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| Treadwell, NY |
Prologue
For two weeks, I had been worried nonstop about just one thing.
It was July 24, 2015. Dr Jori Fliesher had already spent 90 minutes helping me reach the conclusion that I had Parkinson’s Disease. No one could have done a better job of delivering this news. After 10 years of not knowing what was wrong, her expert analysis brought clarity. But the diagnosis isn’t what I was worried sick about. I barely heard her explanations confirming what the last neurologist had mentioned with flippant insensitivity.
I waited politely but anxiously until she asked, “Any questio…?”
“YES! What about my SON?”
That’s the thought that had plagued me.
“Since you have no family history, his chances of getting Parkinson’s disease are the same as anyone else’s: 1 in 100.”
My shoulders dropped. I sank into the chair. The tears welled up with relief. I couldn’t stop crying and had to leave her office for a few minutes to pull myself together so that I could finish the appointment. Thankfully, PD GENEration testing later proved that I don’t have a genetic form of the disease.
Jori introduced me to Karlin Schroeder and the Parkinson’s Disease Community. 10 years later, she’s still nominating me for opportunities to represent People with Parkinson’s Disease (PWP). Thanks Jori!
Introduction
How do you win a battle against an incurable, progressive, degenerative illness?
● accept that hope is an action,
● build a supportive team,
● learn to ask for and accept help,
● summon your courage,
● live your life, and
● develop a gratitude practice.
Repeat to yourself, “I have the courage to win this fight, and I will not let fear stop me.”
I believe that hope is having a plan and the determination to see it through. You are the captain of your team. Be confident in the fact that you are the expert on your own body and that People with Parkinson’s disease (PWP) are often the best source for information on this condition. Learn to know when you need help, how to ask for it, accept it, and offer it to others. Live in the present moment, enjoy your life despite the disease, and be grateful for all the wonderful people around you.
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| Jonatha, Me, Mary and Tiffany |
Believe That Hope Is An Action!
Soon after being diagnosed with Parkinson’s disease, my wife recommended that I read “Daring Greatly: How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent, and Lead” by Brené Brown. In the book, Brené references C.R. Snyder’s Hope Theory. I was inspired to read “The Psychology of Hope: You Can Get There From Here.” According to this theory, hope is agency plus pathways used to achieve a goal. A simpler way to look at it is: Hope is willpower and waypower combined to reach a goal. I have boiled it down to, “hope is having a plan and the determination to see it through.” Since then, I’ve created and delivered several dynamic presentations on hope for academic audiences.
The more published research on hope I read, the more I realized that most people have willpower and determination, but they fail due to a faulty plan. With Parkinson’s disease, treatment plans often change as the condition progresses. I’ve heard many PWP say, “something works until it doesn’t.” Mirapex, a dopamine agonist, worked great for me for over a year. Then I realized that if I didn’t get off that medication the side effects (impulse control) could destroy my life. I pivoted, changed the plan. I started taking carbidopa/levodopa, and for 5 years, this medication was the patch that helped to hold my life together. Soon my dyskinesias were so bad that I was shaking my head “no” every waking hour of the day.
By March of 2019, my medication was only working 8 of the 16 hours I was awake. (The time when medication isn’t working is referred to as “off time” or “motor fluctuations.”) I had no idea what to do. I tried extenders, off-label medication, and anything else that I heard or read might help.
I was afraid that if I didn’t do something, I would not be able to return to work after COVID. (It’s okay to be scared)
I decided my next plan was to get into a clinical study, and was eventually accepted into one for the Vyalev Pump. The pump worked like a miracle for 3 years and is still working great, but the disease has progressed beyond the point where the pump alone can help me. I’m grateful to all the people at abbvie who worked on the pump. I’ve had the opportunity to travel to their headquarters in Chicago twice and thank many of them in person. My mother Jane Andrejack, who taught me the value of gratitude, would have liked that very much.
After 10 years of battling Parkinson’s disease, I learned that when fighting a progressive degenerative illness, you must have determination and the ability to pivot. My latest plan is Deep Brain Stimulation surgery which is now scheduled for August 6.
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| Max, Andrea, Ocean, Walter, and Kate |
Assemble Your Team
Part of your plan is to assemble a team to support you in your fight. A Movement Disorder Specialist (like Jori) is one necessary member of this team, but so are family, friends, colleagues, therapists, and members of the Parkinson’s disease community.
People are not going to think of themselves as part of your team (unless you have meetings and t-shirts!) You may not even think of your family and friends as part of your team (I certainly didn’t). If you’re lucky, one day you’ll step back and realize that your family and friends have constructed a safety net to support you.
