Page created by: Anne Smith

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HereUntilParkinsonsIsnt
A link to my MJFF fundraiser will always be on the bio info.

Mickey was born in Atlantic City, New Jersey to parents from North Philadelphia, who were working at The 500 Club. He was raised in Philadelphia, attended Cardinal Dougherty High School and joined the army when he was 17.
He met my mom in 1969 and they were married in 1970. He had two children (many more that he adopted or took in), worked at Campbell Soup while he attended St. Joseph's University on the VA Bill.
In 1999, he returned to New Jersey. He didn't want to go far so we still look at Philadelphia from the windows but we were much closer to a lot of his family since we were on this side of the bridge now.
He was a very simple man. He liked watching sports. He liked to golf. He absolutely loved taking long car trips. His whole life was about his family. He was a dedicated fundraiser to so many different causes. I remember once when he woke up from a coma, he was panicked because his VFW fees were late. He told me I needed to run home and get his checkbook. I told him I think they'll understand lol.
He was the guy that you called when you simply needed an ear. When you simply needed someone to give you advice that was about peace and kindness. He had really funny sayings. Sometimes I would complain about how I was treated at work and he would say, "whoa whoa You don't know what that other person is going through. How do you know they don't have a sick child at home? Why do you take these things personally"? He was always the person to bring me down to earth. He did this for everyone in his life. Fortunately for me, I was with him all the time.


After 5 years of misdiagnosis, constant doctor appointments and desperation knowing that something was changing with my dad, he was officially diagnosed on October 3, 2013. He had no tremor and he simply fell through the cracks due to a very rare genetic issue that he had in his neck. Most doctors suspected that was the case but a few did mention Parkinson's. I sat on the couch that day and Googled for information. That was the first day I visited the Michael J Fox Foundation website.

We were happy. Imagine saying that? That we were happy. We were happy because we had an answer. We had no idea the horror ahead.

2014 was a "good" year. Some people get many years of their "honeymoon period", my dad got a little less than a year. We were able to travel since he loved to drive all over.
However, that all ended in 2015. It was a constant string of Parkinson's related issues that had him in and out of the hospital.
It's the most helpless feeling in the world knowing that the person you love the most on the planet is struggling and there's nothing you can do about it.
2016 continued as 2015. Complications causing hospitalizations. I was no longer working, not in a good mindset because I did not realize that I wasn't taking care of myself. What good of a caretaker was I if I couldn't even take care of myself because of the constant worry. When you are the sole caretaker of someone who has Parkinson's, it can feel like you are constantly putting out fires. You don't have time to sit down and dive deep trying to educate yourself. You don't understand. You're confused. Imagine what it felt like for my dad 💔

On August 3, 2016, my dad said he wasn't feeling great. I thought he had a stomach bug. I took a bike ride while he slept. During the ride, our next door neighbor called and said that my dad was asking to go to the hospital. My dad had never asked to go to the hospital. He was in the hospital often but he certainly never asked to go. I wasn't far from home so I pedaled so hard to get home and there he was, putting some things together knowing that he needed to go to the hospital. I did not understand what was happening. I don't recall his exact words but he was basically saying he thought something was wrong. Again, I thought he had a little bug and just needed to sleep since sleep was very difficult for him.

When we got to the hospital, my head spun. You go to the ER and they do a triage and then you wait to see the That's not what happened on this day. They had me set off to the side while I watched about 15 doctors surrounding him frantically working on him. I didn't know what was going on. Someone ran over to me to ask for a signature for a blood transfusion. I just remember signing off on so many things while being told that he was the number one trauma and he needed to go to surgery immediately. We were at the number one trauma hospital in the state and I still didn't understand what was going on.
They took him away so fast. I remember running after him to get his eyeglasses and his medal from his neck. In a total state of confusion, shock and fear, I just remember telling him that I loved him and I would see him after the surgery.

After about 11 hours sitting in the trauma ICU waiting room for what I was told would be about a 2 to 4 hour surgery, I finally got up to ask for information.
A doctor came out and met me in the hallway. She kneeled down and told me that my dad wasn't doing good. They were doing all they could do but that they were giving him a 50% chance of making the night.

I only remember seeing the elevator as we were leaving since we had to go home at that point. It felt like someone smashed me over the head with a baseball bat. I simply had no clue how I was having a conversation with him earlier in the day and now I'm being told that he might not make the night.

I arrived back to the hospital about 6:00 the next morning. My dad was in trauma ICU recovery. Only one person was allowed in the room at a time. He had one nurse that sat there 24/7 and an aide behind him to make sure that none of his tubes or equipment had any issues.
He was in a coma. It wasn't even a room. It was just a tiny little offshoot from the regular surgical recovery area where they have a curtain so the nurse can set up her station right in front of his bed.
A few hours later, a team of doctors came. They explained that they didn't think he was going to make the night but that he came off the ventilator overnight. One really sweet doctor said to me in a whispered tone, "he's going to be fine". She was right. I knew my dad was going to be fine.
He spent the next 4 days or so in the TICU but rapidly stepped down to regular ICU then to Critical Care floor and was set to be released on August 14.
We had some fun when he was in Critical Care. He was back to his laughing self. He was a little upset that he had more facial hair than he did when he first went in but I could not use a razor to shave him. So I ran home and got his clippers and put the Eagles preseason game on for him while we got him back to Mickey. He wanted his cologne and his comfy sweatpants!

