A few weeks ago, we received information that the results of the Nilotinib study were published in The Journal of Parkinson's Disease. You can go to their website.  It's in the current issue. I picked myself out of the list of participants (#11) and began to look at the results.  The next time I see Dr. Pagan (in August), I intend to get a more detailed and understandable report. In the meantime, I will get Dr. Drew Falconer, our second neurologist to share his opinions about the results and mine, in particular. Dr. Pagan will be beginning another trial with PD patients, I think, in the fall. Also, there will be trials for ALS and Alsheimer's Disease at Georgetown.  We also checked out the Michael J. Fox Foundation and found that they will also begin a trial with Parkinson's patients.  This is highly encouraging.  While the neuroscientists in association with the MJFF were critical of the "hype" they believe came from such a little study with so few participants and no double blind "scientific" components, they still believe it's worth researching.  Only people who have a degenerative, debilitating disease understand the need for HOPE.  That's why I and a number of others are taking Nilotinib and paying a lot of money for it.

By the way, our second neurologist, Dr. Falconer, has recommended that I consider getting Deep Brain Stimulation on the second side. He says that since I'm only being stimulated on one side, the second side would be advantageous.  DBS made a big difference for me when I had the first side done in 2008, so I'm thinking about it.  Eighty to ninety percent of people having DBS note improvement in their symptoms.  The researchers say that about 30% of patients with Parkinson's Disease are good candidates for DBS.

We received a call from the communications person at Georgetown last week.  She said that CBS Evening News was interested in talking with us a year after the trial.  When we know more particulars, we'll share it.

The Study

The Study

We went to Dr. Pagan and over a period of two years, I was involved in a study using Apokyn (a rescue drug) and I received botox in my feet for rigidity.  I had always been eager to be involved in trials and had participated in many in the Atlanta area.  When I saw information about a clinical trial using Nilotinib, a drug now used for Leukemia, I asked about participating.  Dr. Pagan’s only concern was the number of trips we’d need to make to Georgetown for the nine month trial.  We assured him we could do that easily.

I was tested first to see if I was a candidate.  Nilotinib can potentially cause irregular heartbeat, so an EKG was called for.  Bloodwork was also done.  Parkinson’s mental and physical testing was completed and I was told that I qualified.

Over the next six months, we made multiple trips to Georgetown.  Each time an EKG was done to ensure that the QT interval was appropriate.  Bloodwork was done to ensure that I had sufficient minerals and vitamins in my system, and three lumbar punctures were administered. 

The study was labeled as a safety study to see if Parkinson’s patients could tolerate low doses of Nilotinib.  The hope was that it would not only be safe, but also that alpha-synuclein in the spinal fluid and tau in the blood stream would be reduced.  These are plaque forming substances that cause brain cells to die.  Patients were randomly assigned to either a 150mg or 300mg dose of Nilotinib per day.  Strict guidelines for timing the doses were adhered to.  Everyone took medication-there were no placebos given.
                       
The results were significant.  All 11 people who completed the study improved.  We walked, we talked, we thought with greater ease and clarity.

Dr. Pagan videotaped me in the “get up and go” walking test at the beginning of the study and every visit afterward.  Soon, I was walking steadily in half the time of my original walk.  My speech was louder and clearer, I was no longer falling, I was less confused about things in general, and my life was considerably better.  I had always been an avid reader, but had not read a book in a long time.  I just couldn’t concentrate enough.  I first read the David McCullough book on the Wright Brothers and then progressed to others.  I was thrilled!

The study consisted of taking six months of medication.  Three months after the medication ended, I returned to Georgetown for testing again.  I had begun to regress without the medication.  During the trial, the pharmaceutical company, Novartis, made a verbal commitment to continue to provide the medication for no charge to the trial participants.  That did not happen and resulted in much frustration on the part of all of us.  We held out, hoping that Novartis would come though. 

The study was reported at a conference of Neuroscientists on October 17, 2015 in Chicago.

