What about the Symptoms We Can’t See? Diane & Scientists Discuss ‘Invisible Faces of PD’

eblast_pam2015_week4_image#2Do you find that your ‘invisible’ symptoms — the ones that people can’t see like sleep issues or dizziness — are the ones that bother you the most? Many people with PD say this is the case, but just 15 years ago, this wasn’t widely known.

The good news is that this past April, a group of scientists got together to speak about these symptoms at a meeting, “Non-motor Symptoms: Unraveling the Invisible Faces of Parkinson’s Disease,” hosted by the New York Academy of Sciences (NYAS) in New York, NY.

The better news? Diane Cook, a person with PD, and an Advisory Council member and Research Advocate with PDF, was a keynote speaker. She spoke with about 100 scientists about the impact of non-motor symptoms on the PD community and the urgency for finding solutions and treatments. Her comments are included in the meeting’s final report, which was published this week here.

Why is this such a big deal?

  • First, the conference signals greater awareness of non-motor symptoms of PD. Scientists have long understood the impact of the symptoms they can see — tremor, slowness and dyskinesia. The conference shows how far the field has come in understanding symptoms doctors cannot see — depression, fatigue, orthostatic hypotension, sleep disorders. There is still work to do — unfortunately non-motor symptoms tend to be understudied by scientists — but PDF is making inroads by funding studies into the most debilitating of non-motor symptoms such as fatigue and gastrointestinal symptoms.
  • Second it illustrates that scientists are beginning to listen to patients. Does this concept sound less than revolutionary? It may seem common sense, but the truth is that 15 years ago, non-motor symptoms were still misunderstood and a person like Diane would likely not have been invited to share her experience. As Diane herself told us: “PD used to be called just a movement disorder until we — the patients — spoke up about the non-motor symptoms that we were experiencing. For example, neurologists used to say that pain was not associated with PD … until we convinced them it was. Now PD is classified as a multi-system disorder!”

This illustrates just how important it is for people with PD to have the opportunity to speak up … to tell scientists which issues more urgently require solutions and new therapies.

In PDF’s work, we call this ‘patient engagement.’ After 10 years of advocating for patient engagement in the PD community — which means making sure that scientists hear from people with PD who can help to inform their research — we think Diane’s involvement at the NYAS conference demonstrates progress. And that progress is due in part to people like her who have been trailblazers.

But we need more advocates on board!  So if you’re interested, learn more about our online research advocacy course here or read our articles below.

And please help us thank Diane for her continued work to share her PD experience with scientists. We know that because of her, some will better understand the urgent need for treatments for non-motor symptoms.

PDF is committed to making patient engagement a reality in the PD community. We know that when the two sets of Parkinson’s experts come together – those living with it and those dedicating their careers to studying it  – we can more quickly solve, treat and end Parkinson’s disease.

6 thoughts on “What about the Symptoms We Can’t See? Diane & Scientists Discuss ‘Invisible Faces of PD’

  1. Sue Fulmer

    My husband has Parkinson’s Disease among several
    Other health issues. We want to stay engaged and
    Informed.

    Reply
  2. kim l. blakey

    I was recently diagnosed with PD and I have been having a lot of dizziness and did not know what it was but this article is giving me a lot of information and also the medication and I’m on when it quit working I have problems with my motor skills, my speech and my bladder. I am heading to my neurologist in Dallas and I am giving him all this information and see if there is anything else that can help me along the way.

    Reply
  3. Carol Rix

    Thank you for bringing awareness to all the other symptoms! I was diagnosed in 2006! I have had all of the symptoms plus more! It’s so frustrating. I don’t drive anymore and I’m wheelchair bound. Most of my time is spent in bed. No one ever talks about dementia and Lewey Bodies. If you don’t know what it is,look it up! I think I have that too! Ugh! Somebody help us!

    Reply
  4. Bette Jo Lowery

    I have had PD since 2011. I want to stay informed and updated about it. Also I hope I can be helpful with dealing with this disease.

    Reply
  5. TERRI SIEBERT

    No one knows like my husband knows all that I go through when no one else is around–sleeplessness, terrible leg pain, dropping things , mobility problems,Freezing problems, bladder, crying a lot and more. He loves me and helps me so much, But he also let’s me do what I can. He’s my SUPERMAN!

    Reply
  6. Delores Moerer

    I was diagnosed in 2004 I was so scared & read a lot about the disease, important # 1, I found out that I had to stay active to feel almost normal so I advocate activity keeps one out of that wheel chair. Most of all faith is ever so important plus to know one can still lead an almost normal life a lot is the self desire to do so. I see so many articles where they urge one to be active and it does not help one to be full of self pity.
    Yes I know I am lucky perhaps to not have the disease so bad, but the age 87 is of no help yet I feel fortunate and to have all this wonderful advice & great Drs.
    Delores Moerer

    Reply

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