How To Fight An Incurable Degenerative Disease: A Battle Plan

 

 

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.

 

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.

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!

With gratitude,

 John 

Parkinson’s Disease and the Holidays

Intro:

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! 

 

 

I am John Andrejack.

This is a message of Hope.

The Four Things Our Mother Taught Us

 Jean Andrejack. May 20, 1936 – December 14, 2023

Author’s Note: 

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.” 

 END 

Thank you for reading.

Lacking the Motivation to Write, My PD GENEration Results, a New Biomarker for Parkinson’s Disease, the FDA Snubs AbbVie, and Parkinson’s Disease is Mostly a Man-Made Condition!

 

 

Lacking Motivation

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.

You can read more about PD GENEration here.

 

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.

 

FDA Snubs AbbVie

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.

 

Ocean Taking Pics Of Northern Lights

 

 

 

Long Time No Post, Clinical Study Updates, Gratitude and the Holidays

 

Subcutaneous Levodopa/Carbidopa Pump Study Extended!

 

As you may know, for the last two years I have been involved in a study in which I am receiving my carbidopa/levodopa subcutaneously (under the skin) via a pump. This is similar to the pumps used to treat diabetes. The results have been miraculous. My dyskinesias and tremor have almost completely gone away, and I am no longer dragging my right foot when I walk. My off periods (times in which the medication is not working) have gone from 8 hours per day to 1! Unfortunately, it does not seem to help with fatigue. Chronic fatigue is one of those things that you can only understand if you have it.

 

The thought of going back to the way I was before using the pump is unfathomable. People ask me questions like, “What will you do if it is not approved by the FDA?” or “What if it is approved but not covered by your insurance?”  I shrug off these questions and smile. While I am not living in denial, one thing I have learned from the Parkinson’s community is that you live for today. From time to time, I wake up thinking about it and then, my mind is full of dread. This is when that little voice inside my head asks, “Can you do anything about this?” Of course, the answer is no. The next thing the little voice asks is, “What can you control?” So, I get up and go to work. The voice inside my head often adds, “And be grateful for today.” He can be a real smug asshole, but he is correct. Author's note: “Microsoft Word just notified me that the word “asshole” may be offensive to some readers.” The little voice inside my head responded and told Microsoft Word to “Fuck Off!”

Fortunately, the clinical study site coordinator called and informed me that the open label phase has been extended until the treatment is approved by the FDA! I am grateful for this news and as Michael J. Fox says, “Gratitude makes optimism sustainable.”

 

Pinched Nerve

Starting in late August, I have had great difficulty walking due to pain that starts in my hip and radiates down the side of my leg. Two sets of Xrays, 2 MRIs a steroid injection and over $500 in copay later, I was diagnosed with a pinched nerve. On December 16, I will undergo a IR Epidural Transforaminal Nerve Root Block. Hopefully, this will relieve some of the pain.

 

The Holidays

Like many other people, during the holidays, I take an inventory of people and things that I am grateful for. This year, I am grateful to have such wonderful friends, family members and colleagues. My son, Ocean and wife Kate are constant source of support.

I am also grateful for my sobriety. October 31, 2022 was the 25th anniversary of my sobriety.  I will always remember my last weekend of drinking and making the decision that it would be my last. I find that when I look back on the things I have done, there are very few that I accomplished on my own own. My sobriety is no exception. Recently, I remembered that I did not walk away from alcohol all on my own. The fact is that my friend Ginger came to visit and somehow managed to convince me to quit. It was when I saw her in a taxi, pulling away from the curb that I decided to quit. Ginger, I know that it is 25 years too late, but thank you and I am sorry. I am grateful for our friendship.

Dear Reader, (homage to S.K.) thank you for making it to the end of this post, but I think that this is a good place to end it. It would be great if you could leave some comments below. The only comments I ever get are from scam artists selling miracle cures.

 I wish you and your family a happy and safe holiday season.