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!
The holidays are an emotional time. Will Uncle Frank get drunk and talk for hours about
how great Trump is? Will Aunt Gertrude criticize everyone’s cooking?
Will cousin Cindy try to control everything? Is someone actually talking
notes on who did the most dishes? Will your older brother punch another
family member in the face, instantly bringing back all your childhood
trauma? (That last question was oddly specific!)
Now
throw Parkinson’s disease into the mix. People with Parkinson’s disease
(PWP) often suffer from depression, anxiety and other mental health conditions. This year at Thanksgiving, while saying what I was grateful for, I suddenly started to cry. (Sorry about that.) Please remember to be kind to yourself and others always.
Loved ones who haven't seen their PWP in a while may be surprised. You (or a loved one) may want to warn others in advance. One holiday, after COVID, as I walked from the car to their front door, I
saw my parents watching my progress from the window. When we got
inside, my parents both burst into tears. They were clearly not prepared
for how far my disease had progressed. I wish I had warned them in
advance.
If you are the person with Parkinson’s disease:
Tell your hosts in advance what you can and can't do and what you do and don't need. Help when you can, how you can.
Get ready to field questions about recent Parkinson’s disease-related news shows and articles.
Be prepared for several stories about Rock Steady Boxing and Deep Brain
Stimulation. Take a deep breath. People love you and they are trying to
connect with you. Your disease is painful and traumatic for them as
well. Many men have been raised to go from problem to solution in an
attempt to avoid dealing with emotions (I know I was). So be kind to
that uncle who brings newspaper articles. It's his love language. At the
same time, feel free to say, “I'd like to have a holiday where we don't talk about Parkinson’s disease.”
Children:
I can guarantee you that the children in
your family are smart, observant, empathetic people. Nothing gets past
them. Have a kid-friendly explanation of what Parkinson’s disease is,
and use it. Children have fantastic BS detectors. Don't lie to them.
If your loved one is the PWP:
In
many cases, at one point during the day your loved one may look
completely healthy, and then three hours later, the symptoms of
Parkinson’s disease are evident. This type of fluctuation (when the
medication does or doesn't work) happens often to people with
Parkinson’s disease. In general, it isn't something to be concerned
about. Regardless of what medication they are on, Parkinson’s disease is
still degenerative and incurable. They may find a new medication that
better controls their symptoms but in general, all of us with
Parkinson’s disease are going to get worse. I can’t tell you how to come
to terms with that, but if you have any ideas, please let me know.
It
isn't necessary to rush in and save PWP from every situation, but it's
okay to be concerned about your property. I haven’t fallen and destroyed
anyone’s priceless family heirlooms, yet, but I’ve chipped more than a
few dishes!
It's
great to stay up-to-date concerning recent developments on Parkinson’s
disease. This shows that you really care and that you're trying to help.
I suggest that you email the articles to your loved one after the
holidays.
Sometimes,
PWP rise to the occasion. Be open minded, they just might take part in
the annual family football match, or swing dance to a few songs at your
wedding!
I
recommend you don't ask your PWP if they're going to be okay. I will
save you some frustration; 90% of the time, if the PWP is being honest,
the answer is no. They may be happy and fulfilled people with a lot of
supportive friends and family. (I know that I am.) They are still
probably not going to be okay. Please keep in mind that It’s okay to not be okay.
As my wife often tells me, If you go into a situation thinking, “We're all just people and we're all doing our best,” the odds of successful holiday visits increase dramatically! She is a very smart woman!
As
always, I look forward to a world without Parkinson’s disease. It’s on
my Christmas list, I’ve been pretty good, and I remain hopeful.
I have no holiday advice on what to do about the vegans. You are on your own to solve that challenge!
The title of this blog is: “A Day In My Life With Parkinson’s Disease.” As you read the post below you may think, “what the hell does this have to do with Parkinson’s disease?” First and foremost, people with Parkinson’s disease, have friends and family members who die. Unlike some people without Parkinson’s disease, I have had challenges maintaining relationship with my parents as the disease progressed. Neither my mother nor my father drives and I can no longer drive 90 minutes to their home and return the same day. I have developed chronic fatigue, and this made maintaining a relationship with my parents, especially my mom as she was dying, more challenging. I could not provide the assistance that my brothers and sister so willingly offered to my parents. If you are wondering, “do you feel badly about this?” The answer is yes.
When you have Parkinson's disease, you have a good days and bad days, and the day of my mother’s funeral was a bad day. I was not certain that I would be able to stand at the podium for long enough to deliver the eulogy and yet somehow, I managed to do it.
