Parkinson’s Disease Patient Advocacy Q&A

We recently had the opportunity to speak with Cathy Molohan, who was diagnosed with early-onset Parkinson’s disease in 2011. Cathy now works with the Berlin-based Yuvedo Foundation, a patient advocacy group committed to advocating for more research and development to find a better treatment for Parkinson’s disease. To better understand the patient’s experience of being diagnosed in midlife with early-onset Parkinson’s so that we can design better clinical trials to meet patient needs, we asked Cathy to share her experiences.

Amber McCallister: Cathy, would you talk us through your journey?

Cathy Molohan: I was diagnosed with Parkinson’s disease when I was 38. My husband noticed a tremor in my right hand, and we decided I should have it checked out. My doctor ran a few tests and advised me to see a neurologist. I was able to make an appointment fairly quickly. On that Friday afternoon, the neurologist told me that I had either Parkinson’s disease or a brain tumor and to come back Monday for more tests and have a good weekend. Needless to say, the weekend was not great.

AM: I’m sorry you had an unfortunate interaction at such a stressful time. Once you moved past that, what were some of the primary challenges you faced?

CM: Obviously, it was a huge shock. We all have a picture of Parkinson’s as an older person’s disease. Only after doing some research did I realize that it affects many young people, too. When you’re diagnosed young, you’re in the middle of your life. I had two small kids, a husband and was running my own business. People in my situation suddenly have to cope with the great unknown. Nobody can tell you how the disease will progress and what will happen. It was very tough to tell my children, customers, and staff. Everybody was wonderful, but that’s not always true. Stigma is a huge factor – being rejected in your job or for a mortgage application. Your health status can impact that. The diagnosis can hugely compound the usual financial and family worries.

AM: What do you wish researchers could know about having Parkinson’s disease?

CM: I wish researchers could know how complex Parkinson’s is. I think on paper, they probably do; they’re medical professionals and experts in their fields. However, they should consider the full spectrum of symptoms and what they are targeting. Parkinson’s has up to 40 symptoms that present, which will be different for everyone, although we don't know why.

It’s extremely important to ask people what bothers them the most and try to understand what it means to live with the symptoms. Some are quite obvious, like tremors, which, of course, are very debilitating. But there are hidden symptoms, non-motor symptoms. For many of those who have Parkinson’s, depression, sleeplessness or urinary issues, stiffness, or struggling to turn over in bed – these might actually be worse.

AM: I’ve heard from other Parkinson’s advocates that researchers could be thinking about the wrong symptoms and designing drugs that are not necessarily going to improve the most important symptoms. What would you like researchers to know when they’re designing clinical trials?

CM: It’s imperative to listen to patients and design trials not about them but with them. For example, you might be asking people to fill out forms. But people with Parkinson’s struggle with handwriting, whether because of the tremor or stiffness in their hands or because the brain connection doesn’t work ideally. Or, if the researcher is asking the patient to use a smartphone, the buttons and symbols should be large to make it easier to operate. It all comes down to thinking about what the patient needs. Otherwise, you’ll have high dropout rates. And we all want to avoid that because we all want a cure.

We all want to improve research, but we also have jobs, kids, and busy lives. Assuming we can travel to a site for a day or a week is unrealistic. And bear in mind that delays can be particularly bothersome if the patient is taking part at a physical location. I’ve timed my medications in a certain way, and if the medication is wearing off, and I’m sitting in a hospital waiting area, shaking, worrying about my next dose…try to put yourself in my shoes.

AM: What does improvement look like to you?

CM: The most meaningful improvements are the things that would make me a little less stiff and a little less slow. I can swim and cycle and jog. But when I get up in the morning, I feel like an old lady.

How we can help

Breakthroughs in treatment and improved care are bringing hope to the community living with Parkinson’s disease. At Parexel, we are devoted to advancing the evolving research in identifying biomarkers for PD that can lead to earlier diagnosis and slow the progress of the disease. Our strong team of commercial strategists, clinicians, former regulators, and market access experts can partner with you to de-risk your drug development and illuminate the path to commercial success.

With Parexel Biotech, we promise the personal, responsive, and committed approach of a small CRO, along with all the benefits of a large CRO, to help you develop life-changing treatments for patients. Connect with us today.

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