Get a Movement Disorder Specialist who you can trust and who is honest with you. If you have a partner, let them know what they are in for and get them on board. Make certain to have a therapist as a team member. You’ll talk with friends, family members and colleagues, and soon learn who’s on your team and who isn't. We’re all busy with our own issues, so just because someone isn’t on the team doesn’t mean they’re not part of your life.
If you want to keep someone on your team, don't overload them. Remember to give your partner a break. Encourage them to go away without you for a weekend. I don’t like to think of myself as someone you would need a break from, but to be honest, I’m a lot to deal with. Nervous talking, obsessing about the perfect way to do X for months only to later abandon the project forever. Long before I had Parkinson’s disease, people I love sometimes needed a break from me!
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| Me, Kate, and Ocean |
Accept Help and Give Help To Others
Having the best team means nothing unless you can ask for and accept help. This can be more challenging than you think. Take a deep breath, take a nap, and prepare to be vulnerable.
Practice saying, “I need help with…”
Ask for what you need when you need it. People who thought there was nothing they could do will soon realize that they can help, even if they can’t find a cure for Parkinson's disease. People who care about you want to help you. When you ask them for things they can actually do, they will step up. All these small things will add up, until your life feels a bit less impossible.
You may also learn that helping others makes YOU feel better. You can volunteer for the Michael J Fox Foundation and/or the Parkinson’s Foundation. There are many ways to help. I quickly realized that fundraising was not my forte. I do not know any wealthy people and I am not comfortable asking people to donate money. Instead, I became a Patient Advocate In Research (PAIR) for the Parkinson’s disease foundation. I sit on patient panels to advise pharmaceutical companies on clinical study design, product rollout, and advertising. One thing you can do as an advocate is to just be who you are out in the open. Post your experiences (both good and bad) on social media. This will let members of the community know that they’re not alone. It will give them strength. It may help you feel better too.
Some tips on helping: Don’t ask “Can I help you?” People take this as a social nicety and will most likely answer, “No.” Instead ask someone who needs help, “How can I help?” This implies you will help if the person in question tells you what they need.
My friend Erica decided that I needed to get out of the house and go swing dancing. She kept asking until I agreed. This was a tremendous help because isolation speeds the progression of the disease, and she got me out of the goddamn house!
If you have a family member who is constantly calling, texting and bringing you newspaper clippings, try not to get upset with them. This is their love language. They feel powerless and it makes them feel better to do this, so let them. Instead of getting annoyed, let it serve as a reminder to you that when you have an incurable degenerative illness you are not suffering alone.
Conversely, if you know someone with Parkinson’s disease, you don’t need to save every article and call or text them every time you read or hear a story about Parkinson’s disease. Trust me, they already know about Rock Steady Boxing.
My family at Dahill Gardens is amazing. Lauren, David and Mylene are always there to bring up our packages, water the plants, and pick up something from the store. I am very grateful that David always helps me put in and take out our AC units. If these are things you can do, then you can help someone with Parkinson’s disease.
Our society takes caregivers for granted. We impose upon caregivers the impossible expectation that they will take care of their loved ones, regardless of how ill they are, without any appreciation or support.
ATTENTION: If you have a friend or family member who is a caregiver, focus on them. Take them out to dinner and do things one-on-one with them. Buy them gift certificates to a spa. This is the best thing you can do to help
Summon Your Courage
You’re going to be frightened. It’s never a good sign when someone with Parkinson’s disease tells you they’re not worried. This may mean their judgment has been compromised. When someone is so distracted by pain, the inability to walk, muscle tightness, tremors, and/or dyskinesias that they are temporarily incapable of making good decisions.
Recently, I underwent two days of testing to prepare for Deep Brain Stimulation surgery. I knew it was going to be difficult, but still pretended that everything would be okay. I didn’t take any days off work before or after the testing. My judgment was compromised. I was a complete mess. I only made it through those two days because of my wife Kate. I took a step back, realized how wrong I was, and made the necessary adjustments.
To be honest, I’m often terrified.
The trick is to get up every morning and keep going. The hardest part of my day is the three minutes that I lie in bed before putting my feet on the floor. I do not always accomplish a great deal, but for the last 10 years, I’ve always managed to get my feet on the floor. This is a victory.
Every few days for about 90 minutes, I’m convinced that everything is falling apart and I can’t go on. I play sad music and cry. I curse a god I do not believe in, and feel sorry for myself. During this time, I talk to no one. I don’t make any plans. I don’t cancel any plans. Soon, I realize that I can go on, and that I’m not in this alone.
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| Ocean Flying a Kite For The First Time! |
Live Your Life
For many days after receiving my diagnosis, I was miserable. Parkinson’s disease was all I could think about. Then I witnessed our son Ocean and his friend Max flying kites for the first time. I looked at the expressions on their faces. I was there at that moment, and there was no Parkinson’s disease. For about 30 minutes, I was healed. Since that day, I have looked for and found these moments without Parkinson’s disease. They happen when I watch my son surf, or when I see him discovering a new passion and pursuing it. These moments occur when my wife plans a successful retreat or gives a great presentation. They occur when I’m helping someone else and not thinking about myself.
