Elisabeth Morris from Indiana Parkinson Foundation

An interview with Elisabeth Morris from Indiana Parkinson Foundation on February 5, 2024 by George Ackerman, Ph.D, J.D.


Please tell me a little about your background.

My Mom was diagnosed with brain changes indicative of Alzheimer’s in 2007. I was only 17 at the time and it was just her and I. My parents divorced when I was a young child and my sister still lived in Southern California. (My mom and I moved to Northern Indiana in 2007). For years her and I fought to get an accurate diagnosis or more accurately, I wanted so hard to find something wrong that was fixable. I had to take it one day at a time. I was so young and honestly had no idea what I was doing. I am sure there were a lot of moments that I messed up, but my heart was with her and I wanted to just make it better. In 2012 my mom moved in with my husband and I. We had just gotten married and lived in a one-bedroom apartment in Indianapolis.

We were just starting out, learning how to be adults ourselves, while taking care of my ill mother. She had started hallucinating more frequently and her cognitive abilities started going downhill. It was weird. It was not just the forgetfulness that you hear often associated with dementia. It was much more than that. It was as though some days her brain just switched off…she couldn’t figure out how to buckle her seat belt or wrap a present. It would take her an hour to iron a single piece of clothing and some moments she would get completely lost off in space – as though she was no longer there. We tried different medications and doctors just kept piling new ones on – meds for anxiety and depression, meds for insomnia and forgetfulness, and vitamins this or that.

By the time 2015 rolled around, her med list was so complex that I couldn’t keep up. Her hallucinations were nearly constant and it became dangerous for her to live at home with us. After falling out of bed one night, she was admitted into an inpatient geriatric-psych hospital. She stayed there for a month…often in restraints while they worked to wean her off of her meds and figure out what exactly had been going on. That is when she was diagnosed with Lewy Body Dementia – the same day Robin Wiliams’ wife shared that he had also suffered from LBD. As I learned more about this disease, the more frustrated I became that I had not heard of it before. Why hadn’t any of my mom’s doctors mentioned this possibility before it had gotten this out of control? The second most common form of dementia, and I was just hearing about it for the first time. Perhaps that is one reason I am so passionate about speaking out about this dreadful disease – no one else needs to be kept in the dark for so long. No one needs to go down the same path my mom and I went on. We need more education – for both the public and within the medical community – about how to better treat this condition and be proactive about the care for LBD. My poor momma has had to suffer so much and my prayer is that with our story, we can help make enough ripples in the water to create change!


Can you tell me more about your organization?

I am the Administrative Assistant for the Indiana Parkinson Foundation (IPF). At IPF we offer education, access to resources, support groups, and exercise classes (The CLIMB) to those living with Parkinson’s disease and their loved ones. My hope is to not only increase awareness for PD but also increase advocacy in the community as well as within our own organization for Lewy Body Dementia (both Dementia with Lewy Bodies and Parkinson’s disease with Dementia). I will include a link to our website in the body of the email.


What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?


My passion is dementia advocacy and caregiver support. However, because of my mom’s diagnosis of Dementia with Lewy Bodies, I have become increasingly passionate about helping raise awareness for the connection of Parkinson’s disease and cognitive decline and LBD. My goal is two-fold: I want to better the livelihood of those living with a Parkinsonism disorder as well as be a voice for their caregivers and loved ones.


This past Summer, my mom’s health quickly declined after being ill in the Spring. She wavered on the border of passing through the months of June-August and then rebounded a little bit to keep her at a new baseline. Anyway, through that stressful phase of her care, I reached out to my church and asked for prayer and grief support. I was connected with Kim Williams – another member of our church and Executive Director for Indiana Parkinson Foundation. We immediately connected with our passion to help others and the obvious link between my mom’s diagnosis and Parkinson’s disease. After spending some time sharing ideas and goals, I was hired to help the IPF as their Admin.


What type of goals do individuals with Parkinson’s have when working with you?


We have people with Parkinson’s reach out for support and generally are interested in learning more about the resources available to them locally. We initially inform them of our exercise classes (the CLIMB), our education opportunities (for example, February 5th we are hosting a group being led by a local business owner who works with families and helping them manage their medications and helps empower them to make the right medication decisions for them). We have other educational events that helps raise awareness within the medical community by bringing medical professionals together and inviting a Guest Speaker (such as a local Neuro or Gerontologist) and follow with a panel of experts for Q&A. Additionally, we connect them with the various opportunities to join in on one of our support groups (both in-person and virtual). We also host multiple fundraising events throughout the year to raise funds to help increase our access to advocacy and provide additional resources.


What type of training and how long are the programs?


Our CLIMB training takes place over the period of two days and we have those occasionally throughout the year. Our education events usually take place over the course of 1-3 hours.


There are multiple CLIMB locations throughout the state of Indiana and each location has multiple classes available per week. The classes are taught by professionals who have been trained to support specific care and exercises to enhance the livelihood for those living with PD and their loved ones.


Our Support Groups include multiple options at multiple locations in the state. They typically last for an hour. They are for both people with Parkinson’s and their care partner, or for caregivers only. We are also working to start a Caregiver Support group specifically for Adult Children of caregivers or who are currently caring for a parent.


What effect can it have on an individual with Parkinson’s?


All of our programs are designed to positively impact the lives of those affected by Parkinsonism. Between increased strength, mobility, flexibility, encouragement, emotional support, prayer, and access to local/trusted resources (like transportation for seniors)


What would you like to see as a future goal for your programs?


