An interview with Anne Smith: Together…. Anne and her Dad’s Journey
Biography
I am born and raised in Philadelphia and have lived in New Jersey since 1999. My father was born in New Jersey but grew up in Philadelphia, where my mom was also born and raised. I was beginning an amazing new career path, awarded a scholarship to Embry-Riddle Aeronautical University and shooting up the ladder when I noticed something “wasn’t right” with my dad. He was my best friend in life. It was just little things, but I noticed. He was not diagnosed properly for 5 years. No tremor, no “telltale” signs.
Can you tell me more about your Advocacy?
My advocacy is simply fundraising and awareness. When the doctor told my father he had Parkinson’s Disease, we were actually HAPPY. We had no answers but clearly knew nothing about Parkinson’s. His childhood friend, a retired nurse, called that night as I was Googling this disease. Excitedly, I told her we finally had an answer. She was silent. She said,” oh… I was hoping it was cancer… at least he’d have a chance” in a very somber tone. People need to be aware so when this disease decides to strike, you aren’t “happy” and can reach out to find the proper resources.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
When this unknown disease took my best friend, my father, from me. I realize Parkinson’s is what the doctor always said. “You won’t die from it but you will die with it”. However, my dad had a lot of Parkinson’s related issues. One resulted in an emergency surgery, and he did pass due to an embolism from that surgery 16 days later. It took my dad- he was my entire world.
What type of goals do individuals with Parkinson’s have when seeing your Advocacy?
That there is a group of people out there like me that had their life ruined by this disease and we ARE out there fighting. We’re never going to stop.
What type of training and how long are the programs?
I have no medical background. I’ve only participated in caregiving seminars.
What effect can your Advocacy have on an individual with Parkinson’s?
Ideally, to find a cure. To be more aggressive and cohesive. To fight just as hard as other groups. 1.2 million American families deal with this disease. We HAVE to fight through fundraising. We’ve seen what fundraising can do and in the nine years since I’ve lost my dad, many strides have been made.
What would you like to see as a future goal for your Advocacy?
For the proper funds to be raised to help us in this fight. We NEED them. If a million people donate $1, it HELPS. Spreading the word that even a $5 donation can go a long way. Things have happened due to this fundraising. Many things are available today that were not an option for my dad but are today in just 9 years. For a disease that has been named and known about since the 1800s, why are we so slow to find a cure??
What events do you participate in?
Almost all Michael J. Fox Foundation events, political forums as spectators, maintaining social media awareness accounts. My uncle is Dr. Robert Ruff, who was the head of neurology for the VA nationally. He is retired but along with my aunt (a psychiatrist who works with PD patients, we read the studies and discuss wording for my letters to politicians. Any new news- it’s treated like the puzzle that it is.
How does this also assist the caregivers?
I tread lightly with caregivers. As the sole caretaker of my dad for years and now a part-time caregiver to my uncle, who is 3,000 miles away, I certainly know the difficulties. I was often called, “the poster child for caregiver burnout”. I can look back and reflect on my regrets and triumphs. As a long-time caregiver, I can assist by telling them to care with love and to care for themselves or there will be no one to care for their loved ones. It’s easier said than done though. Often, caregivers neglect their own health and mental well-being. I certainly did but I have no regrets. I did experience the fallout after losing my dad so suddenly.
How can someone get in touch? What is your website?
Instagram and TikTok- hereuntilparkinsonsisnt
Facebook: Anne Smith but good luck finding me since I’m a “Smith” 😊
How can others also become advocates for awareness?
Social media, talking about it. Come to an event just to see this vicious disease that could strike you or your family at any time.
In your opinion, what is the key to effective advocacy?
Never give up. Being persistent. If a politician or someone who can use their influence to help ignores you, you keep fighting. If your friends hate that you post your fundraiser every year, realize that it might not be your friend. Surround yourself with people who share the same goal- the erase of this disease from the planet.
How can we better fundraise to support a cure for Parkinson’s?
We must stop being afraid to “ask for money”. Yes, it stinks “asking for money”. However, if awareness is out there, people may donate $5, which I’m ALWAYS grateful for. I’m grateful for every penny. It seems, for the most part, it’s only those who are also affected or who loved the person you fundraise in honor of are the ones donating. If people were aware, they may realize this can happen to them and support with just a few dollars.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
The only activities I participate in regarding this is monitoring caregiving and patient groups and social media to make sure the scammers promising a cure are detected. There are some awful people out there who prey on those who participate in alternative remedies. Alternative remedies help many people but there are too many awful people who know that people with a neurological disease may fall for a scam promise. It happened to my dad.
Why should people who don’t have Parkinson’s care about this?
It can show up at ANYONE’S door. I remember a doctor who said, “it typically affects older Caucasian men”. Really? Go to a Parkinson’s event and see the people living with it with your own eyes. Men and women of all ages and ethnicities! It CAN show up at your door and if we don’t know how or why… people NEED to care.
Have you had any family members or relatives affected by Parkinson’s disease?
Yes, my uncle currently battles it, and we suspect older relatives likely had it but passed from other issues.
If you had one song that would tell us more about you or represent your life, which song would it be?
My life? O Mio Babbino Caro (Oh my dear daddy) by Kiri te Kanawa- one of his favorite songs anyway and represents our shared love of opera. We saw her sing it together before he was sick.
My dad’s life? The Boxer by Simone and Garfunkel. He loved the song, but he fought like a boxer. He never once complained.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
We are NOT going away.
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TogetherForSharon® In memory of my mother, Sharon to voice awareness & hope for a Parkinson’s Disease cure. Sharon’s Son, George
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