A Testimonial
Written in April 2007
Oncle Gustave
The first time I heard of, and met, Oncle Gustave I was four or five years old, I remember going, with my mother, directly from pre-school to see this important uncle. I learned later that Oncle Gustave was Nonna Clemy’s favorite brother, which is probably the reason why my grandmother wanted to show off her grandson.
I remember being proudly dressed in my school uniform, with the school yellow and brown tie and brown cap. I also remember sitting down on a chair and shaking my leg to the point of having my aunt Nelly to tell me to stop shaking… was that the first sign of Parkinson?
Oncle Gustave must have been dealing in nylon stockings, because the only other thing I remember was him giving nylon stockings to his sisters and nieces.
It was some three decades later that I saw Oncle Gustave again, I was in Paris on business and Nonna Clemy asked me to come with her and see Gustave.
What I saw was an older man sitting on a chair in the living room of this classy apartment where pieces of art were hanging on every wall.
Oncle Gustave, I learned later, was afflicted with Parkinson Disease, could barely move his legs and had extreme difficulty talking. None of the art pieces or other fortunes could make this man walk and talk again. He died a few years later.
It is with this knowledge of Parkinson Disease that I found myself, a decade later, outside Stanford Hospital in my car crying like a baby…
I had just found out that I had Parkinson’s, like Oncle Gustave. But he was in his seventies, I was only 44 years old. Shall I end up in a chair like my uncle…
The optimist in me forced me to refuse to look at such a bleak future and understand my options, I remember asking my doctor what was I to expect and his answer was “Well, there are certain things you will not be able do in five to ten years.”
So I decided to start playing tennis, and I found a partner and played every week for some ten years.
Oncle Gustave
The first time I heard of, and met, Oncle Gustave I was four or five years old, I remember going, with my mother, directly from pre-school to see this important uncle. I learned later that Oncle Gustave was Nonna Clemy’s favorite brother, which is probably the reason why my grandmother wanted to show off her grandson.
I remember being proudly dressed in my school uniform, with the school yellow and brown tie and brown cap. I also remember sitting down on a chair and shaking my leg to the point of having my aunt Nelly to tell me to stop shaking… was that the first sign of Parkinson?
Oncle Gustave must have been dealing in nylon stockings, because the only other thing I remember was him giving nylon stockings to his sisters and nieces.
It was some three decades later that I saw Oncle Gustave again, I was in Paris on business and Nonna Clemy asked me to come with her and see Gustave.
What I saw was an older man sitting on a chair in the living room of this classy apartment where pieces of art were hanging on every wall.
Oncle Gustave, I learned later, was afflicted with Parkinson Disease, could barely move his legs and had extreme difficulty talking. None of the art pieces or other fortunes could make this man walk and talk again. He died a few years later.
It is with this knowledge of Parkinson Disease that I found myself, a decade later, outside Stanford Hospital in my car crying like a baby…
I had just found out that I had Parkinson’s, like Oncle Gustave. But he was in his seventies, I was only 44 years old. Shall I end up in a chair like my uncle…
The optimist in me forced me to refuse to look at such a bleak future and understand my options, I remember asking my doctor what was I to expect and his answer was “Well, there are certain things you will not be able do in five to ten years.”
So I decided to start playing tennis, and I found a partner and played every week for some ten years.
Tennis
This tennis decade was the most fulfilling of my life…
I allowed myself to forget my condition and focus on the pleasures of life. Professionally, I was very successful in cementing solid relations with key European customers; this allowed me to travel extensively to Europe and enjoy the gratifications of a jet set life.
I achieved this while remembering my responsibilities and obligations of fatherhood. I was very lucky to have two daughters who were very understanding and rewarding.
I ignore if there is anything more satisfying for a father than go to his daughters’ graduation.
Thank you Gal and Sharon.
Maybe I am being sentimental but I really enjoyed the times I was discussing things with my daughters’ classmates and see them grow up.
Spending numerous hours on the air, or in airports, gave me time to read; and since I found interest in history, I spent my free time visiting museums or churches when traveling in Europe. I always admired the beauty that surrounds us, whether it is the Pantheon in Athens, the four thousand year old cuneiform tablets in the British Museum, the Mona Lisa in the Louvre, or some ancient temple in Seoul, Korea.
Spending numerous hours on the air, or in airports, gave me time to read; and since I found interest in history, I spent my free time visiting museums or churches when traveling in Europe. I always admired the beauty that surrounds us, whether it is the Pantheon in Athens, the four thousand year old cuneiform tablets in the British Museum, the Mona Lisa in the Louvre, or some ancient temple in Seoul, Korea.
As time went by my Parkinson required me to increase the dosage of artificial dopamine for me to feel and function “as I was before”. But it was an illusion, I knew that my shaking and tremors would continue, and I had to keep my positive outlook, not withstanding the terminal nature this Illness on my future, hoping for a new development in finding a cure for this illness.
As I look back, I noticed that I was becoming more and more defiantly assertive. I was trying to live with several behaviors which I would never before have dreamed of, the most severe was my propensity to smoke crack cocaine.
As I look back, I noticed that I was becoming more and more defiantly assertive. I was trying to live with several behaviors which I would never before have dreamed of, the most severe was my propensity to smoke crack cocaine.
