I wanted to help other Parkinson’s patients and thought that being in the study may lead to something that would improve their care
Paul L
Late last fall, I signed up to be part of the TOPAZ (Trial of Parkinson’s and Zoledronic Acid) trial for people with Parkinson’s Disease. TOPAZ is sponsored in by the National Institute of Aging and the Parkinson’s Foundation and led by Drs. Carlie Tanner from University of California in San Francisco and Steve Cummings from Sutter Health. They have put together a team of experts from many different institutions to see if Zoledronic Acid (Zoledronate), a drug already being used safely for osteoporosis since it received FDA approval in 2002, would be effective in reducing fractures from falls in people with PD.
To be considered for the trial, you must be over 60, have Parkinson’s Disease or Parkinsonism and have not had a hip fracture.
Everyone will be assigned randomly to a treatment group or a placebo group. Some patients will meet with a Neurologist online. All will have a nurse come to their home to give them their infusion, either Zoledronate or a placebo, depending on which group they have been assigned to.
The nurse came to my home in January and I had my infusion. I have no way of knowing which group I was placed in. I had no side effects from the infusion, although mild flu-like symptoms occur in about 10 % of those who receive Zoledronate.
6 weeks later, I had an unfortunate incident with a Chicago sidewalk and landed squarely on my left shoulder. I knew immediately that something was wrong. A visit to Urgent Care confirmed that I had a proximal fracture in my upper left humerus (my shoulder). I went home with my arm in a sling and a lot of pain.
About a month after my injury, I was asked by Lisa, a Parkinson’s friend who was stepping down from the steering committee for TOPAZ, to take her place. My reaction was “but I failed the trial!.” She encouraged me to join anyway.
At my first meeting, Lisa introduced me to the group. I then told them that I had apparently failed the trial – did they really want me on the steering committee?
They started asking me all sorts of questions about my accident. An important piece of the study is following up on everyone taking part in the trial for 3 years. We need to keep a “fall diary”, recording how many times a day we fell and any injuries. I have had only one fall since my infusion, and that fall resulted in a fracture. What they hope to find is that at some point, the results from the two groups will diverge. Those who received Zoledronate may have the same number of falls as the placebo group but should have significantly fewer fractures. I asked if I could find out if I had the placebo since I fractured my shoulder. I was told that I cannot assume that I received the placebo and I will have to wait 3 years to find out.
My next question was “how long does it take for the bones to become stronger from the zolendronate, since my fall was only 6 weeks after my infusion.” They said that is the big question – if and when do the number of fractures in the two groups diverge? It may be 4 weeks or 4 months. They do not know the answer yet. The hope is that at some point, the group receiving Zoledronate will start having fewer fractures due to falls than the placebo group.
My experience is all too familiar for People with Parkinson’s. (PwP’s). We are more than 4 times likely to have a hip fracture from a fall than the general population. Think about it: 4 times more likely. Hip fractures can lead to a loss of quality of life and physical function, and even death.
If Zoledronate can prevent these fractures, we can look forward to a better quality of life as we age with Parkinson’s.
More volunteers are needed for this trial. You can find out more about the trial and sign up for it at https://www.topazstudy.org/. The Invitation Code is Twitchy. This is for tracking purposes only. You will receive a $100 gift card when you have your infusion and $50 per year for follow up every 4 months on the computer. Right now, the TOPAZ study is only available for people living in the US.
I hope you will join me.
WooHoo!!!! So proud to be a part of this illustrious group!
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