First Person – Else Manz
At 58, I was proud of my healthy diet, active lifestyle and my near-empty medicine chest which held only calcium and vitamin D. Life was good. However, I had also spent a full year quietly reviewing many sources, including my nursing texts, to determine the probable cause of the resting tremor in my right hand.
On March 31, 1998 I had my consultation with the local neurologist. It didn’t take him long to confirm my suspicions. He asked permission to call a Saskatoon neurologist who was looking for people who were newly diagnosed with Parkinson’s and not taking medication to participate in a clinical drug trial.
The Saskatoon neurologist sent me an informed consent document to review. It described an investigational drug that had already been tried on a small group of patients. Now my questions took centre stage: If I do not participate in the study, what are my options for treatment? Does the trial drug resemble the makeup or action of one already available? Would the drug delay the progression of Parkinson’s? Does excretion through the liver and kidney mean the possibility of a negative effect on those organs?
I was impressed by the gentleness, thoughtfulness and patience with which my questions and those of my husband were answered. What did I have to lose? I could experience side-effects but there was also the possibility this could be a win-win opportunity.
May 6, 1998 marked my first visit as a participant in the study. I understood that I would be randomly assigned to one of three groups during the initial six months of the study: participants receiving 1 mg of the active drug; participants receiving 2 mg of the active drug; or participants on placebo.
After 28 days, I would return for a check of vital signs, have blood and urine samples taken and undergo neurological testing. Five more visits were scheduled during the first six months of the study. I thought the monitoring process couldn’t be better.
Since my husband and I were both working full time, we decided to treat these 500 km round trips, from Regina to Saskatoon, as family holidays. We would take a different route home from each appointment and have dinner, shopping trips or visits along the way.
Following the initial study, I was asked and agreed to participate in additional studies and sub-studies. The most difficult requirement of one study was having to avoid eating any foods containing tyramine. This meant having to give up some of my favourites such as pizza and lasagna.
In 2003, I learned that I had been taking the active drug. I later received copies of the research published in the scientific journal. Articles concluded that the positives certainly seemed to outweigh the negatives.
When Health Canada approved the drug, I felt fortunate that I had the privilege of access to the medication for the previous eight years. The study came to a close in 2006 but I remain on the medication to this day.
First Person – Penny McDowell
It was the shaking hand that caught my doctor’s attention. I was in his office for my regular checkup but he was saying, “I guess I’d better send you to a neurologist because it looks like you could have Parkinson’s.” I was totally shocked on that last day of February, 2005.
By the time I got a formal diagnosis, in April 2006, I was experiencing a few more symptoms such as muscle stiffness and sciatica-like pain. I had also lost my sense of smell and wasn’t as confident on my feet; my balance was a bit shaky at times. I was feeling a lot of anxiety, too.
My neurologist told me there was a research study looking for candidates in the early stages of Parkinson’s and asked if I would be willing to participate. He thought I might be a good candidate because my symptoms were not that severe.
I read the information the clinic gave me and did my own research online. I learned that the investigational drug had been tested in other countries and had shown some promising results. I decided to be proactive and join the trial. I thought this would be a good opportunity to help myself with one of the latest Parkinson’s therapies while contributing to Parkinson’s research.
One of the greatest benefits of being in the trial was the amount of time the doctors and nurses spent with me during the follow-up visits which lasted up to two hours. It was a tremendous learning experience spending that much time with people who were knowledgeable about Parkinson’s. You feel supported and more confident when you know what’s happening and that you’re being treated. I felt better being in the trial and having that kind of care. The resources were also phenomenal. There were neurologists, nurses, a social worker, occupational therapist and physiotherapist. Everything for movement disorders was under one roof.
The original clinical trial has ended but I am in a follow-up study. My neurologist feels that I’m doing well. I still have a tremor in my left hand and leg but haven’t experienced any major incapacitation after four years on the drug. I’m on no other medications for Parkinson’s and I’m still functioning well day to day, if a bit slower. I try to maintain a healthy lifestyle and pace myself.
For more information on clinical trials, including benefits and risks, questions to ask and a description of the phases of clinical trials, visit the Parkinson Society Canada web page, Clinical Trials and Research Studies.