The hospital said that he needed to go to a rehab. My dad was adamant that he does not go back to a rehab again. We had too many terrible experiences in those short-term rehabs. He did need physical therapy and care but I knew that I could provide that at home. I went to a medical supply store and I set the house up like a home rehab. We had nurses hired to come in regularly.
I got a call from a doctor telling me that she didn't think it was a good idea that he came home. She said "you don't know the amount of work it takes to care for someone with Parkinson's". She was right. I was only doing the best I could but I was going to honor his wish to not have to go back to one of those horrible rehab places. He didn't even get his medicine when they made him go to those places.
I told her that he wasn't going. My dad was very happy and once he got home, he was an absolute delight. He was a little weak of course but we had a great doctor's appointment on August 18th. His doctor said he was happy that he had come home. That he looked good and that when he saw him in October, he would be a new man.

About 9:30 on August 19th, my dad stood up to walk. He put his hand on his little dresser and said he needed to catch his breath. That was the last thing he ever said. He collapsed and died. His eyes died right in front of me.

So after 8 years of suffering, he died extremely sudden of an embolism. That's the way it ended for him. Listening to me screaming and screaming because his eyes were simply dying in front of me (something that kills me to this day because that would have been the worst thing for him to hear). He was looking at me but I don't think he saw me. I just knew he was gone. It was that quick.

The medics came and worked on him for about an hour. But I knew he was gone. I just kept asking them to please tell me the truth because I knew. He was gone. I saw his eyes die. They took him to the hospital where he was pronounced at 10:34

Everyone has a different story. Mickey simply fell through the cracks. He didn't have telltale signs of Parkinson's in those first few years. Then the rare genetic condition was thought to be the cause. He suffered. He suffered only to die so suddenly on a night that we had so much hope. We were scheduled to meet his new neurologists the following Wednesday. It was a smaller practice that had only movement disorder specialists and his primary care doctor wanted him to be seen by them. We were so hopeful. But in the blink of an eye, he was gone.

On paper, my dad was as healthy as you could be. He was in his 60s, did not drink or smoke. His blood pressure, cholesterol, sugar and all other numbers were absolutely perfect. On paper, he was the picture of health.

I was in support groups for caregivers. I remain active in those groups. If I had someone tell me back then to be patient with some things and explain some things, maybe I would have understood more. One group called me the "poster child for caregiver burnout". But as a caregiver, especially to the person you love the most on the planet, your best friend and your father, you are not in the right frame of mind. You're constantly putting out fires and trying to absorb as much information as you can when each individual parkinsonism decides to mess with him at any given time.
I wound up in the hospital with an ulcer some months before my dad passed. The nurse recognized me and came into the room asking where my dad was. She was really confused as to why I was the patient and why he wasn't there. I explained to her that you need to get me out of here. I have to get back home to him. She told me that I wasn't taking care of myself and that I would be of absolutely no use to my dad unless I did take care of myself. That I was literally worrying myself sick. But she did get me out of there rather quickly. It was very fateful that I was admitted to her floor since that was a floor my dad was often admitted to and they knew us very well.
In addition to awareness and fundraising, caregivers need a lot of help. I wish I could go back and do so many things differently. I wish there was someone who lived it the same way that could give me advice. I did get wonderful advice but mostly about medicine. Everyone's situation is different. I will always chime in when I see that someone is experiencing something identical to what I feel as though I messed up.

I do remember time wondering how did he even get this? It turns out that he was exposed to Agent Orange in a place that the VA considers one of the worst areas. He served in that area for 1.5 years. We also know that this could be genetic in addition to environmental factors.
Will we ever get an answer for him? Probably not.
But I do think we are on the brink of getting answers for over a million families in the United States and the millions of families around the world that live the way we did for 8 years.
So much has changed since August 19, 2016.
Unfortunately, my dad is not here to take advantage of those amazing changes.

My dad was a fundraiser. He spent his life helping others. I don't do this because I think this is what he would want me to do. I do this because it's in my blood and I know that this is what I have to do.
As someone who lived this nightmare for 8 years, I have to be out there. I have to be part of this army of warriors to put an end to this thing. This disease cannot continue breaking hearts and destroying families.
There are too many people that have lived the nightmare still here today that will fight until the end.

Mickey, you never complained. You told everyone you were fine. But you were scared. You said you were not afraid to die because you had a good life. You were afraid of what happen to me if you did die.
You suffered yet you didn't complain once. You are an absolute hero. Your funeral was the perfect example of that. People were walking up to your casket telling me that they had driven from faraway states because you had helped them with something in 1985. Stories like that. The line of people to pay their respects went all the way out to the street. Your casket was at the front of the church that has the longest aisle in the Archdiocese of Philadelphia. Your funeral itself was a testament to who you were and how you lived.

Of course I miss your daily advice about peace, kindness and compassion. Sometimes I don't know how I get through without you guiding me on how to be my best self. When I cleaned out your office, I did find all of your books on how to be the best person you can be. I don't understand why you had those books when everyone knew that you were the best person out there. Those are books that you should have been writing. It was just who you were.

They say if you plant apples, you get apples. It was in my dad's heart to help people and after the experience dealing with this horrible disease with no answers, it's in my heart to do anything I can possibly do to help end this for good.