As mentioned, our goals at Indiana Parkinson Foundation are to expand our reach to include the amount of increase proportional to the increase PD diagnoses. We also would like to create and build out our resources to include Lewy Body Dementia and PD cognitive decline resources. My personal goal is to share my mom’s story and to use our journey and my passion for caregiving to walk alongside and encourage and support as many people as possible that are going through the same.


What events do you participate in?


I participate in the Caregiver support groups and hope to start at least two new groups geared specifically towards Caregivers for those going through cognitive decline as well as Adult/Young Caregivers affected by PD and LBD. Another way that I participate in PD and LBD advocacy is by participating and speaking at educational events and panel discussions. I make networking a priority and try to build a large group of professionals on a local level that can aid in our mission at Indiana Parkinson Foundation.


How does this also assist the caregivers?


We provide specific support groups for caregivers only. We acknowledge and appreciate the fact that they need a safe space to discuss the unique difficulties associated with caregiving for a loved one. We also invite and encourage the caregivers to participate in the exercise programs through The CLIMB. Another way we can help support the caregiver is through our educational programs. A lot of them are geared towards resources that assist those affected by Parkinson’s disease and of course in that way helps to support and encourage ease in the caregiver’s responsibilities.


How can someone get in touch?  What is your website?

Our website is Through our website, people can choose to contact us via email or submit a request our Parkinson Pathway pamphlet. This briefly outlines the way the Indiana Parkinson Foundation provides support for those affected by PD and their loved ones. I, along with our Executive Director and Programs Director, receive email notifications of these communication requests immediately. We respond as soon as possible either via email and/or phone call. We want their connection to the IPF to be as personal as possible.


How can others also become advocates for awareness?


That is a million-dollar question. Awareness and advocacy is key. The more the community communicates and helps to increase awareness in the community, the more we will be able to empower others with the knowledge they need to help advocate. We offer several community events and fundraisers that encourage this community involvement, such as our Choose to Race 1 mi and 5k, Pickleball 4 Parkinsons, and Purse Bingo. Another way in which we can empower the community to become advocates is through our educational events for the medical professionals in our community. Knowledge truly is power and empathy goes a long way.


If you could add any questions to this interview that you may want others to learn about, what would the question(s) be?


What do you recommend the first steps are once a loved one has been diagnosed with cognitive decline, regardless of whether or not it is associated with Parkinsonism? For me, the answer would be to first contact an Elder Law attorney to have POA created on behalf of the affected. Secondly, I would say to get comfy with advocating. It can be uncomfortable and there is an art to advocating, especially when your loved on with cognitive decline is present. Thirdly, being proactive is key! Proactive in planning your loved ones care and trying to plan for what is to come as best as possible. This can feel heavy and dark, but it will allow both the affected and the caregiver to take ownership in their journey as well as allow for more room to grieve when necessary.


In your opinion what is the key to effective advocacy?


Confidence. Feeling confident that you know what you are doing and you are doing so for a purpose is key to effective advocacy. I truly believe that without passion, effective advocacy will always fall short.

How can we better fundraise to support a cure for Parkinson’s?


When the Indiana Parkinson Foundation was created, they had goals to raise a lot of money to put towards research. Quickly feeling overwhelmed and as though they were small fish in a big pond, they decided to empower those on a local level…to be there for support in every way possible for those affected by PD in our community. Personally, I believe the most impactful way to fund change for Parkinsonism is to work within the political system.


What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?


I am so happy to take charge of my own health and wellbeing and take great pride in caring for my body, mind, and soul. I am active, workout regularly, and work with a holistic medical provider to personalize my diet to what suits my body best.


At IPF, we encourage those with Parkinson’s to participate in our CLIMB programs that are available. We are also going to be hosting an educational event that is going to focus on diet and nutrition and the best ways we can support our bodies, particularly those with PD, through healthy foods. We will invite a local specialist in the area and ask other local companies that specialize in these areas to participate in our event.


Why should people who don’t have Parkinson’s care about this?


Unfortunately, there has been a great increase in the number of people diagnosed with a Parkinsonism disorder. As the population continues to be negatively impacted by the cost of medical care, government insurance and welfare programs that are necessary for so many impacted by PD, we need to become proactive in a better way to manage Parkinson’s. One way to do this is to promote more research. In order to encourage, it would be best if the community as a whole, could come together to support political measures to help enact change.


Have you had any family members or relatives affected by Parkinson’s disease?

My mom was diagnosed with dementia when she was 55. Her official Lewy Body Dementia diagnosis came later. She was so young and had so many great years ahead of her that were stolen as a result of her disease. She has lost her memory, her ability to perform any and all of the “activities of daily living.” She is now in a wheelchair because she lost the ability to walk and sit upright. She has lost her vision and ability to communicate. Lewy Body Dementia has stolen my mom’s life.


If you had one song that would tell us more about you or represent your life which song would it be?


Oh, that is a wonderful question and tough! However, Landslide by Fleetwood Mac would be my song of choice. It speaks of how time and age affect us all. How time goes by and can take so much, including those we love. Change is inevitable and both my mom and I have had to change our roles and redefine our relationship as mother and daughter. My mom and I went to see Stevie Nicks in concert years ago and when she sang this song we just embraced one another and cried together. Even though nothing was said, it was as though we both knew that things were going to change and we would have to change, too.


If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?


“Oh, I’ve been afraid of changing, because I’ve built my life around you. But time makes you bolder, even children get older, I’m getting older, too.” (Landslide, Fleetwood Mac)


Is there someone you know that would also like to share their journey or advocacy? What is their name, website, and email?


I believe a woman who also works at IPF in our marketing department that has PD is going to reach out. Her name is Jennifer Joyce.