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Monday, February 03, 2014

MEANINGS

Let me try to explain better what I meant to say in my post of yesterday:
1.       my TBI is more like a stroke in its effects and main disability (inability to walk)
2.     the guess-science has been helping already for decades stroke victims to walk again (spasticity and neuronal death)
3.      my TBI is probably similar to an Hemorrhagic stroke
4.     My biggest sadness and frustration is that the mother of my treasures has been refusing to even think to ever live with me again.
5.     my second biggest frustration is that I’m not allowed by my current conservator to be assessed again by a doctor  who’s never seen me before, is probably very professional, has nothing to gain in assessing me as unable to manage my money but nobody seems to have any interest in lending any help to me to return to be free as any other individual in the “country of freedom”
Unless something changes for the better in my life going forward, I’m going to stop to use this blog to release of my frustrations.
Let’s all “hang in there” because my hopes (big and small) will only die with me.




Saturday, January 25, 2014

WHY AM I STILL LIVING?

I have come up with my own reason that’s realistic/objective for this.
My idea is that I was in my best shape of my entire athletic life, I remember that I had reached a body-weight below the standard charts used to categorize high level athletes and the real reason why I survived my accident is that my body weight, fitness level, muscles tone and heart strength were above average for my age, that wasn’t advanced at all (42).
So my body rapidly recovered but for my brain nothing really could be done, given that’s still a science in need to be fully developed, so while my body wasn’t injured at all (8 years ago) my brain lost plenty neurons in the motor cortex and right occipital lobe areas, that means that I’m now hemi paretic on the left side of my body and have a field cut in my vision on the left (again!).
I think that I went through all the stages of the “after TBI” period as described in all the neurology text-books, aggressive and violent period, suicidal period (2 times) and depressive (that I’m still trying to take care of).
I’m still dealing however, with the complete refusal that a brain cannot be healed or repaired when injured; I cannot believe that we went to walk on the moon about 40 years ago and at the same time, we still have only research hypotheses, but no established, proven therapy on what to do in cases of TBI.

Too many times each day I ask to myself why am I still living when for Michele I died in 2005 and my family in Italy I’m just a big burden. Then I think – as everyone knows – to the real existence of God and that we were given the brain that isn’t the product of evolution but the receptor to be in touch with the creator of the universe, since the “big-bang” and this concept makes me pity any doctor (sadly even Ph.D.) who believes to be able to understand how someone thinks (uses the brain) when injured, in fact I’m now imprisoned and cannot live with my own family only because one of these “geniuses” assessed me as incapable to count to 3 and all of the money I’ve ever earned in my honest life of work across continents at the highest managerial levels is in the hands of a conservator who by age could be my daughter while my (still) very beloved wife (mankind cannot separate what God united) and mother of my treasures tries to survive with the little money I must give to her according to the sorry and bad divorce we had to do and her soon to end employment.

Saturday, December 14, 2013

AMAZING PARALLELL

It’s just came to my mind of devoted listener of all the recordings and movies ever made about Glenn Gould that he died few days after he had turned to be 50 y/o and while I do keep hoping that the God in which I believe (sorry Iacopo) is going to take me back again very soon (too much suffering), I do realize that I really haven’t done in my life anything even close to be remembered with the passion and sorrow that Glenn does command in all of his passionate listeners.


What’s exceptional and unique about what Glenn did first isn’t so much that he played Bach on the piano almost like he was recomposing the works of Bach, but mostly that he transferred his exceptional capacities to the act of recording and filming them all, in fact his recording of the Goldberg Variations has been a best seller for about 40 years after his death, so I see this like a perfect piano player with the additional gift to understand and know how to record his own magical interpretations of the works composed by Bach, several hundreds of years earlier.

Given that I had 2 children/treasures I think that I have an advantage over Glenn, but since my deal with the Almighty was about me keep on living to be with my 2 treasures whom I can only see on Sundays for few hours, this isn’t truly like maintaining my promise I made in exchange of keep living, and even if I’m about to move much closer to them, a very big obstacle remains between me and my treasures, named Michele, or their mother.

So in trying to imagine ways to be remembered for few decades after my death (only God knows when) I came up with few ideas that I’m going to list here below:

1. after the exceptional and unique full recovery from TBI return to work again in the footwear business

2. keep working on this blog to make it become like an internet site of destination for the many people who browse in the internet to find inspiration and answers to the many questions of life

