An interview in memory of Mickey with Anne Smith, A Life well Lived
“In Memory” Interviews… In memory of all those who lost their battle with Parkinson’s and the caregivers who keep their memory alive forever. Their voices will live on!
Please tell me about yourself.
I was born and raised in Philadelphia but lived in New Jersey for the past 26 years. I work in aviation and have also lived in other states around the country.
Tell me about your loved one who passed.
There are not enough words. My father was a fundraiser and spent his entire life helping those in need. If he felt someone was having a bad day, he’d anonymously send them flowers or special surprises to know they were loved. He spent his life helping others. He absolutely showered me with love. No words on his capacity for others and love. He always knew the right words for peace, no anger. He had the funniest but best phrases that truly got me through the hardest times. People called him simply, “Chief”. He was so smart, cultured and talented as a guy who grew up in a very difficult childhood. He left for Amry when he was 17.
What family member had Parkinson’s?
My father. My Uncle battles it but is still with us.
What was it like for you to be a caregiver?
I cried a lot. I knew something was “wrong” with my dad in 2009, but we couldn’t get answer. He was diagnosed October 3, 2013. Fifteen days later, I was diagnosed with cancer. I could not tell him, so he didn’t worry & he was the focus.
How did Parkinson’s impact your family and your life?
As you know, watching your best friend and the person you love the most fall apart yet never complain crushes you. You’re helpless, You fight for them. It took away a man who should still be here doing his charity work. And my best friend.
When were they diagnosed?
October 3, 2013, but showed signs at least 4 years prior.
What year did your loved one pass?
August 19, 2016. Very suddenly. A PD related issue required surgery. On paper, he was so healthy aside from the PD. He had a very sudden post-surgery related embolism, collapsed and died in front of me the day after a visit to the doctors where all was fine.
What are your fondest memories together?
Too many to name! Hatteras Village, our love for Pavarotti, baseball, drives listening to music. Just being together and we always laughed.
What else would you like to share about your loved one?
He spent his life helping others. I believe he still does, just through me now. He was so humble with a heart of genuine gold who lived to help others.
What memory do you want the world to remember forever?
His smile. His genuine love for his family and friends. His total devotion to helping those in need. The funeral director had to split his funeral into a third wake due to the number of people we knew nothing about who flew from other states, drove long distances just to tell me what my dad had done for them.
Can you tell me more about your Advocacy?
I participate in as many events as possible since I can fly for free. I do one annual Michael J Fox Fundraiser each year in my dad’s honor. I am on my 31st PPMI medical study as a first degree relative. I am a Parkinsons Ambassador and badger politicians for funding.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Seeing the improvements that we would read about when my dad was alive come to fruition. Unfortunately, he did not live to see the ones he was excited about.
What type of goals does individuals with Parkinson’s have when seeing your Advocacy?
Hopefully to know they have an army fighting for them and will never stop.
What type of training and how long are the programs?
I did a lot of caregiver training but since it’s such a mysterious disease, my dad had symptoms that I would have to learn about. Hours in caregiver groups, MJFF seminars etc…
What effect can your Advocacy have on an individual with Parkinson’s?
To provide hope as we know so many feel hopeless.
What would you like to see as a future goal for your advocacy?
Awareness. 1.2 million Americans suffer from PD. That’s 1.2 million families often feeling hopeless and helpless. We need to grow for them to see that we’re not going away until PD does.
How does this also assist the caregivers?
To make them feel not alone. They’re NEVER alone. I will help anyone who has questions that I personally lived and feel confident enough to help.
How can someone get in touch? What is your website?
My social media has to be private due to my job. Just reaching out to people and hoping to make more friends with the ferocious drive I must eradicate PD
How can others also become advocates for awareness? Sharing the countless videos and posts I make for others. Had we even known about PD in 2009, our journey could have been different.
In your opinion, what is the key to effective advocacy?
Awareness. 1.2 million Americans!
How can we better fundraise to support a cure for Parkinson’s?
It always goes back to awareness and people knowing that our organizations are top notch. That every dime goes to research.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
With my own medical studies and other living relatives with PD, I do worry since I have very similar symptoms to my dad had early on. It scares me.
Why should people who don’t have Parkinson’s care about this?
You could be just like us. Know nothing and it will strike at any time. My father lived a very healthy lifestyle yet still got it.
Have you had any family members or relatives affected by Parkinson’s disease?
Yes. Three uncles (one is my dad’s brother) all still with us, my father-in-law (passed 11;13;2023) and we suspected of some older undiagnosed relatives.
If you had one song that would tell us more about you or represent your life, which song would it be?
Nessum Dorma- Pavarotti. He says “VINCERO” at the end, which means, “I WILL CONQUER”. We loved music so much (which is why I made so many videos) so it depends on the mood. What Was I Made For? Mother of the Disappeared, The Boxer… So many!
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Please be loud, be out there, fight, donate, spread the word. It can happen to anyone. It ruins your life and destroys your family.