In all the past years, living a very active cosmopolitan life style, I never found the need to ever try taking drugs, even growing up a Beetle fan in the sixties in no way gave me the compulsion to look beyond Lucy In The Sky With Diamonds… never requiring a little help from my friends.
But as I took more and more crack, I entered a life style which I never dreamt I would participate in, and culminating in my going to jail for ninety days, because the judge did not believe I was serious about quitting the cocaine habit…
Over the past years, I have tried seriously to stop smoking crack, but every time I would tell myself with all sincerity, no more, I would turn around and go buy some more… I had a sincere desire to stop… but something was impeding me to do it.
But as I took more and more crack, I entered a life style which I never dreamt I would participate in, and culminating in my going to jail for ninety days, because the judge did not believe I was serious about quitting the cocaine habit…
Over the past years, I have tried seriously to stop smoking crack, but every time I would tell myself with all sincerity, no more, I would turn around and go buy some more… I had a sincere desire to stop… but something was impeding me to do it.
I tried going to several programs, but after a couple of weeks outside, I would do it again… all the promises I made to myself, and others, I was unable to keep… and my tremors and shakes increased, so I would increase the dosage of medication, never dreaming that there was a link between them.
The relation I had tried to keep with both my daughters was non existent, it got to the point that I was not allowed to see my grand daughter anymore. So I made an effort to stay clean, and I did with modest success, I was able to count my sobriety from days to weeks… which was a big feat for me.
A few months back I had tried, through my neurologist at Valley Medical, to register in Stanford Hospital’s Deep Brain Surgery program. In the meantime I made one last attempt to sober up, by putting my stuff in storage and sign up for a residential program again… hoping for some miracle.
So here I am in a program again, kidding myself that this time is different. This time I am going to make it… (?).
The relation I had tried to keep with both my daughters was non existent, it got to the point that I was not allowed to see my grand daughter anymore. So I made an effort to stay clean, and I did with modest success, I was able to count my sobriety from days to weeks… which was a big feat for me.
A few months back I had tried, through my neurologist at Valley Medical, to register in Stanford Hospital’s Deep Brain Surgery program. In the meantime I made one last attempt to sober up, by putting my stuff in storage and sign up for a residential program again… hoping for some miracle.
So here I am in a program again, kidding myself that this time is different. This time I am going to make it… (?).
First Miracle
During my first week in the program I received a letter from Stanford Hospital, inviting me to go and test for DBS. During the long six hour session the doctor asked me if I had any compulsive behavior, like gambling. Having just learned the day before (in my program) about compulsive behavior being a form of addiction, I said yes… and it is not gambling, it is cocaine…
Apparently, the Parkinson medications I was taking for many years (Requip and Mirapex) had a side effect of giving a compulsive behavior, The medication gave a dopamine punch so strong that it had the brain go for compulsive behavior.
When the doctor heard that, she immediately took me off Requip, in a two day phase-out plan… and that is when the miracle occurred… as I stopped the Requip my craving for cocaine disappeared… that desire I had every morning, and was fighting daily, for drugs disappeared…
I just cannot believe it, all the desires I had “for living on the wild side” are all gone. It is as if it is a very distant memory of someone else. Today, it is hard for me to believe that I craved for such things as picking cigarette butts in bus stops and going to sleep in shelters.
It appears that I totally killed this Albatros away from the realm of my existence.
It appears that I totally killed this Albatros away from the realm of my existence.
My daughters, who have lived through my numerous promises that “this is it”, were justifiably skeptical at first, they were afraid of seeing me fall down, as in the past, and succumb to another fall to drugs.
But this time was really it… the craving I had waking up every morning, a craving which I was fighting every single day for the last years, had really disappeared… without any nostalgic thoughts or feeling.
Second Miracle
With crack cocaine behind me, I now focused on getting ready for my surgery, remembering that I had just switched from Requip and was taking a much weaker medication… which allowed me much less mobility. Also I had to find a new living place, since I had finished with the program I was in.
Luckily, after a few mishaps I found the ideal location, a senior community with in-house nursing capabilities… and located far away from any drug infested environment.
The surgery was performed in two phases, the first one was to implant a couple of probes deep in my brain (making me a cyborg), a week later a pacemaker/generator was implanted in my thorax and connected to the probes. Apparently both these surgeries were positive.
The probe was not connected to the generator, and would not be for another week, so I had to wait for the results…
During that week, even though everyone was telling me that all was OK, I was very restless, praying that everything was really going to be all right.
During this last month both my daughters have been very helpful in every step of the medical procedure, in finding a place to stay during this waiting period, in being with me during every step of my surgery, even doing my laundry… I can safely say “could not have gone through all this without you”.
Again, Thank you Gal and Sharon, and thank you Dahlia for your smile.
Then on March 8th, one month after the first surgery, I went in to connect and calibrate my generator… and it works!!! My shakes (after twenty years) are gone.
For those who have known me for a while… Ivo is now free of drug addiction and free of any tremor and shake…
If this is not a double miracle I don’t know what is…
For those who have known me for a while… Ivo is now free of drug addiction and free of any tremor and shake…
If this is not a double miracle I don’t know what is…
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