3. Spend quality time with my treasures who’ll eventually spread my experience and knowledge around.







Monday, November 11, 2013

PATRIOTISM & CAPITALISM



You all saw my posts invoking the patriotism to move forward with the re-purposing of the Enbrel medication for something different than what was approved by the FDA for (rheumatic pain, AS), but a friend of mine told me by email that here in the USA capitalism is certainly a much stronger feeling than patriotism. My mistake is that I was born in Italy that’s been a country under the political control of the countries it borders with for several centuries (France, Spain and Germany); it wasn’t until the 18th century that with Garibaldi and G. Mazzini Italy became an independent State (Republic) with its own political system, a parliament and its own President.
I guess that given that this independence took place not too long ago, every Italian has a strong patriotic drive to take care of the Italian borders, arts history and language.
While here in the USA we celebrate the Independence Day on July 4th to remember what was done on that same day in 1776 our American history is very different from the Italian one, meaning that here in N. America we were never invaded physically in any territories, we had to break the dominating relationship away from the very distant UK monarchy (kings or Queens). Even today in Italy the Italian language is very influenced by the official language of the previous country that dominated the area, so in the South of Italy the “dialect” is very influenced by Spanish, given that the Bourbons of Spain ruled the South of Italy for very many years, while in Tuscany it was France that used to treat that region of Italy as an extension of its territories, so there even today the local slang (dialect) is still very influenced by the French language.
Every part of Italy used to be under the political and cultural influence dominion of the country geographically closest to it and I can add i.e. that Sicily used to be very influenced by Greece, there still exist there several Greek temples and other types of monuments, similar to those in the Athens’s Parthenon and Verona and its slang are influenced by the German language and culture, given its proximity to both Austria and Germany.
So the patriotic feeling is very ingrained in the attitude of every true Italian and this is very different from the patriotism of any American, even if the independence wars took place at about the same time. What’s even stronger in any real American of the USA is truly the “capitalism” or an economic system based on private ownership of property and business, with the goal of making the greatest possible profits for the owners.
So this same friend told me that for the already wealthy and profitable Amgen to ask to the FDA to approve the use of the Enbrel – a very strong TNF-alpha reducer that also reduces the immunological system of the person who receives it - it’s close to impossible to use several hundreds of millions of $$$ that a repurposing by FDA costs, to have Enbrel approved for neurological recovery needed after a TBI or to treat the Alzheimer.
This actually explains the reason why I’ve been emailing our current President Obama, the governor of the California State and even the few other companies in this business of the TNF-alpha, (i.e. Remicade, Humira, Cimzia, and Simponi) to go after the approval for TBI recovery, that’s still wide open and that can surely generate huge profits given the vastness of what I call the epidemic of this new millennium.
I’m however in great hopes that the Obama sponsored BRAIN project will realize that such anti-inflammatory agent is of strong help for TBI recovery.
I can only say:”let’s wait and see”.

How much longer am I going to have to wait to receive the Enbrel treatment given that it’s pretty obvious that it’s a treatment that can generate very much money to all who can provide it?


Monday, September 30, 2013

ICEBREAKERS

There must have been some initial large investment of money for these 2 doctors who I call “icebreakers” because they’ve started much earlier than the complete medical environment to treat using a TNF-alpha medication (Etanercept or Enbrel) to tre
at victims like me to have neurological improvements following either a stroke or TBI (= brain damage).
Normally whenever someone starts doing something new with success there’s a number of “followers” filing right behind the innovators or icebreakers, but this is the case that makes the complete exception, I can’t believe that it’s just a matter of the money needed for the initial investment, that can be made again by treating the first few patients, given that the basic ingredient is pretty inexpensive and not much of it, is really needed.
The sad result of this exception is that I’m going to have to wait for the “potential” future approval of the use of Enbrel for TBI by the FDA that only someone else – other than Amgen/Pfizer – will fund for the medical testing (trial) and approval.
These two “icebreakers” are geniuses for having been able to see and forecast the payoff of their investment or maybe they really took very seriously their Hippocratic Oath of dedication to the improvement of their patients’ conditions.
Again it’s very possible that my complete ignorance of the “guess-science” is making me see this case in a very twisted way, but I still I cannot figure out a reason why none of my doctors hasn’t at least accepted my begging to at least “try” it, especially given that all they keep doing all day long with all of their patients is to “try” to prescribe something that nobody ever knows if it’ll work for them/their conditions.

As I’ve been writing here for months I’m left only with the wish/hope that at next year’s worldwide neurological convention there will be agreement among all these scientists of guessing that using Enbrel can truly help the neurological recovery of an injured brain. Only 5 more months…..




Friday, September 20, 2013

MY STRENGTH OF CARACHTER

I’m told by many that what I say in writing here in my blog gives inspiration to “hang tough” in many situations on a daily basis because very often when things don’t seem to go in the right way many of my readers here think of me and of all the wrongs that keep happening to me that they decide that what they see as wrong to them isn’t too bad when compared to me and therefore they can soon overcome their sense of discomfort and by keeping on working and trying even harder they can overcome whatever it is that’s giving problems to them and make them feel like losers in what they are doing.

The priest who actually brings communion to me where I’m imprisoned every Sunday told me recently that what I write in my blog even inspires him and that maybe this is the mission in my life that God gave for me to fulfill.

While I can be glad to have a group of followers who take inspiration from my tragedies through this blog, I hope that it’s very clear to everyone that I never asked to receive such a challenge in my life, I actually think that I did have my share of real challenges in life already, that – given that I passed them all – I really never asked nor needed this tough/bad one.

I mean, I surely do appreciate what Fr. Blanco told me about my tragedy but I believe that he said so, simply to encourage me to support such misery that only someone blind can’t see.

What’s absolutely sure without any doubt however is that my God given strength of character will help me pass and forget all about this additional test for sure.