Jean Andrejack. May 20, 1936 – December 14, 2023
One of my mother’s final wishes was to die in her own home. After 87 good years, my mother passed at home peacefully in her sleep. She lived a very good life. She had five siblings, many nieces and nephews, four children and one grandson. My father and mother were the greatest couple I ever knew, and they both hit the jackpot when they found each other. She also had her friends and her faith. When I was asked to do the eulogy, all I could think about were the four things that my mother taught us.
The Eulogy
On behalf of myself and my family, I thank you for coming here today to help us celebrate my mother’s life. I have had some time to reflect about all the things my mother taught us, and I came up with four categories.
1) There Is Always Room For One More (or 2, or 3, or 4).
A. My parents loved Christmas. One year, my mother gave my sister Jean the ugliest sweater that I have ever seen. This started an unusual holiday tradition.
Christmas 2012 With Ocean
B. On Christmas Eve, everyone was welcome. There were friends, girlfriends, ex-girlfriends who became friends, boyfriends, and friends of friends in our home. After midnight mass and more than a few margaritas, we always had “the sweater ceremony.” My brother Rich would appear from the basement surrounded by a cloud of suspicious smoke. Then one of us, usually my brother Paul, would go into the other room and return with a box. Paul would open the box, hold up the ugly sweater my mom gave Jean up and say, “ladies and gentlemen, I give you the sweater!” The house would fill with laughter. People who never saw it before, would say things like, “it’s worse than I ever could’ve imagined” or “Oh my God! I thought they were exaggerating!” Eventually the laughter would die down, and my mother would say, “I didn’t think it was that bad.” Then, the laughter would start all over again. This story illustrates two things about my mom, first she had a good sense of humor and didn’t mind being the butt of the joke (she played the straight man to my dad for almost 60 years), but more importantly, that she always made room for one more in our home.
C. She must have learned this from her parents because my Aunt Francie and Uncle Don are the same exact way.
D. The Little Cabin On Chapman’s Lake. In the summer, my Aunt Francie, Uncle Don, my cousins, Susie, Bobby, and Donald and my sister Jean, brother Rich and I (my brother, Paul was not born yet) would all stay in a tiny cabin on Chapman’s Lake in Pennsylvania. In addition, other friends and family members would often stay for an evening or a weekend.
When I saw the cabin as an adult, I wondered, “how did we manage to fit so many cousins and friends into such a small space and still always have room for one more?!”
My 8th Graduation
2) Importance Of Education
A. Education was very important to my mother. If you wanted to come and stay with us in the summer and swim in our pool, it was no problem. You just had to agree to work on math or English for an hour after lunch using one of the workbooks that my mother purchased for us.
B. Learn Your Own Way—How She Taught Me To Study. I had trouble concentrating, so she taught me that to learn something, you had to read it, write it and say it out loud. I would walk around our dining room table, muttering questions and answers to myself until I had everything memorized. Sometimes, a teacher would call home and tell my mother that I appeared to be talking to myself while taking a test. My mother would reply, “so, how are his grades?” I study the same way to this day.
3) Have An Attitude of Gratitude
A. My mother taught us to be grateful for every little thing that someone does for you and to tell everyone about it.
B. If someone tries to help but doesn’t succeed, be grateful for the effort
C. Gratitude makes it easy to forgive someone’s faults and more importantly, it makes it easy for others to forgive yours.
D. Think of how brilliant this is. How could you possibly stay angry at my mom when she was always saying such nice things about you?
E. She told us:
Every time the church delivered a pizza. (One Friday a month.)
Each time the Hollers delivered a pie or a tray of lasagna. They are truly a remarkable family, and my parents are lucky to have them as friends.
Towards the end she was grateful to my cousin Susie for bringing Uncle Don and Aunt Francie to see her one last time. She said, “it was a wonderful visit.”
Aliases
My Mom had many aliases such as Mom, Jane, Jean, Aunt Jeannie and Granny. The one she liked best, however, was the one my dad called her for almost 60 years, “My Bride.”
4) The Most Important Lesson She Taught Us Was How To Love.
When I think of famous couples, I think of Bogart and Bacall, Johnny and June Cash, and most recently, Oprah and Stedman. I can assure you that none of these famous couples could compare to my mom and dad. Of all the things my parents did well, loving each other was what they did best.
As the story goes, my father met my mother at my Aunt Francie and Uncle Don’s wedding. My mother told me that my father kept cutting in even though she was dancing with a rather large gentleman who was getting very angry. She said, “your dad didn't care, he kept cutting in.”
She told me that on one of their dates, my father handed her a single rose, and when he let go of the rose, the engagement ring slid down the stem into her hand. (Looking At Dad.) Nice move dad!