In preparation for that conference, information from the Georgetown communications person was released to the media. (See attachment 1).  Immediately, our phone began to ring asking us to be interviewed. We were interviewed by NPR, NBC, Fox News, Univision, TV Globo-Brazil, and the Daily Mail in London. 

News services picked up the story and our daughter, Jennifer, googled me to tell me that I was mentioned in thousands of articles.

https://www.youtube.com/watch?v=Rifa6LPy60A

Then the phone really began to ring.  Parkinson’s patients and/or their caregivers looked up our phone number and began to call.  There was a great deal of interest in the process and especially in the results.  We spoke to people in twelve states and Canada.  They wanted to know all about my symptoms, duration of the disease, how I was doing, where we got medication, etc. etc. etc. In short, they came looking for hope and found it.  We began to expect return calls from people we had talked with who were in the process of getting the medication, were just beginning it, and wanted us to anticipate when positive changes would occur for them.



When Novartis didn’t come through with their promise of providing medication by the time of the conference, we began to investigate costs.  While Nilotinib is an FDA approved drug for cancer, insurance will not pay for it to be used to treat Parkinson’s disease. We found it at a pharmacy in Canada for $5321 for three months’ medication. While the costs are exhorbitant, we were blessed that my younger brother helped to pay for it.  We ordered it and I began taking the medication again on November 22, four months since my last dose during the trial.  During those four months, I had regressed a lot.  It took about two months of medication to see positive changes.  I believe that I will continue to improve as time passes.

Millions of people worldwide have Parkinson’s and/or Lewy Bodies Disease.  If, in fact, Nilotinib/Tasigna, can continue to decrease the plaque that causes brain cell death, there will still be millions of people who do not have access to the drug
because of cost.

During the time I was off Nilotinib, I wrote a few articles to express myself about pharmaceutical companies. I will be sharing them as a part of this blog.

I am beginning my 9th month of medication.  I have many more good days than bad days.  I am hopeful that this medication will continue to help me feel better and better.
                   
We understand that there is research going on in Israel and England that is focusing on something similar to Nilotinib , phage, that has similar results.  The researchers are hoping to find a cure for Parkinson’s, Alzheimers, ALS.  We pray that they will.  Hopefully, I will still be alive to reap the benefits of the research.  If not, though, I am heartened to think that millions of people may be spared the debilitating effects of a degenerative neurological disease.

Whenever you have a degenerative, debilitating disease, you become a member of another “family”.  All of us are in this together.  I have learned so much during my 19 years with Parkinson’s about finding your purpose in life, about building relationships with people you love, about kindness, about looking everywhere and not being afraid to try medications and trials and surgery and anything else that might help you or others who share the same burdens, about making your life count for SOMETHING.  To paraphrase the educational psychologist Louis Raths, “to make a difference that you lived at all.”

Our move and new PD doctors

The Move to Virginia and New Doctors

During an Easter visit in 2012 with our daughters in the DC area, our son-in-law said that he wanted to have a serious talk with us.

We were puzzled and waited to hear what he would tell us.  We were surprised when he said, “It’s time for you all to move up here.  Laura Jane and Jennifer (our daughters in this area) will be the ones to take care of you.  You should come now and see your grandchildren grow up.”  After telling him we’d infringe on his family’s life, he looked me straight in the eye and said, “Come on.” 

We had never considered moving to the DC area- we always felt it was too expensive with terrible traffic.  Being asked to move here by your son-in-law motivated us to get busy, sell our house in Atlanta where we had lived for 42 years and strike out for an adventure in Virginia.





The first concern we had was finding a neurologist who specialized in movement disorders.  Dr. Michael Okun, Alan’s physician in FL, recommended Dr. Fernando Pagan at Georgetown University.  They had known each other for some years and he felt that Dr. Pagan would take good care of me.

DBS Surgery

Getting Ready
 

Surgery more than four months away- what could I learn, experience, do that would divert me from worrying about it?

