PD Avengers Member Spotlight
Diana Steiner
When was your loved one first diagnosed?
My father-in-law was diagnosed in his late 70’s, almost 10 years ago.
Can you tell the story of his path to diagnosis?
Diagnosis came after much investigation into significant, unexplained weight loss. It took quite some time to get from “undetermined stomach problems” to Parkinson’s. The absence of two hallmark symptoms, tremor and loss of smell (it was lost years ago as a result of an accident), made the diagnosis a surprise for everyone!
Why did you want to become a PD Avenger?
To encourage advocacy and education. The importance of teamwork must be promoted. Many, including PwP, care partners, medical professionals and government officials do not recognize the significant positive effect a good team has on wellbeing. Until Parkinson’s is eradicated, we need to work to improve the quality of life for everyone touched by Parkinson’s!
What do you see is your superpower as a PD Avenger?
I’m a planner by personality and career but my attention to detail and determination are my superpowers. A plan assists in determining progress and evaluating if adjustments are warranted. The power of a plan is diminished if there isn’t someone with the determination to monitor and see it through!
What is something you wish people knew about Parkinson’s Disease?
Not everyone with Parkinson’s has tremor and not everyone with tremor has Parkinson’s. Essential tremor runs in my mom’s family, so while people assume she has Parkinson’s, they don’t recognize it in my father-in-law.
What do you like to do for fun?
I love to spend time with my husband as he experiments in the kitchen and to escape in a good book. We also love to travel and experience new places. Spending time outdoors, in the quiet, is always rejuvenating.
What advice would you give to the family of someone who is newly diagnosed?
Advocate for your loved one. Ask for and search out as much information as you can, from reputable sources. Do not go down internet rabbit holes! Help your loved one build a support team. This can include support groups, other PwP, and various health care professionals. This is especially important for those diagnosed later in life, rural residents and those who are not technologically savvy as they may experience additional barriers to obtaining information and care.
What do you wish you were told when you were diagnosed?
Share the news of your diagnosis, don’t hide it! Join a support group or find someone on the Parkinson’s journey to talk to. Reach out for and accept support; this is a life-changing diagnosis but being surrounded by a team will make it easier for everyone.
Is there anything else you would like to share with our community?
Communication is essential! Talking about PD is part of, and will improve the journey.