Here was my mom’s simple recipe for being a good couple:
A. Accept each other’s quirks and faults
B. Never go to bed angry
They were tough act to follow, they didn’t make it easy, no one could live up to that.
Looking Up Talking To Mom:“So mom, how did I do?” (Pause.)“I know, I know it was a little bit long, but I am grateful for all you taught us, and I will tell everyone about it.” (Looking At The Audience.) She said, “you just did.” She is doing this (Demonstrate Counting On Your Fingers). That is what she did when my father told the same story over and over again! “Mom, there will always be room for one more in our home and I love you.” (Looking Up) “Look mom, I gotta go.” (Looking At The Audience.) She said, “come again when you can stay a while.”
Between working full-time, having Parkinson’s disease, being
a father, and recovering from spinal surgery, I have been lacking the motivation
to write. Since January, I have tried several times to put a up a new post on
this blog. Every attempt was deleted. I blame a great deal of this on the
fatigue caused by Parkinson’s disease. This fatigue was made worse by a pinched
nerve which led to spinal surgery. Essentially, they had to clear out a space in
my spine so that the nerve would no longer be pinched. In addition, they fused
my L4 and L5, which means my spine is now held together with a bar and screws. I
spent 2 nights in the hospital and 3 weeks recovering from home. I was not
cleared to drive and therefore, I spent an additional 3 weeks working from
home. For the majority of the first 3 weeks, I was in far in much pain to
accomplish anything. The good news is that the surgery was a success, and it is
no longer painful for me to walk!
Kate & Ocean On A Dogsled
Prior to surgery, my family and I spent a week in Norway and
even though I could barely walk, it was a wonderful trip. Thank God my wife
insisted that I purchase one of those canes with an attached seat. Carrying it around
made me feel like a senior citizen, but it was a lifesaver. We saw the northern
lights, went on a dog sled ride, visited the Sami people and fed their
reindeer.
Northern Lights
PD Generation: Mapping the Future of Parkinson’s Disease
This is a national initiative that provides free in-depth
genetic testing and counseling to 7,500 participants and creates a database
with extensive information on Parkinson’s disease. To date, roughly 50% of the participants
needed for the study have been tested.
This study tests for all 7 known genetic mutations. After
completing the testing, I am happy to report that based on current knowledge of
gene mutation, I do not have a generic form of Parkinson’s disease! While
living with PD certainly is not easy, at least I know that I will not pass this
disease on to my son!
A New Bio Marker for Parkinson’s Disease
Research by the Michael J. Fox Foundation has led to identifying
a biomarker for Parkinson’s disease. Spinal fluid can now identify people with
the misfolding alpha-synuclein which often leads to Parkinson’s disease. Right now,
this is a simple positive or negative test but hopefully, someday soon, the
testing will be a bit more advanced. Early detection will help with research, treatment,
and hopefully someday, finding a cure.
As most of you already know, for the last 3 years, I have
been involved in a clinical study in which I receive my Parkinson’s medication
through a pump. While this is not a cure, it has dramatically reduced my
symptoms and improved my quality of life. My dyskinesias have gone away and my
off time, periods in which the medication is not working, has been reduced from
8 hours a day to 30 minutes! My tremors have been reduced and my gait has also
improved. While the FDA has found no problems with the safety or efficacy of
the medication, they have some questions about the pump itself. Hopefully, this
will just be a short delay and soon many other people with Parkinson’s disease
will receive the benefits of this treatment.
Parkinson’s Disease Now Believed to Be Mostly Man-Made!
Research indicates that only 15% of people with Parkinson’s
disease have a generic form of the condition. Exposure to chemicals like TCE
and paraquat is what is mostly causing Parkinson’s disease! Exposure to TCE, a chemical used
as a degreaser in manufacturing and a spot cleaner used in dry cleaning,
increases your chances of getting Parkinson’s disease by over 500%! Exposure to
paraquat, an herbicide, increases your chances of getting Parkinson’s disease
by over 150%! Furthermore, paraquat is illegal to use in the UK where it is produced
but is still legal for use in the United States! Parkinson’s disease is the
fastest growing brain condition and by making the use of TCE and paraquat illegal,
we can greatly reduce the number of people diagnosed with this condition and
save billions of dollars in healthcare costs! What can you do? First, avoid drinking
well water which can contain TCE and/or paraquat. Second, avoid using dry
cleaners which use TCE. More to come…
Conclusion
Well, there it is short and sweet! It is not my best post,
but as they say, “perfect is the enemy of done!” Thank you for reading.
