’m available for speaking engagements to share my experience living with Parkinson’s disease. Please contact me at asoftvoice@gmail.com if you are interested in having me speak to your group, conference/symposium, or would like me to write an article for your newsletter or blog. 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.

Posted on September 27, 2010, in Education & Support, Health, Media & Trends, Medications, Parkinson's Disease, Philosophy, support groups, Uncategorized and tagged , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink. Leave a comment.

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