Well, I'm still in recovery mode from my last failed attempt at trying a new MS med. For all of those who have inquired, no, the medication was not Tecfidera, so if you have recently started the drug, no cause for alarm. The med I tried is not used all that often to treat MS, and I had a very atypical reaction to it (naturally). I'll provide full details in my next post, which I will put up as soon as I'm feeling better. Just a teaser to keep you interested: the drug costs $150,000 for a three-week supply, and I was only able to use about one week's worth. So, I have about $100,000 sitting in my refrigerator, just taking up space and doing nothing to help anybody. Way to go, Medical Industrial Complex!
In the meantime, I'm reposting the following piece, which first appeared on Wheelchair Kamikaze way back in 2009. It generated lots of comments back then, and I hope current WK readers find it just as interesting. Please stay tuned for a new post, coming just as soon as I'm feeling up to it…
For the last few days, I've been pondering a thought exercise that recently popped into my mind. Imagine, for a moment, that an almost miraculous cure for MS has been discovered, one that can alleviate all MS symptoms with a single injection. A patient simply has to go to their doctor's office, get the shot, and, voilà, 24 hours later they are completely symptom-free, their nervous systems restored to pristine condition and their general state of well-being suddenly better than even before they were diagnosed with Multiple Sclerosis.
Great, right? Sign me up!
Only, there's a catch. This "cure" comes with a terrible cost: after a certain amount of time, every patient treated with this injection dies painlessly in their sleep. In the "X" amount of time before they die, the patient remains in the full bloom of health, right up until the night they go to bed for the final time. The question, then, is what would be the minimum duration of guaranteed health that would entice you to take the shot? In other words, would being restored to perfect health be worth it to you if you knew with utter certainty that you would die in six months? One year? Five years? 10 years?
Would you be willing to trade a full life of chronic illness for a blissful time during which you would be completely unshackled by the chains of Multiple Sclerosis? For a time free of fatigue and cognitive dysfunction, of muscle spasms, spasticity and paralysis , of bladder and bowel issues, of the constant daily struggle of dealing with the rigors of this miserable disease? An interval during which you'd have no reason to even think about braces and canes and walkers and wheelchairs and MRIs and neurologists and lesions and a medicine chest full of pills that hardly even seem to matter? When you could walk and run and dance (dance!), drive and play and travel, and finally, finally, once again be that fully functional man or woman that you used to be, that you've dreamed of being since the day MS started taking its dreadful toll?
How many months or years of restored health would be enough to entice you to undergo a simple but profoundly effective treatment that carried with it the ultimate price? Of course, the answer must differ for each of us, based on our own current state of disability, our rate of progression, the level of our misery, and the amount of hope we have that a cure, or even a truly effective treatment, can be found in time to help us. The flavor of the disease a patient suffers from also enters into the calculus . Folks with relapsing remitting disease that is currently being managed effectively by disease modifying drugs might reject such a proposition out right, while patients with progressive disease, especially advanced progressive disease, would probably be much more open to trading longevity for a period of perfect health.
Certainly, marital status and family situations factor greatly into the equation. Single people, or those without children, might be more willing to sacrifice longevity for a chance, though brief, to be healthy once again. For those who are married, and especially those with children, the calculus gets infinitely more complicated. How much time with a healthy parent would it be worth for a child to then lose that parent? Difficult questions all, and ones I think reach to the very core of our beings.
Personally, after much thought, I think I'd put my "X" at somewhere around a year or a year and a half. If a physician approached me with a syringe, and told me that the injection would guarantee me 12 months of perfect health, but at the end of that 12 months, I would die painlessly in my sleep, I would give the offer serious consideration. Of course, I'd want more time, all the time in the universe, but this thought exercise requires that we consider the absolute minimum amount of time we would settle for.
One year would give me time enough to experience all of those pleasures in life that I now miss so terribly, to travel to the places my wife and I have always wanted to see together, and to spend time with those who I hold closest to my heart. I don't have children, so that's not a consideration. I do have hope that stem cells offer real promise as a treatment, but I'm unsure that this promise will be fulfilled in time to help me. I have my doubts about many of the avenues currently being explored by MS researchers, and though strides are being made, I'm uncertain that the mysteries of MS will be fully unraveled anytime soon, and given my rate of progression, soon is the only timeframe that really matters to me. In addition, there is now question as to whether what I have is even really MS, and what chance is there that some mystery illness will be solved before it puts me into a state I deem to be simply unbearable?
So what about you, dear reader? What's the minimum amount of time for which you'd be willing to trade your life for perfect health? What's your "X"?