Regardless of whether you’re sick or healthy, your children and grandchildren will graduate from kindergarten, middle school, high school, and college. Be there if you can. Try to find something special in each moment. You will never lose the battle against any disease as long as you keep living your life and appreciate all the wonderful things that are happening in every moment.
Gratitude. THANK YOU!
My mother Jane was grateful for everything anyone ever did for her, and she told everyone about it. Michael J Fox said, “with gratitude, optimism is sustainable” and I’ve found this to be 100% correct.
Take a few moments to focus on people who are helping you and things that are going well. Forget about people who hold you back or get in your way. Other people are the heroes of their own stories, not the nemesis in yours. Kate once suggested that if I say to myself, “We’re all just people, and we’re all doing the best that we can," I would be a much happier person. She was right, and I am.
Sometimes you get lucky. Celebrate and be grateful for luck. I was told by 2 prominent Movement Disorder Specialists that I could have been diagnosed in my early 30s, but my active lifestyle and healthy diet kept the disease at bay for over 10 years. I am grateful for those years.
I can’t think about what my life would be like without all my amazing friends and family members. I’m grateful for my wonderful wife Kate and our son Ocean who are always there for me no matter what.
I don’t know what I would do without my work family Tiffany, Mary and Jonatha. Thanks to Leslie who always listens to me and often serves as my editor.
My brother Paul and I have the kind of relationship only forged when someone stands beside you as you take on the world. I’m lucky for my sister Jean who is always visiting my dad and keeping me updated on what’s happening in his life. I am grateful that I never have to worry about my dad, (who worries about me too much) because my brother Rich lives with and cares for him.
Friends Sam, Ginger, Juan Carlos, and David are a great source of support. These four people serve as a reminder to me that you do not need to live close to someone to be close to someone.
My Movement Disorder Specialist, Dr Ritesh Ramdhani has put up with my bullshit for 7 years. He’s kind and generous with his time. He asks my opinion on the latest research and listens to me before making any treatment recommendations. Thank you, Dr. Ramdhani.
I’m lucky to have Sharon as a mother-in-law and friend. I refer to Diane and Andrea as the co- presidents of my fan club. It’s a very small club, but do NOT say anything bad about me in front of them. You have been warned!
I am very lucky to have my friend Walter and his son Max (Andrea’s family) in my life.
I’m so very grateful for the Lynch bunch to date they includes: Terry, Diane, Kate, Ocean, Justine, Sylvan, Alaia, Colleen, Grant, Iris, Bea, Caroline, Mike, William…
In return for all the support that I’ve been given, I offer my family and friends this gift, and I encourage you all to take full advantage of it: If something gets broken, if you are late anywhere, when you want to get out of social obligations, or you just need a scapegoat; you have my express permission to blame it on the guy with Parkinson’s disease! It can be invaluable if you use it.
Conclusion
I offer you this 6-part battle plan:
1) Believe that hope is an action
2) Assemble your team
3) Accept help and give help to others
4) Summon your courage
5) Live your life, and
6) be grateful.
It seems simple, but the best plans always are.
Ten years later, I’m still here.
I’ll never lose this fight, because I will continue to live my life despite having Parkinson’s disease. I have made this warning publicly before, but I find it necessary to repeat it now: If after I die anyone says something like, “after a long battle, John, lost his fight with Parkinson’s disease,” I will haunt your ass. Beyond that, I will go full poltergeist on you and wreck your place.
With more than just a little help from my friends, I will continue to live my life. I will fight and win this battle daily.
One day there will be a world without Parkinson’s disease.
I am John Andrejack
This is a message of hope, of love, and of gratitude.
Epilogue
VYALEV Pump From abbvie. I was involved in this clinical study for over 4 years. For more than 3 years, it was a miracle, and it still is. My Parkinson’s Disease has progressed to a point in which the pump just is not enough and that is why I am having DBS surgery. Recent testing indicates that the pump is controlling my symptoms 30% better than pills. While subdermal infusion will not work for everyone, I have come to believe that the stomach is a terrible delivery system for medication. I am grateful to everyone at abbvie who worked on this project as well as with the many people who I worked with at the clinical study site. Thank You.
There were so many people who helped me get through the last 10 years that I certain I left some people out. If this happened to you, please accept my apologies.
If I had the right words to thank you all, I would say something like the speech below. For now, please accept, “I’m leaning on you… I’m leaning on you…”
Peanut. We recently adopted a service animal! Thank you again Kate! Welcome to Brooklyn Peanut! We love you!
