My First PD Trial Experience

I decided to get involved with a clinical trial to evaluate a new way of doing neuro-stim without the invasive methods which are currently in use.

I applied using the Fox Foundation Trial Finder which by the way is a great service to our community.

I left enough contact information and I had a phone screen where it was determined that it would appear that an actual evaluation would be a good thing to try.

I went into the hospital where the clinical trial was being done and met with the research assistant who would be running the program after signing several papers and answering some basic questions I was scheduled for a thorough PD evaluation.

The PD evaluation was tough and long – mine lasted about 2 1/2 hours and I was told 3 hours is typical. Also, to get a true baseline they asked that I stay off my medications that morning. Boy I missed the meds! And by the time I was done I felt really wiped out.

We then scheduled 10 sessions 5 days a week

The sessions were actually easy.

I came in and they put a neoprene cap on my head and attached a very small battery with leads to the neoprene cap. They had to make sure that the electrodes were getting through and they had a little program running on a laptop which showed if the leads were making good connection with my scalp. Then after 20 minutes the session was done!

After the 2 weeks I had another eval same as before. Again a very draining experience.

Right now, I am on a schedule of once a week for 5 weeks. After that I will have another eval and then 5 weeks off.

To guarantee scientific correctness all of the previous testing was done without my or the research team knowing whether I was receiving the actual stim or a placebo.

The next sessions after this point I am guaranteed the actual stim and of course I am curious if I will notice the difference.

Anyway, fellow Parkies feel free to comment and ask questions.

Joe

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (3)
  • Chris H. moderator
    12 months ago

    Hi, Joe – thanks so much for sharing this valuable insight with us! Participating in a clinical trial is a great way to help pave the way for future treatments. The Fox Trial Finder is definitely an amazing resource for the PD community. Did you have any concerns or apprehensions about participating? – Chris, ParkinsonsDisease.net Team Member

  • jposterling author
    12 months ago

    Honestly I did not have any concern about participating. I feel that I am supposed to do what I can to make things better for other people and I viewed being part of a clinical trial as my way to help this disease become history.

    As a plus the clinical research assistants have been great///!

  • Chris H. moderator
    12 months ago

    That’s an awesome perspective, Joe! Glad to hear you’ve had such a positive experience. Please keep us updated! – Chris, ParkinsonsDisease.net Team Member

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