Gina’s Story: Participating in the Canadian Open Parkinson Network

Photo of Gina Lupino

It was late 2013 and Gina Lupino, 36 at the time, slept for 3 weeks straight, recovering from pneumonia. Gina suspected that something was not quite right with her health, and stiffness, slowness, and ratcheted articulation in her right started got in the way of playing snare drum in a percussion band.  She would see four neurologists over 18 months, and through mostly trial and error, she heard the words, “You have Parkinson’s disease.”

Every day in Canada, 25 people hear these words, and the numbers are increasing.

A specialist recommended deep brain stimulation (DBS) surgery to improve movement skills and quality of life. DBS is a surgical procedure that involves implanting electrodes that send electrical currents to specific regions in the brain. Batteries are implanted in a patient’s chest like a pacemaker and have to be replaced. This electrical stimulation can reduce involuntary movements and tremors and increase the ‘on’ time where medications are effective.

There are certain risks as well – the most common of these are an infection at the surgical site. Other side effects include nervous system, cardiac or psychiatric disorders.

 “One of the things I’ve been looking at is moving to another province just to get this procedure, having to establish residency and a life there. But you can imagine how disruptive that is to my work, to my professional life, to my family,” said Lupino, an intellectual property lawyer specializing in U.S. patent, trademark and copyright prosecution. “I consider myself a poster child for DBS – it could be several years before I am considered – and that window is closing.”

“Some days it’s hard to walk, it’s hard to just move. You feel like you’re embedded in molasses,” she adds.

Photo of Gina Lupino and her dog Zac

She is focused on living well with Parkinson’s while awaiting treatment, however. “I work out a lot now and prioritize sleep. My life has changed so much since 2016 and the family now sees that I am thriving,” she says.

Lupino considers herself lucky with her own law practice and the ability to work from home when she is not well or to use speech-detect software to write when her right hand does not co-operate.

That law practice includes a link to research. She works part-time in a national research center on the UBC campus, helping chemists with intellectual property matters. Some of these chemists produce radioisotopes for Parkinson research. A subtle suggestion from one of these researchers and a formal referral from her neurologist introduced Gina to active participation in Parkinson’s research. When she learned about the work of the Canadian Open Parkinson Network (C-OPN) and she signed up as a patient for the ongoing studies.

“Research is for future generations—for me, I try to forget about the future and focus on staying healthy right now,” says Gina.

The team behind C-OPN sees potential in the collaboration between patients like Lupino and researchers as having potential to unlock the mysteries of Parkinson’s. By participating in the Network, Canadians with Parkinson’s contribute to a national patient registry; a de-identified database and biobank all with the potential to provide data at scale between research centres and to serve the goal of accelerating discoveries in Parkinson’s.

More than that Dr. Martin McKeown, a Principal Investigator at the centre that Gina is registered with, sees the opportunity for this information to be applied rapidly to help people within the network today. “We’re now getting into the area of precision medicine, where the therapies might be tailored to the individual. If we can take a heterogeneous condition like Parkinson’s and stratify it into different subgroups who respond similarly to different therapies, knowing what subgroup you were in may guide your clinician into how to tailor the therapy specifically for you,” he says.

Whether for personal benefit or to help future generations, patients collaborating with researchers play an active role in the success of the Canadian Open Parkinson Network. Learn more and join Gina Lupino and hundreds of other early registrants across the country at https://copn-rpco.ca/.

12 thoughts on “Gina’s Story: Participating in the Canadian Open Parkinson Network”

  1. My daughter is a very determined young woman. It has been difficult for my daughter and our family to comprehend this disease. I hope she continues to make progress and help others deal with this life altering situation.

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    • I applaud your efforts and the effort to function in a world that normal seems out of reach. Your story made me feel less alone I am working with Mayo Clinic for answers on a rare blood disease, they are researching. I wish you the best and as you say the future of others can make it worth while. It’s the good days that make it worth it all.

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  2. Gina is a very amazing and inspirational woman. I’m very happy she found your organization and she’s a terrific spokesperson as well. I wish Gina continued good health and hope treatment is found to halt and cure Parkinson’s Disease!

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  3. What an inspiring story! Gina is an amazing woman who brave and determined. Wishing her continued health and hoping for successful treatment for this disease.

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  4. Gina is a beautiful, intelligent, strong, woman. She is a fighter and winner. She doesn’t give up and keeps going. I wish her good luck and complete healing of her condition.

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  5. Hi Gina, I just read about you and your medical issues. We are your cousins
    Laura, & Tony Minella. I am so proud of how you are taking care of yourself and
    staying strong. Your positive attitude is an excellent healing device for you. Stay strong. Merry Christmas & Happy New Year. Love Laura & Tony

    Reply
  6. Hi Gina, Wow, I remember the little girl who lived next door to us, and she wanted to help John, my husband in the yard with these big heavy rocks! You are still that strong person, but all grown up now. We truly wish you the best. I miss the old days, I really do. Love Lorraine, John, Anthony, Jonathan, Nick, and Joseph. Happy new year!

    Reply
  7. Is the C-OPN still taking participants? I submitted my name in Dec. 2020 and again in Jan 2021 but have had no contact. Any explanation? Should I just wait?

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    • Hi Lou,

      Yes, C-OPN is still taking new participants. We contacted the network manager and can confirm that your interest in participating was received, and appreciate your efforts in taking part in this project. You are currently in the cue to be contacted by the site coordinator, and should hear back soon on next steps.

      If you have any questions, do not hesitate to reach out to the national manager national.manager@copn-rpco.ca.

      Reply

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