On August 8, I had DBS surgery and then in a separate operation on the August 11 the
battery went in. August 22 was the first programming session. For some, DBS
surgery is an overnight miracle. For others,
it can take up to 6 months to get the programming down. Unfortunately, I fall
into the latter category. Four programming sessions later, I can happily attest to the fact
that that we are making progress. I am walking better, have more energy and
have cut my medication by 75%!
Yesterday, I got through the day until 10pm without an
issue. I came in from walking the dog last night with my right foot turning out
(dystonia). I announced that. The fickle gods from Mount O”limp” us had ignored
me all day because Dionysus, who was supposed to watch me, was drunk and forgot.
Ares said, “Hey what about Andrejack? Who is making certain he suffers?”
Dionysus said, “Shit I forgot about him!” Ares declared war and Zeus smite me
and brought back my limp.
My wife declared that the opposite was true. The gods had
carried me throughout the day and by 10pm, they got tired and fell asleep on
the job! I admitted that her view was much more positive but insisted that mine
was funnier. Not bad for 2 atheists!
Tips from the Trenches
Prior DBS surgery there one day in which you cannot take
medication. The team needs observe you without medication to give you an
estimated of how much progress you can make. This can be brutal. I had to turn
off the pump the night before. My wife, being a smart woman, reserved a hotel
room near my doctor’s office. This was a good thing because I had to get from
the hotel room to the car and from the car to the doctor’s office in wheelchair!
We made the same arrangement for the day prior to surgery. Waking up 15 minutes
from the hospital was far better than taking a 1-hour trip to long Island with
no Parkinson’s medication in my system. If you can afford this little luxury, I
highly recommend it.
The Worst Part
When they told me that I would spend the night in the
hospital, I assumed that I would wake up in a hospital room. I obviously knew
nothing about the cost-saving approaches to modern medicine. I woke up in the Post-Anesthesia
Care Unit (PACU), also known as a the recovery room. In the “PACK YOU”
you are packed in with dozens of other patients. Your only privacy is a curtain
wall. During the time I spent in the PACU there was a full staff meeting and a
birthday party! As you can, probably guess, I did not get much rest. Except for
one nurse who seemed to have the goal of making my life miserable, the rest of
the staff was wonderful.
You are probably thinking that if that if was the worst part
of DSB surgery, it was not too bad. If you are thinking of this, you would be
correct. I was in zero pain and did not even use aspirin or Tylenol during my
recovery. I found that recovering from back surgery was far worse.
I am looking forward to my November 7 programming
appointment.
I will be speaking on a panel for work life balance at this
event this Sunday, October 26 at The Marlene Meyerson JCC Manhattan 334
Amsterdam Avenue at W 76th Street New York, NY 10023. It is a free event, and
lunch will be served. You may also attend virtually. For more information and
to register click here. Please
come up and say hello if you do attend.
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 from the Parkinson’s Disease Foundation and 10 years later, they are both still nominating me for
opportunities to represent People with Parkinson’s Disease (PWP).
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.
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.
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!
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.
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.
The Lynch Bunch (William you’ll be in the next one!)
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!