Step 1- I found myself on a search for God and the meaning of life.  I talked with the Monsignor of the local Catholic Church (I was raised Catholic); I spent half an hour with him and told him I was ready to die if it was time.  Father Tom Reilly said, “I think God has a larger plan for you-let’s pray for that.”  Nancy and I spent a lot of time talking about God.  She was working hard to get me spiritually ready for surgery.

Step 2-I talked with friends who practiced a very deep faith in God.  They encouraged me to have faith, hope, and a positive attitude.

Step 3-I read, watched, and listened to a collection of books, CD’s and DVD’s that broadened my knowledge of Eastern meditation, thought, and religion.  I began to meditate on a daily basis.  I was more at peace with myself and the world than I had ever been.

I continued to grow.  I was trying to leave no stone unturned.  I remembered an audiotape of a speech by the late Leo Buscaglia in which he describes an old man with no teeth and dirty clothes sitting along the river in St. Louis.  He was the kind of guy most people would pass by without noticing, but Leo, being Leo, was bored with speech after speech at the convention he was attending, so he sat down and engaged this man in conversation.  Finally, Leo asked the man for the one important thing he’d learned in his life.  The man said, “The secret to life is to keep your mind full and your bladder empty.”  Buscaglia said that was the best advice he had received during the entire conference because…”you see, most of us do the exact opposite; we keep our bladders full and our minds empty.”  (Source unknown)

I began to think about the support group I wanted in Gainesville during the surgery.  Family and best friends rounded out the list.  I wrote each a letter in advance letting them know how much I appreciated them giving their time to come to FL to be with us.  My ending paragraph was: "With my love army in tow, I believe I’ll be successful in the surgery and that more will be expected of me regarding reaching out to others.  If something should happen, know that I have had a great life and that I expect each of you to love one another."
      

I was reminded by my daughter of Shelby’s words in “Steel Magnolias”-… “I’d rather have thirty minutes of wonderful than a lifetime of nothing special.”

The Surgeries

The “wonder boys’, Drs. Michael Okun and Kelley Foote were better in every way than I could have ever imagined.  I would give a testimonial for them ‘at the drop of the hat’.  They were so skilled, so dedicated, and so caring that the two surgeries were not nearly what I thought they’d be.

I was awake for the first one- drilling a hole in my skull, using a camera to pinpoint where the contacts needed to be placed in my brain and clumping the wires at my hairline.  The surgery didn’t begin until Dr. Okun came in.  He was so excited to share with me that his 6 month old son had recognized himself in the mirror.  He said, ‘that’s smart, isn’t it, Alan?’ I was afraid he might go back home to see more. HA! When Dr. Okun came out to tell my family that I had done well and they were almost finished and would be sending me to the recovery room, he reminded them that I might act “goofy”.  Our middle daughter, Allison, said “how will we know?”  After some days of recuperation at the Laurel Oak Inn (our home away from home that is owned and operated by the wonderful Monta and Peggy Burt), we went home to Atlanta to wait for a month for my brain to shrink (it swells when it is tampered with).



The next surgery consisted of bringing the wires under the skin and attaching them to a stimulator that was put into my chest.  We stayed a week and they programmed my stimulator for the first time.

They continued to program my stimulator over a period of six months and I was ‘good to go.’  And go, we did.  DBS provided a great boost to my life.  I began doing things easier and better and happier than I had in years.
                       
We spent time traveling and thoroughly enjoying each day.  We found a church that we loved and became very active members. As the disease progressed, however, I began to slow down and we wondered what our next steps would be.

A Chance Encounter and the Wonder Boys

A Chance Encounter?

My wife is a doer-cleans house, hosts parties, plans trips abroad, etc.  We’ve spent much time enjoying Italy, Austria, Switzerland, Germany, Scotland, England, Canada, St. Martin, Greece, Croatia, Santorini, Mykonos, Capri.  Most times, things have gone relatively smoothly.  At other times, I suffered through most of the trips.  I just ran out of energy after 10 or so days, and it took me a week to recover after returning home.  On a trip to England in 2007, we spent the first week with our best friends from New Hampshire and her English aunt and uncle.  


