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.

Another Year Above Ground: John’s Extremely Dull Holiday Letter

 

Dear Friends and Family:

 

Introduction:

Well things have gone this year. Another year has almost passed by without me seeing my friends or family very much. I think that I contributed to a published article and was interviewed by an online magazine or two. Of course, all these mediocre accomplishments were related to the fact that I still have Parkinson’s disease. Medical science is moving forward and this year, two new drugs designed to slow or stop the progression of the disease failed and will never make it to market. Keeping my fingers crossed that 2022 will provide several opportunities for many new drugs to fail.

 

 

 

Career Achievements:

I have been working in the same position for about 3 years now without much hope of advancement or any real increase in pay. I am still in the “middle management” category of higher education. In August, I started working on campus 3 days a week. Since then, two students stopped by my office to complain about stuff, and I attended four in-person meetings and a retirement gathering. Due to my involvement in a clinical study, I may be able to achieve my ultimate career goal of working another 5 years and then retiring!

 

The Day-to-Day Stuff:

I managed to save a bunch of money on dry cleaning and our pre-owned Honda Civic is still running. I went to the dentist twice and I am considering having an orthodontist give me an estimate on getting my teeth straightened. 

 

With April @ Green-Wood Cemetery

 

Cindy's Holiday Card

 

Exciting News About Friends and Family:

I was happy to receive Cindy’s holiday card, which was only mildly offensive this year, so my family allowed me to hang it up. (This is an inside joke. Each and everyone of Cindy’s holiday cards have been displayed in our home. If you ever received a holiday card from Cindy, you would understand.) I went to Point Pleasant NJ three times to see my parents and siblings. I am grateful to report that none of us were hospitalized this year, other than my older brother’s "cardiac event". Word to the wise; eating nothing but hotdogs is not a diet recommended by the American Medical Association. I ran into Sara Jane Sloves when taking my son to Ample Hills and we spoke for about 5 minutes. Recently, while taking a walk in Green-Wood Cemetery, I bumped into April Palmieri. Neither of us were there to attend a burial. A friend of hers, whose name I will never remember, took some pictures and I posted  one here. I also managed to eat lunch with Sam Sloves twice and have photographic evidence of one of those occasions!

 

Lunch With Sam

 

 

Conclusion: 

I am still hanging in there, which beats the alternative. I wish all of you and your families an uneventful holiday season and a drama-free 2022!

A Clinical Study Story

 

A note from the blogger:

While I should have publish this post in July, a shorter version (and probably a better one), was published on the Parkinson's Foundation website. You may be thinking, "Hey, did he just tell me not to read this post?" The short answer is no. The longer answer is, if you already read the article on the Parkinsons Foundation website and you would like to take a deeper dive, please read the blog post below.

Prologue:

Kate’s family has a weekend place in Treadwell NY, near Oneonta. It is off a dirt road on 16 acres of land with a private pond for swimming. The entire family calls it the “Country House.” If you stay for more than 3 days, the world seems to slow down, and if you let it, a wonderful sense of calm will overtake you.

 

When in Treadwell, Ocean and I often throw rocks in the stream and make wishes. The word most often used to describe Ocean is “kind.” That shows in wishes he makes. He has, on a few occasions told other wishers to “think bigger.” in the Fall of 2019, we were at the stream and Ocean lobbed in a stone and said, “I hope that my cousins and I always come to the Country House.” I tossed in a stone and said, “May our family stay healthy and happy.” Ocean picked up 2 big handfuls of rocks, tossed them in the stream, and wished for, “A cure for Parkinson’s disease.”

 

Ocean In Treadwell Editing One Of His Horror Films

 

 

Introduction:

It’s been a while since I last published a post. I have been in a clinical study which has taken up the majority of what little free time that I have. I have also been working on a short video based on my experience with the working title: “This Is What Hope Looks Like.” I recorded a video each time I had a clinical study visit. My plan is to edit these short clips together and maybe add some videos of doctors and researchers talking about Parkinson’s disease and the importance of advocating for additional research and taking part in clinical studies.

