Quest for Fire was a movie, circa 1978 - 1981, that told the epic story of the earliest neanderthal's quest to find flame. Early man had not figured out how to create fire yet, it had to be "found".
My Quest for Fire is a little different. I'm trying to ignite a spark, rekindle a flame, that has been burned out. We're talking nerve damage, impulses cut off from the muscle, the muscle withers and dies. We must ignite a spark within that shredded nervous system, create a flame that burns a new pathway...a bridge of life. But how?
Whenever I prepare for battle with this disease there's a little voice always whispering, "You fool, you have no chance. Your a delusional Don Quixote chasing windmills. There is no hope!"
To that I say...it would'nt be the first time.
My belief is that there is only one way to fight this disease...this aggressive, progressive MS that takes from you bit by bit like a piranha chasing it's prey. You have to take a lesson from an ancient battle:
"They were outnumbered 10 to 1, completely surrounded, weary and wounded, on the verge of total defeat. The King ordered a full out attack, what was left of his army attacked with a victory or death fury. After a ferocious assault, the King quickly regrouped his forces and launched another furious attack and then another. The opposing army became unnerved by the relentless ferocity of the attacks from an army that was on the brink of total annihilation. The opposing army fled in retreat." True story although the details escape me.
My plan is to assault my central nervous system, through intense physical therapy, hammering those burned out connections over and over again until a spark is created or the connection is blown out completely. I have been working with two physical therapists with a combined experience of 50 + years. I have been working with them for 3 months now. By strengthening my body, especially my core...and with the help of a couple of small assistance devices, a 24" x 8" sliding board and small rope ladder, I can now get myself in and out of bed with absolutely no human assistance and I can get in and out of a car. As long as I have the capability to exercise hard, and I still do, I will use it. Thank God I can still stand on my own and my right arm is strong.
This, however, is only half the equation. I could relentlessly work out 7 days a week but until the progression of the disease slows down or stops...it is a futile effort. Imagine pulling on a tightly wound lawnmower rope over and over again, until you drop from exhaustion. The engine won't start if the internal combustion mechanisms are corroded and broken.
The second half of the equation is treatment, serious disease modification drugs that are intended to slow progression by reducing inflammatory episodes or seriously weakening the immune system. To that end, my quest has been going on for years:
Two years seeing an MS Specialist neurologist at a well regarded clinic. He said treatment would be more harmful than helpful.
One year finding another neurologist, who after all the testing was done said that the advanced, rapid progressing nature of my MS was beyond his experience...not comfortable recommending treatment.
Another full year finding another MS Specialist Neurologist, who I finally saw this June. After looking at all the MRI results that had discouraged all the others, she still talked treatment... but let's take some more MRI's first and more blood work.
An appointment was set for August 5th to review the latest results and discuss treatment options (Tysabri / Gilenya). On Aug. 1st, the appointment was unscheduled due to closing of their Scottsdale office. Patients would have to be rescheduled to the Phoenix location. A full week went by...no call.
I finally called last Friday and the girl I talked to was very surprised the appt. was not rescheduled...she tried to reach another nursing assistant but was unable to. She was going to leave an urgent message and I would be contacted shortly. No call came later on Friday...to say my confidence is shaken would be an understatement. This is the point where things always hit a wall. If for some reason this falls through it would mean at least another 6-9 months before treatment, if not longer.
Quite frankly, it's "do or die" time. I need to start treatment soon. I need to slow down the progression just enough for the physical therapy to gain a foothold, get ahead of the disease progression. If not, barring a miracle, at the current rate of progression over the past 5 years I will have two...three years at most as a functional human being. Game Over!
My Quest for Fire is a little different. I'm trying to ignite a spark, rekindle a flame, that has been burned out. We're talking nerve damage, impulses cut off from the muscle, the muscle withers and dies. We must ignite a spark within that shredded nervous system, create a flame that burns a new pathway...a bridge of life. But how?
Whenever I prepare for battle with this disease there's a little voice always whispering, "You fool, you have no chance. Your a delusional Don Quixote chasing windmills. There is no hope!"
To that I say...it would'nt be the first time.
My belief is that there is only one way to fight this disease...this aggressive, progressive MS that takes from you bit by bit like a piranha chasing it's prey. You have to take a lesson from an ancient battle:
"They were outnumbered 10 to 1, completely surrounded, weary and wounded, on the verge of total defeat. The King ordered a full out attack, what was left of his army attacked with a victory or death fury. After a ferocious assault, the King quickly regrouped his forces and launched another furious attack and then another. The opposing army became unnerved by the relentless ferocity of the attacks from an army that was on the brink of total annihilation. The opposing army fled in retreat." True story although the details escape me.
My plan is to assault my central nervous system, through intense physical therapy, hammering those burned out connections over and over again until a spark is created or the connection is blown out completely. I have been working with two physical therapists with a combined experience of 50 + years. I have been working with them for 3 months now. By strengthening my body, especially my core...and with the help of a couple of small assistance devices, a 24" x 8" sliding board and small rope ladder, I can now get myself in and out of bed with absolutely no human assistance and I can get in and out of a car. As long as I have the capability to exercise hard, and I still do, I will use it. Thank God I can still stand on my own and my right arm is strong.
This, however, is only half the equation. I could relentlessly work out 7 days a week but until the progression of the disease slows down or stops...it is a futile effort. Imagine pulling on a tightly wound lawnmower rope over and over again, until you drop from exhaustion. The engine won't start if the internal combustion mechanisms are corroded and broken.
The second half of the equation is treatment, serious disease modification drugs that are intended to slow progression by reducing inflammatory episodes or seriously weakening the immune system. To that end, my quest has been going on for years:
Two years seeing an MS Specialist neurologist at a well regarded clinic. He said treatment would be more harmful than helpful.
One year finding another neurologist, who after all the testing was done said that the advanced, rapid progressing nature of my MS was beyond his experience...not comfortable recommending treatment.
Another full year finding another MS Specialist Neurologist, who I finally saw this June. After looking at all the MRI results that had discouraged all the others, she still talked treatment... but let's take some more MRI's first and more blood work.
An appointment was set for August 5th to review the latest results and discuss treatment options (Tysabri / Gilenya). On Aug. 1st, the appointment was unscheduled due to closing of their Scottsdale office. Patients would have to be rescheduled to the Phoenix location. A full week went by...no call.
I finally called last Friday and the girl I talked to was very surprised the appt. was not rescheduled...she tried to reach another nursing assistant but was unable to. She was going to leave an urgent message and I would be contacted shortly. No call came later on Friday...to say my confidence is shaken would be an understatement. This is the point where things always hit a wall. If for some reason this falls through it would mean at least another 6-9 months before treatment, if not longer.
Quite frankly, it's "do or die" time. I need to start treatment soon. I need to slow down the progression just enough for the physical therapy to gain a foothold, get ahead of the disease progression. If not, barring a miracle, at the current rate of progression over the past 5 years I will have two...three years at most as a functional human being. Game Over!
We need to throw out that term.
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