Nashville cats, play clean as country water
Nashville cats, play wild as mountain dew
Nashville cats, been playin’ since they’s babies
Nashville cats, get work before they’re twoWell, there’s thirteen hundred and fifty two
Guitar pickers in Nashville
And they can pick more notes than the number of ants
On a Tennessee ant hill
Yeah, there’s thirteen hundred and fifty two
Guitar cases in Nashville
And any one that unpacks ‘is guitar could play
Twice as better than I willJohn Sebastion, 1966
As a patient advocate, I have been on the steering committee for the TOPAZ trial (more on that below) for several years. All involved with the TOPAZ trial meet every year during the Parkinson Study Group’s annual meetings, which brings together people who are involved in clinical studies in the United States. This year the group met in — wait for it — Nashville, TN. So, last Thursday, Mr. Twitchy and I headed to Nashville for work and fun.
Nashville is known as The Music City. For a reason. Well, for lots of reasons. Music in one form or another happens everywhere. At the the airport. In every bar on Broadway. In the party buses that carry dancing and singing (and drinking) revelers all around the city at night. Even one of our Uber drivers was an aspiring singer and serenaded us through the whole ride.
On Thursday, we went to the Bluebird Cafe where both new and established singer/songwriters perform in an intimate cafe. (Enjoy a snippet of Aaron Barker’s performance.)
On Friday night we went to the Grand Ole Opry. On Saturday, we spent hours at the Country Music Museum and Hall of Fame, and did not have enough time to see everything. (Earlier on Friday Mr. Twitchy made a solo trip to the Gibson Garage to ogle at a bounty of that famous guitar-maker’s wares. He said he was too intimidated by the people playing to play any himself, and vowed to start playing his own guitars at home again.)
OKAY, Back to the Parkinson’s Study Group
TOPAZ stands for Trial of Parkinson’s and Zoledronic Acid. As our PD progresses, we tend to fall more and get injured more. Dr. Carlie Tanner and her team are investigating the use of a known drug, Zoledronic Acid, to see if it can help people with PD by reducing the number of fractures from falls. Dr. Tanner, reviewed the progress of the study and what was needed to complete it by next summer. Recruitment for the study ends in February, 2025, so there is still time for you to sign up.
To participate in the study, you do not have to leave home. A nurse will come to you to administer the drug (or placebo) through an IV infusion. You will be asked to fill out questionnaires periodically and will be reimbursed for your time. To participate you must be over 60 and have been diagnosed with Parkinsons or a related Parkinsonian disease such as Lewy Body Dementia or PSP. You cannot be on another drug for osteoporosis. For more information about the study, please read my blog about the trial. If you are interested in participating, click here . The Invitation Code is Twitchy.
The Hallway Meetings
As at any conference, there are often more meetings going on in the hallways than in the lecture halls. I ran into several people I knew from the PD Community and was introduced to others. Denise Coley, a super advocate for PwP’s, introduced me to one person as the woman running the largest support group for women with PD. I had to think about that for a minute and realized that she might be right. Sunday Mornings with Twitchy Woman and the programs that were spun off of that have reached over 2500 women internationally since we started meeting at the very beginning of the Pandemic in March 2020. That is something we can all be proud of and it happened because of all of you!
Other Twitchy things of importance
Thank you to those of you who have donated to keep Twitchy woman afloat in 2025. So far, we have raised over $1600 in the first week towards our goal of $5000. You may still make a donation at any time by clicking here. Your support is really appreciated.
For those of you diagnosed 10 or more years ago, please fill out this short survey online. I want to hear from you why you are living well (or not so well) with Parkinson’s for so long. What I heard several times at the meetings is that our voices are becoming more and more important in the research community. I think the researchers are finally realizing that our authentic voices are needed to help determine the direction of their research. They need to hear from US what we need, how we are doing, and what is (and is not) working for us. By participating in this survey, we can give them our roadmap for a healthy life with PD.
Have a great week
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