Stories

Rory

Fighting An Unseen Enemy

Diagnosed at 45

Like many you, my fight with PD began long before I realized that I was in one. My formal ordeal with PD began back in 2003. However, after looking back, I can trace symptoms of having PD five to eight years prior to being formally diagnosed. The first clue that I experienced began in 1993 with an infrequent involuntary blinking in my left eyelid. I spoke to my physician about it and he attributed it to stress and nothing to be concerned about. In 1998, people whom I worked with began to notice that I appeared to be angry while working. I now know that this was another symptom of PD, a loss of facial expression. In early 2003, I began to experience bouts of high anxiety. Little did I know, the anxiety that I began to experience, was but a precursor of things to come. In mid 2003, I began losing movement in my left arm. Later, my left leg became heavy and labored while walking. It was at that time that I realized that something was seriously wrong with me.

I immediately sought out the medical advice from my general practitioner who prescribed me an anti-anxiety drug and advised me to see a neurologist. At the age of 45, and after being examined by a board-certified neurologist, I was told I exhibited all of the symptoms of having Parkinson's disease. I was totally shocked and in disbelief. Me? Parkinson's disease?impossible I thought. I was too young and healthy for that. Besides, I had taken excellent care of myself for most of my life. I ran on the treadmill regularly, lifted weights religiously; I did not drink, smoke, or do drugs, so I had a hard time accepting the initial diagnosis. Needless to say, I sought out a second opinion from a specialist in neurology at Duke University(same diagnosis). Knowing the PD was a neuro-degerative disease, I knew that I had to take immediate action and find a treatment or intervention believed to delay the progression of the disease. Thus, I began looking for an open clinical trial focusing on the possibility of slowing the progression of PD. Luckily, I found one in Philadelphia, and was accepted into a study that I believe to have significant promise. Below is a description of the study.

GM1 ganglioside in Parkinson's disease: Results of a five-year open study.
Schneider JS, Sendek S, Daskalakis C, Cambi F.
Department of Pathology, Anatomy and Cell Biology, Thomas Jefferson University, Philadelphia, PA 19107, USA. jay.schneider@jefferson.edu
Abstract:
Previous work demonstrated that short-term (i.e., 16 weeks) use of GM1 ganglioside resulted in significant symptom reduction in Parkinson's disease (PD) patients. As GM1 use may have long-term benefit for PD patients, the present study was conducted to evaluate the long-term safety and efficacy of GM1 in PD patients. Twenty-six patients who concluded a previous randomized double blind placebo controlled trial of GM1 volunteered for this open-extension study. At the end of 5 years of GM1 use, patients generally had lower Unified Parkinson's Disease Rating Scale (UPDRS) motor scores (assessed during a practically defined "off" period) than at baseline prior to randomization into the original study. A similar result was found for UPDRS Activities of Daily Living scores. Performance of timed motor tests also remained mostly stable over the 5-year observation period. No consistent clinically significant changes in blood chemistry, hematologic indices or urine chemistry were noted over the course of this study. These results suggest that long-term GM1 use by PD patients is safe and may provide some clinical benefit for PD patients. Additional study is required to more completely assess the degree to which GM1 treatment may be a symptomatic and/or disease-modifying agent for treatment of PD.
PMID: 20206941 [PubMed - indexed for MEDLINE]


My participation in the study ended a couple of years ago with positive results. Since the study, I have experienced a significant reduction of PD symptoms i.e. (reduced arm swing, slow movement, poor dexterity, and poor concentration). During the past few years, I have worked with the excellent neurologist at Emory University to find the best combination of anti-PD medications to reduce my symptoms. So far, so good.

Being a man of faith, I cannot and do not attribute my improvement solely to the medications or study itself. However, I cannot ignore the professionalism, hard work, scientific methods, and disciplined approach that I was subjected to while working with the neurologist at Emory University and participating in the Thomas Jefferson study. In essence, I am not claiming GM1 to be a cure for PD. However, I do believe that continued study of GM1 is sound science and warrants further investigation. Finally, I encourage any person afflicted with PD to seek out and if possible participate in a clinical trial in an attempt to expedite a possible cure.

Treating the symptoms of PD is good but finding a cure would be far better.

1 Comment

I TOO HAVE P.D.FOR 10 YEAR NOW 84 AND MY HUSBAND HAS HAD IT 5 YEARS AT 86 NOW. SO WE BOTH CARE TAKERS AND PAIENTS.
HUSBAND BILL DOES ALL THE COOKING AND DO THE CLEAN UP, SHOP AND GET THINGS DONE. MY HUSBAND DID BOX FOR AWHILE AND ALSO HAD A HORSE ACCIENT PINED UNDER A QUARTER HORSE, HE EXCERSIE IN THE POOL AT LEAST 5 DAYS A WEEK. I DRIVE ,CLEAN, AND STARTED A SUPPORT GROUP OF 40 WITH ABOUT 20 SHOWING UP IN GLEN CARBON, ILL. ONCE A MONTH ON A WEDS.
I'M GIVEING BACK. HAVE 20 NEW FRIENDS WHO NEED SUPPORT AND LOVE IT.

Marilynn J kozyak, Jun 7, 2013

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