Topaz: Trial to Test a Drug to Prevent Hip Fractures in Parkinsonism

People with parkinsonism have a much higher risk of hip and other fractures.  Our friends at UCSF’s Movement Disorders Center and other US clinics are recruiting for the TOPAZ (Trial oParkinson’s and Zoledronic Acid) study. 

Researchers will test if zoledronate, an FDA-approved medication for osteoporosis (thinning of the bone), can prevent fractures in people with parkinsonism, whether or not they have osteoporosis. Using zoledronate for this purpose is investigational.

Enroll today!  Participate in the TOPAZ study remotely, from the comfort of your home.  You could receive $100 upon enrollment and $50 per year during the study.

To be eligible, individuals must be at least 60 years of age with NO prior hip fracture, AND have been diagnosed with any of the following conditions:

  • Parkinson’s disease
  • Dementia with Lewy bodies
  • Multiple system atrophy
  • Progressive supranuclear palsy
  • Cortical basal degeneration
  • Vascular parkinsonism
  • or another form of neurodegenerative parkinsonism

To learn more or to enroll, visit the study website  If you have questions, email [email protected], or call 415-317-5748.

Local support group member Lyn’s thoughts on what he did well as a caregiver

Local support group member Lyn Preuit’s dear wife Wendy died about two years ago, after coping with Parkinson’s Disease (PD) for twenty years. We’ve stayed in touch. Recently, he attended a local PD caregiver-only support group meeting to share his thoughts about what he did well and what he could have done better. As you can imagine, his remarks were well-received. Though his wife had Parkinson’s disease dementia (aka, Lewy body dementia), his advice applies to caregivers of all diseases. (By the way, Wendy’s diagnosis was confirmed through brain donation, which Brain Support Network helped arrange.)



Keep coming to the group. You pick up more information than you realize listening to another caregiver’s problems and solutions. Even more important, you realize that you are not alone in your caregiving situation. The emotional benefit is incredible when you share your outrageous problems with others who are fighting similar battles.

Find something to do that is just for you. You need it to sustain yourself over the long haul. Give it priority for a meaningful part of each day. Make it mandatory. You need to have something you can feel good about for yourself when the disease mercilessly grinds away the things you enjoy with your Parkinson’s person. Sacrificing yourself is not a long-term solution.

Live in denial. The emphasis is on live. Do things together. Obviously, some things are no longer feasible. We gave up skiing. But we camped, kayaked, and walked long trails. We traveled to Europe, Mexico, Canada, and the western states. We lived winters on a beach in Baja. We lived.

Exercise together with your Parkinson’s person. I helped my wife as we took long walks together. It gave her a sense of accomplishment, gave her invaluable exercise, and it made both of us feel better to do something active together. Nearly always, I was amazed how far she could walk with just a little help balancing. Even near the end, a walk around the block provided hard to find satisfaction.

Get help from a caregiver as soon as you can and before you think you can accept it. You need, and you deserve, some respite. There are some wonderful people out there to help you. We had a hard time accepting the idea of a stranger coming into our home and it took several tries before we found the right person. But looking back, I couldn’t have done it without our help. Certainly, any particular day I could have managed. But over the long haul, the very, very long haul, having help made a huge difference.

Accept that you will make mistakes. Accept that you will do things that you will regret. Understand that doing your best is more than can be expected of anyone in this situation.

At the end, Mission Hospice was wonderful.

Grief. Despite knowing her death was coming, my grief was more severe and lasting than I could have imagined. Withdrawal from caregiving has been disconcerting. I think it is reasonable to say that I have PTSD from caregiving. I am glad that I survived the battle and I am comfortable that I did the best I could.

Which begs the question: What could I have done better?

I wish I had been better able to ask her friends to visit, to have organized that effort, and to have explained that her dementia was really just very slow thinking and that her memory was largely intact. Dementia scares people away and people see it as an excuse for not visiting.

I wish I had better understood how frequently doctors over-prescribe medicine and that I had always been more vigilant for side effects. Mirapex was a popular drug early in our journey, but its unexpected side effects were horrific and withdrawal was brutal, made possible, strangely, by cannabis cookies. Even near the end, I was ambushed by a sedative that had the contrary effect of making her so agitated that one day I came to the support group meeting with a bleeding scratch on my forehead.

Sadly, over the many years of struggle against Parkinson’s Disease, there were some times that I wish I hadn’t yelled at her. But I still don’t know what else I could have done.

Lyn Preuit 08/25/22

BSN Supporting Parkinson’s Research Plus Lyme Disease Research

In October 2021, we helped a gentleman with Parkinson’s disease (PD) make arrangements for his brain donation plus donation of his cerebral spinal fluid (CSF) to Lyme disease researchers.  The gentleman had several positive tests for Lyme borreliosis.  He decided this was the best approach in terms of donating — brain for PD research and to confirm the diagnosis, and CSF for supporting Lyme disease research.  He and his family knew that the Lyme disease diagnosis would not be confirmed but this was of no concern to them since he had several positive tests for Lyme borreliosis already But he was hoping that his CSF could aid researchers.

Continue reading