It turned out that the aunt’s niece was celebrating her 50th birthday with a ‘summer ball’ and we were invited.  We were told that her husband had PD and was in such bad shape that he most likely would not attend.  When we arrived at the party, Tom stood out- very dapperly dressed in a white dinner jacket, handsome, and appearing to be in good spirits.  However, his PD overrode all his natural and moneyed appearance.  We gravitated to each other and talked about solutions, including suicide.  I had to be honest that I had considered it.  Our conversation became even more depressing as we drank.  It turns out that he was a candidate for DBS in England in 2001.  About the time of surgery, he was involved in a car accident which left him a less desirable candidate.  He had missed his window of opportunity.  I spoke with his daughter and his wife who, in each conversation urged me to get DBS surgery.  His wife, Deidre, said if it was only 50% successful, she’d recommend the surgery.

We came home from that trip determined to see if I was a candidate for DBS.  When I told my neurologist, he was concerned.  “You’re not that bad…why risk it all, even if the odds are in your favor?”  After we spoke with the department chairman, who agreed that only the patient could determine when an alternative might be helpful, we decided to investigate successful neurosurgeon/neurological teams.

Our daughter determined along with a colleague who knew a lot about successful DBS surgeries, that Michael Okun and Kelley Foote at the University of Florida, Shands Hospital, were the perfect pair for us.

The Wonder Boys

When we went for our first appointment, we couldn’t help but remark that Dr. Okun looked so young that we called him “Doogie Houser” after the old TV program about a very young, very brilliant character who became a doctor at a very early age.  Dr. Okun changed medications, hoping that the change would be positive.  When the changes didn’t help that much, he made an appointment for me to be tested-physically, mentally, psychologically, emotionally, to see if I was a viable candidate.  I passed and the first surgery was scheduled four months later. They said I was being “fast tracked” for surgery.  Four months later didn’t seem like a fast track for me.

The Beginning

The Beginning

My wife tells me that ‘there are no such things as coincidences.’ I had always been skeptical of anything ‘spiritual’ or mystical.  As a faculty member and colleague of mine at the university once said, ‘wishing is witchcraft or, at least, it seems that way.’ But, strange coincidences or spiritual guidance has led me to believe that Nancy, my wife, partner, and caretaker, is ‘right on.’

In 1997, at age 56, I retired from university teaching with 30 years experience, a nice pension, and felt that life was going to be sweet.  Nancy began to notice a tremor in my left arm.  On our daily walk/run, she mentioned that I was not swinging my arms at all as I ran.  When my left hand froze using garden clippers, she made an appointment with a neurologist.

After 45 minutes, during which time the neurologist asked many questions and put me through several physical tests, he diagnosed Parkinson’s Disease.  Nancy didn’t tell me then, but several years after the diagnosis she remarked that she had to hold on to the chair in which she was sitting so she wouldn’t fall out.  The neurologist began to talk about what having Parkinson’s meant.  We were in shock.  He said that Parkinson’s Disease alone wouldn’t kill me, but related illnesses probably would.  I might end up in a wheelchair, unable to care for myself.  He offered several books to read.  I took a couple, then went off for an MRI to ensure I didn’t have a brain tumor.  I didn’t.

What is Parkinson’s Disease exactly?  As a lay person, I know that in a Parkinson’s brain, the cells that produce dopamine which enable us to perform all sorts of motor tasks, function every day, think rationally, are dying.  Those cell deaths result in all sorts of motor function problems-we have tremors; we are rigid; our ability to move, to speak, to write decreases; ’executive functioning’ abilities decrease; we are depressed.  In short, our lives change dramatically.  The speed at which the disease progresses in people is as varied as the number of people who suffer from it.  Parkinson’s Disease was first diagnosed by Dr. James Parkinson in 1817.  According to Dr. Parkinson, it was a disease of ‘tremors’ and ‘shaking.’  Causes appear to be heredity and/or environment.

