Why I’m Changing Research for My Husband: A Q&A with Anne Newbould

In this Q&A, Anne Newbould, a care partner to her husband with PD, shares her experience being involved in the PDF Community Choice Research Award. Last year, when PDF launched the award by asking, “what is the most pressing question for scientists to solve in PD?” she answered: fatigue. Her research priority was selected from amongst hundreds of submissions. This week, to address the symptom she helped to identify, PDF is bringing together experts and advocates in Chicago, IL.

newbould-anne1Q. What motivated you to submit your research idea for PDF’s Community Choice Research Award?
A. My husband of over 40 years, James, has been living with Parkinson’s since 2009. As the care partner for the love of my life, I’m always going to do whatever it takes for him. I got so excited when I found PDF’s survey last year that asked the patient community, “what is the most pressing question for scientists to solve in Parkinson’s?” For the first time, I felt I could shed light on fatigue, one of the ‘invisible’ symptoms of Parkinson’s, which impacts so many of our loved ones. You have to start somewhere when you want something to change and what better place to start than by working with PDF?

newbould_anne_jamesQ. Why is fatigue your research priority for Parkinson’s scientists?
A. I’ve seen firsthand the devastating effects of fatigue in Parkinson’s disease. My husband was the type of person that was always “go, go, go,” from leading a ministry to co-owning our scuba diving business together. After his diagnosis and retirement, it was very concerning to watch him go from being 100 percent active, to not wanting to get out of a chair in the morning.

Though fatigue affects more than half of people living with Parkinson’s disease, it can often be overlooked or untreated. I have a background as a medical language specialist and am seeing this from all angles. But the average person may not be told that fatigue is part of Parkinson’s disease. I want to make sure that people understand that fatigue in Parkinson’s is very real and needs to be addressed.

158Q. What does it mean to you to have your idea selected for the PDF Community Choice Research Award? 
A. I am grateful for PDF’s continued efforts to involve people with Parkinson’s and their care partners like me in research. Having my idea selected for PDF’s Community Choice Research Award is like a breath of fresh air, because it offers hope not only to my husband, but everyone else touched by this symptom. I am encouraged by the opportunity to work with PDF and leading experts in the field to find solutions for fatigue in PD.

Anne Newbould is a medical language specialist living in Cleveland, TN. She is a care partner to her husband James, pictured above, who lives with Parkinson’s disease.

9 thoughts on “Why I’m Changing Research for My Husband: A Q&A with Anne Newbould

  1. Patricia Parkhill

    I applaud the effort being made to bring this symptom to the forefront. There r days my fatique only permits me to function a few hrs in the day. I’ll have decent days then, it hits me like ton of bricks. I try to figure out what did I do differently? . Is it caused by my body (what I refer to as ) defying gravity with every movement. I’ve viewed dr Marshall Davidsons’ you tube videos on the ” Top Ten non- movement symptoms of PD. The dr himself has PD, his animated videos r relatable ” what PD feels like” was his first Are nootropics ever prescribed? I recently been researching what they have to offer those with pd. PD Fatigue hopefully will be given the attention so that answers can be found

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  2. Christine Sherriff

    I am so pleased to see this problem being addressed. If I could sit all day I would be happy. It is an exhausting effort to move. There are many symptoms of this disease that one does not see, but as a Parkinson’s patient since 2001 I must say fatigue is my number one issue with this illness. Although I have told my physician of my fatigue level there is never much response to my dilemma of how to counteract it. Obviously, she has no answers for this complaint since it hasn’t been truly studied. I am hoping to hear of great things that come from this study!

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  3. Debra Rose

    My husband of 39 years has been recently diagnosed with PD after being ill for 3 years and going from specialist to specialist with no answers until this year. His very first symptom was this fatigue that has gotten so much worse and the dizziness. Neither his sleep med, antidepressant or his muscle relaxer has helped him feel better. He has gone from a very active person to an isolated inactive almost home bound person. I am excited to see this topic as a focus.

    ~ Debra Rose

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  4. Wayne King

    I have been wondering if fatigue has any relation to the fear I feel at times. For example, when I need to shower and feel very tired I feel afraid, afraid I might fall. When I feel the most fatigue I am afraid to meet people and that is not my nature. I was diagnosed 9 years ago and 4 years ago developed dystonia.

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  5. David Heuck

    I was diagnosed in 2005. I have a photo, a year earlier with my right arm in a sling, on top of the highest mountain in the Big Horn’s. I thought I had injured my arm weight lifting. My Parkinson’s presents with pain. Now, 10 years later fatigue, is a major problem, causing increased pain. I am now in a “holding pattern” having been through two operations and waitng for my Deep Brain Stimulation hardware implanted in my skull, neck and shoulder underneath my skin to heal. I believe fatigue will continue to be a major if not the worst symptom I will have to manage.

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    1. Rick Hall

      Had the same operation march of 2013,…it has helped a bit, still a struggle. Hope your settings help you, let us know how it goes.

      Reply
  6. daboice@verizon.net

    i was diagnosed 2007. It is exhausting trying to keep up what little is left of what used to be a very active day.
    It would be wonderful to have some relief from this problem.

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  7. Ann Joseph

    I suggested the topic of fatigue over a year ago and was told a seminar of experts would study this topic last October. As this is the most debilitating symptom that affects us short of total disability, I hope to see a real commitment by PDF to follow through with addressing this issue and giving us hope for a better quality of life.

    Reply

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