 

Timeline:

• February 5, notified of selection for clinical trial
• February 11, first clinical trial study site visit
• May 6, I am finally randomized and received the pump with either the medication or a placebo
• June 4, after almost one month of wearing the pump, things change for the better
• June 28, most recent study site visit
• Week of July 26, last visit for the phase III double blind study and first site visit for the open label phase

 

The Waiting Is The Hardest Part…

The first thing that you will probably notice from the timeline above is that it took almost 4 months between my first site visit and receiving the medication or placebo. This is one of the many reasons for attrition in clinical studies. Try to imagine going to a clinical study site over 16 times prior to receiving the medication or placebo. I must admit that the pharmaceutical company made it very easy. They sent car service to pick me up and take me home on every clinical study visit. While it was certainly nice to be chauffeured around, I still spent roughly 32 hours of travel time prior to even getting the medication. This does not include the 1 to 5 hours I spent at the clinical study site each week.

 

What They Did At The Site:

At several visits they took blood samples and from what I can recall, they did an EKG at every visit. Each time I went to the site, they went through the UPDRS which is an instrument used to determine where I was on the Parkinson’s disease scale. At each and every visit, the site team administered the Suicidal Ideation Attributes Scale (SIDAS). (What does the D stand for?) This is a testing instrument, administered by a doctor or a researcher, in which the participant is asked in many different questions if they are planning to kill themselves or if they have ever tried to kill themselves. After I took it about 10 times, I started to think of smart-ass replies in my mind. Some of the things I thought to myself were: “Why does my life seem that bad to you?” “Are you trying to give me ideas?” and “Well, maybe if this treatment doesn’t work…” After I received the medication (or placebo) and the pump, they also collected the unused medication as well as the used cannulas and syringes, which I kept in a sharps container.

 

Once I Received The Pump, I Followed The Following Study Protocol

 

Daily:

• Change battery
• Fill new syringe with medication, or placebo from the vial
• Change syringe
• Take carbidopa/levodopa or placebo at the same times each day that I took my regular medication

 

Every Three Days:

Change cannula and tubing

 

How My Progress Was Measured:

• I kept a daily electronic diary with information on changing the infusion site for the cannula, the times that I took the medication or placebo, a record of on and off times, and if and/or when I took the emergency carbidopa/levodopa (I never did)
• A, PKG-Watch
• Study site observations
• UPDRS results
• Counting the unused medication
• Counting the used syringes and infusion kits
  

The pump is heavy and fairly large. At 7.5” x 4.5”, It is over twice the size of the pumps used by people with diabetes. The results, at least in my case, were definitely worth the effort.

 

Results:

I knew that I was definitely feeling better and that there was a good chance that I was receiving real medication and not the placebo. When I watched the video taken on May 6 (first day I started to use the pump) and compared it to the one that was taken on June 4, the changes were obvious. The first thing that I noticed was that my dyskinesias had all but vanished. In addition, my tremor was not as severe and friends and family who saw the videos commented that my voice seemed to be stronger.

 

Before I started using the pump, my medication was not working more than half of the time (8.5 hours daily). These times are referred to as, “off periods.” After I began using the pump, my off periods were down to 2 hours a day! Not only that, during my off periods, my symptoms were much less severe. Prior to using the pump, I was often dragging my right leg and now, during my off periods, I have a slight limp. In addition, I suffer from fatigue much less often.

Modeling My Pump

 

 

Predictions of Things To Come:

If other study participants achieved the same results that I did, this treatment will be a game changer. It could potentially change the way that Parkinson’s disease symptoms are treated. Depending on how long it takes to get the product market, we may see many people wearing pumps at the 2022 World Parkinson Congress in Barcelona.

