An interview with Angela Williams: Advocacy on January 13, 2025.
Biography
I’ve been married going on 18 years to my husband Brant. We have 2 children, our daughter who is in college and our son who is a junior. I’m 45 and have been battling motor and non-motor symptoms since I was 21. At 38 due to undiagnosed PTSD and stress I had hit a tipping point with my that spiraled symptoms out of control to the point where we moved from the Midwest to Phoenix (my birthplace) for a better quality of life. While my quality of life was better out here, we did not have a full picture of what we were dealing with. I still had symptoms and other things pop up prior to my Parkinson’s disease diagnosis in April 2023.
Can you tell me more about your Advocacy?
Overall I am a pretty quiet person who enjoys advocating 1v1 locally, online or over the phone. I’m slowly getting more comfortable with an online presence.
I usually end up with people reaching out online or through a mutual acquaintance. From there it is 1v1.
My history of chasing answers across many diagnosed conditions, guides me with understanding the frustration others go through. Navigating the diagnosis process from waiting, being misdiagnosed, diagnosed with only part of the whole picture or not getting any diagnosis. I know it can be filled with emotions from scared to frustrating, mixed with so many thoughts from wanting to give up to fighting like heck.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is to help others wherever they are at in life or on their journey. Since diagnosis, I’ve had to find ways to help that is less taxing on me physically and emotionally.
What type of goals do individuals with Parkinson’s have when seeing your Advocacy?
I hope that PwP learn to research everything they can about their personal journey.
What effect can your Advocacy have on an individual with Parkinson’s?
Hopefully a positive impact that will want them to look at everything in their life and align what they need vs don’t need. Learning to be content after grieving and forgiveness are worked through.
What would you like to see as a future goal for your Advocacy?
To bring more awareness to other conditions that impact the PD symptoms or overlap. Really focus on educating people. Example like mine. The Fahr’s limits(currently) being able to make new neural pathways on the calcified areas in the brain. So I have to really focus on the non-calcified areas of the basal ganglia. I would not have known that without researching and diving in for the answers.
2 other quick examples are the link between the cerebellum and cerebellar tonsils at the back of the brain and PD like symptoms. I have Chiari malformation. Brain decompression in 2013. Even after the surgery, I still have symptoms. Humidity brings swelling in my head. That creates headaches, cognitive and motor symptoms. I am fully aware of how weather impacts my body from a condition standpoint. It helps me to be proactive during certain seasons with what I do and when.
The other one is. I have lupus. Just the skin form. Not systemic. What we thought was systemic lupus symptoms was the PD/Fahr’s flaring at the time the lupus started. This was all triggered by a PTSD situation and stress. I get PD related skin issues along with the lupus skin issues. Both for me flare with stress. All symptoms from everything flares with stress in me.
What events do you participate in?
Walks/Runs, Box 4 Bucks for the first time, I want to start fundraising for regular runs as well. I will be running in the Muhammad Ali Walk the fight, Run the distance in Phoenix on February 8th. It will be my first race for the year. Having covid over the new year set me back a bit.
How does this also assist the caregivers?
I think helping patients know as much as they can about linked or overlapping conditions/symptoms helps them feel more in control of their body, they ultimately don’t have control over.
How can someone get in touch? What is your website
Facebook:
Neuro to Fahr’s
Angela Williams (Burns)
How can others also become advocates for awareness?
Learn your body with PD. Research your own health first. Learn how your body works with PD and your related or unrelated conditions. Next have 1 conversation with a patient or someone who thinks they might have PD. If you hear something from them, you know nothing about researching it. Educate yourself about other symptoms. You may end up with it at some point. Then repeat these steps expanding conversation to strangers you see struggling in public.
In your opinion, what is the key to effective advocacy?
Being genuine.
How can we better fundraise to support a cure for Parkinson’s?
I think small, ongoing fundraising. Using our personal passions and talents to fundraise is good. Example, painting or creating artwork, refurbishing furniture and using that as a silent auction item. A program like that can be ongoing online.
What other activities do you undertake to help improve and support your daily living Ex exercise and alternative remedies?
Besides the steady learning I’m doing with resistance, running and stretching?
I use sound therapy. Frequency, bi lateral sound stimulation. I use that time to be quiet and reset in the middle of the day.
Why should people who don’t have Parkinson’s care about this?
With the steady increase each year, we are all touched by it within our circles. We know there are risk factors from environmental, PTSD to genetics. I lived with PTSD for about 2 decades before it was diagnosed. By then the effects of the PTSD had already begun to show on my health.
Have you had any family members or relatives affected by Parkinson’s disease?
My Uncle and his son(my cousin).
If you had one song that would tell us more about you or represent your life, which song would it be?
Time Stand Still by Rush