There was no Parkinson’s in our family.  As a teenager one summer, I worked in a factory that manufactured clothes dryers.  As the parts of those dryers were painted on racks, the paint that accumulated on those racks had to be cleaned off every night.  We dipped the racks in vats of Benzine, now known as a toxic chemical.  I believe that Benzine exposure contributed to my Parkinson’s.


That day in 1997 began a new chapter in my life.  We first had to call our daughters, other family and friends and tell them the ‘awful truth’.  I can remember telling Nancy as we left the neurologist’s office that, at least I didn’t have cancer.  However, my true reaction to the diagnosis was denial.  I didn’t want to attend Parkinson’s support group meetings where I saw people asleep in wheelchairs, frozen while they tried to walk, and where canes and walkers were in abundance.  Michael J. Fox’s book, “Lucky Man”, had no appeal to me.

For six years I controlled my PD with Requip.  Then Sinemet was added.  For ten years, while I had little inconveniences like drooling, dystonia in my big toes, an addiction to gambling (which I attribute to requip and my ADHD personality), and a few hard falls, I did quite well, especially compared to those friends I met who were suffering PD symptoms, but had far worse diseases than Parkinson’s.



I had ‘inside’ help from our daughter, Laura Jane, who worked for the Parkinson’s Action Network as the Director of Outreach.  She always gave my excellent advice.  Laura Jane brought me ‘out of the shadows’ of almost denying my condition, not wanting to read or talk about it to becoming involved in conferences and meeting people with similar conditions.

 She took me to conferences where she was speaking, using my situation in her talks, charming people, using a lot of humor.  As my condition grew progressively worse, she talked to Nancy about DBS and how she felt I would be a perfect candidate for it.  At first I didn’t agree, but these two women really run my life very effectively.

We began to read about DBS, which by 2008, had been used to treat about 30,000 people.  In 2002, the FDA in the US approved the use of medical devices now known as Deep Brain Stimulation.

Introduction to a little hope

Introduction to a little hope

   

I began a blog following Deep Brain Stimulation Surgery in 2008, hoping to inform possible candidates about what “it was really like.”  For additional information, go to http://www.pacemakerforthebrain.blogspot.com. After adding a year later follow-up, I thought my blogging days were over.

    Why am I starting again?  I was involved in a clinical trial at Georgetown University Hospital in 2015 dealing with Nilotinib (Tasigna), a medication already in use for patients with Leukemia.  It was categorized as a safety trial to see if Parkinson’s patients could tolerate it in much smaller doses. 

Dr. Charbel Moussa and Dr. Fernando Pagan hypothesized that substances in Tasigna could reduce the amounts of substances in the bloodstream and spinal fluid that cause plaque in the brain and thus cause cell death.  The results of the small (11 people) trial were substantial.  The quality of life issues that all people with degenerative illnesses face were improved for all 11.  Patients began to walk, talk, think better than they had for a long time.  The research was presented at a Neuroscience Conference in Chicago in October of 2015 and immediately attracted international attention.  Nancy and I had been interviewed by several news groups in October and soon began to receive phone calls from Parkinson’s patients and/or their caregivers from all over the United States and Canada.

This has continued with return calls from the original 12 or so people we have corresponded with via email and phone and we continue to get calls from ‘new’ people who have just found out about the clinical trial.
                       
    So… I thought it might be time to blog again to tell my story (including some of the original blog), but adding the years since my DBS story.  I have asked two additional people to respond/react/expand the Parkinson’s story.  One is a neurologist, new into his own practice, who was a fellow at Georgetown University during the time of the trial.  The other is one of the first people who called us following the conference in Chicago.  He is an attorney who has a food fraud business and lives in New York and his Father, who has Parkinson’s Disease, lives in Ottowa, Canada.  As a child of a parent with Parkinson’s, he brings a different perspective to the story.

It is my sincere hope that this information will be helpful to every reader.  We all need HOPE.

Sincerely,

Alan Hoffman