 

Hopefully, if the treatment is successful, the pharmaceutical company will manufactured smaller pumps. The technology is already out there. It may be possible, for example, to adapt one of the already existing pumps used to treat diabetes. These pumps are much smaller and far easier to use. Over 10 million people worldwide suffer from Parkinson’s disease and in the United States alone, 60,000 people are diagnosed annually. This treatment, therefore, could potentially improve the lives of millions of people.

 

Closing Thoughts:

In late July/early August I will be in the open label phase of the clinical trial. This means that for the next two years, I will receive the medication, the pump and supplies for free! It also means, that my trips to the clinical study site will be limited to once a month.

 

I feel extremely lucky to be one of 130 people worldwide who were selected for this study. I am grateful to the doctors and researchers at the clinical study site and the pharmaceutical company. I am aware that it takes millions of dollars to bring a drug to a clinical trial and in many cases, the treatment fails and never reaches the marketplace. I am grateful to have a job at the City University of New York (CUNY). Working at CUNY allowed me to save up and use the many sick days that were necessary to participate in this study. I am grateful for the support provided by colleagues, friends and family members. Most of all, I am grateful for the love and support provided by my wife Kate and our son Ocean. 

Ocean's Elementary School Graduation

 

 

Some people have asked me, “If the treatment did not work, would you still be willing to take part in another clinical study?” The answer is yes. I would still do it in hopes of playing a very small part in testing a treatment that could help myself and others. Every time a treatment option fails, the Parkinson’s disease community takes one step closer to finding one that will work and ultimately, a cure. If you have the time and the desire to help yourself and others, I strongly recommend getting involved in a clinical study.

 

Epilogue, Fourth of July weekend 2021:

Ocean and I are back at the stream in Treadwell. Ocean tossed in a stone into the stream and said,

 

“I hope that many people will be able to get the Parkinson’s pump so that they can feel better too!”

 

 

 

Thanks for reading...

Pond At The Country House

Wild Flowers, Treadwell, NY

 

 

 

Good Omens and The Clinical Trial

A Crazy Dream 

The other night I woke up from a dream. It took me a few moments to recognize that I was awake because in the actual dream, I woke up with my wife on my left and a tiger snuggling with me on the right.  He followed me though the house (Kate's family’s country house in upstate NY). He was very affectionate, and we were not afraid. Our reaction was, "Hmmm, this is odd, I guess we have a tiger." 

 

 

 I decided to look up interpretations of tiger dreams. This is the one that seemed most relevant:  "Dreaming about a friendly tiger: If you dreamed about a tiger which acted friendly towards you or others, such dream might indicate some situation which puts an end to your fears." 

I am in a clinical trial and on May 6th, I get randomized. Maybe, subconsciously, I really think that this new treatment will help me. I am considering the dream to be a very good omen.

No Tiger King jokes please! I never watched it and strongly believe that wild animals should not be kept as pets.

The Clinical Trial   

Yes, I have been in the study for months and I am finally getting the treatment! This is probably one of the reasons that these studies have so much attrition. What you need to be in a clinical study is patience! In most cases, the process will be very long and require you to be very flexible with your schedule. It can be taxing spending 6 to 8 hours at a doctor’s office. You will need the support of family, friends, and coworkers as well as good sense of humor.  

This Thursday, April 29th, will be my 6th visit to the study site. They have taken samples (blood and urine) and they will do so again this week. I took the Suicidal Ideation test, and I will have to take it again soon. If you have never taken this before, it is a testing instrument with about 30 questions, which are all some version of, "Do you want to kill yourself?” Apparently, this screening instrument is used in many clinical studies. 

I have also been trained on how to use the pump which delivers the medication, and tested to see if I could do it correctly. I have been warned that I will be tested at least one additional time before receiving the medication. I have filled out multiple release forms and financial paperwork for reimbursement. To be honest, I cannot really recall all of the forms that I filled out and signed.

May 6 is the big day! I will either get the medication or the placebo. If I get the placebo, they will test the actual medication on me for 12 weeks after the study (open label phase). Either way, if the medication works for me, I will receive it along with the pump and all the necessary supplies for the next two years.

I am not thrilled about wearing a pump 24 hours a day (except for an hour or two to bathe and exercise) for the rest of my life, but anything is better than taking medication that does not work half the time. Some day in the future they may come up with a better treatment, or even a cure. I may not have to wear it forever. 

You can watch the videos of patients who have used the pump here. To be clear, these patients are using a very different delivery method from the one that I will receive. They have had a surgery, in which a port was placed directly into their small intestine. The biggest problem with this delivery method, as you can probably imagine, is the risk of infection. 

 I will be receiving the medication sub-dermally (under the skin). So, while the videos of the patients at the link above seem very promising, bordering on miraculous, different delivery methods have been known to provide very different results. The results from phase 2 of this study have been very promising, and I remain hopeful.

I want to encourage People with Parkinson’s Disease to get involved in clinical trials (if you can). We cannot just wish for a better treatment or a cure, we have to work for it!  Hope is a verb! 

 

Thanks for reading, 

 

John 

 

 

I Still Believe In A Process Called Hope.

Hope Is A Plan B Presented At Hostos Community College

A Big THANKS to Hostos Community College

I am grateful to Jason Libfeld, Student Leadership Coordinator, for inviting me to present my workshop "Hope Is A Plan B," at Hostos Community College, CUNY. I have worked in Higher Education for over 30 years and I can honestly say that Jason knows more about leadership than anyone else who I know. The students at Hostos were dedicated leaders who encouraged and inspired me.  

My presentation is based by the work of Dr C.R. Snyder who created the Hope Scale. You can take the Hope Scale yourself by clicking here. While there are several articles and books that feature the hope scale, I found the book, "The Psychology of Hope: You Can Get There From Here" by C.R. Snyder, to be one of the most accessible ways to learn about it. Used copies are available from Amazon.

My colleagues know the way I feel about "edutainment."  This is the term sometimes used for self tests and scales that are easy to administer and understand, but lack in research that validates them. Scores of the Hope Scale have correlated to optimism, self-efficacy and self-esteem. Some research indicates that higher scores on the Hope Scale are related to better outcomes in academics and sports!   

C.R. Snyder viewed hope as an active process. Simply put; hope = willpower + waypower (mental plans or roadmaps) used to achieve a goal. Snyder's work also provides

Feedback From Students

Here are two quotes from the wonderful students at Hostos Community College:

“I am legally blind. 10 years ago, I lost my vision and I thought everything was lost. I decided to have a plan. Today, you gave me what I need, a booster. Thank you, John, for this essential treasure and thank you for your story.”

Carlos Santiago

“Thank you so much for sharing with us John great workshop!!”

Isabel Neira

The Presentation

My current presentation focuses on academic performance in college and utilizes the Academic Subscale of the Domain Specific Hope Scale. (This workshop examines the correlation between hope and academic performance.) I am, however, willing to tailor this presentation to almost any audience.

 

                                                This Is What I Want The Participants In My Workshop To Remember

 

Booking This Presentation & Raising $ For Charity

It has been said, that within the Parkinson's community there is a, "conspiracy of hope." Patients, doctors, researchers and representatives from various foundations and pharmaceutical companies gather together at several events throughout the year and discuss plans for ways to improve our quality of life, treatments that will slow or stop progression of the disease and ultimately a cure!  How would you like the people on your campus or in your organization to form a conspiracy of hope?

 

My goal is to put a mini tour together in which I will spread the message of hope and raise money for the Parkinson's Foundation. This presentation can be done in person (after this pandemic) or online. I offer it for free to all CUNY schools. If you are interested in this presentation for your next training or event, the process is simple. First, you email me (jandrejack@gmail.com) and then, we decide on a fee that works for your budget. Next, you write a check for that amount to the Parkinson's Foundation! 

 

In short, I will not profit off of any of these presentations, the individuals in your organization learn about the process of hope and together, we raise funds to fight an incurable, degenerative disease! Please email me!

 

 jandrejack@gmail.com

 

Thanks for Reading

John