I want to continue on the post from Anonymous, this hope for a (sic) "miricle". What if a miracle happens? What if I woke up today and was suddenly cured, free of this disease? It's not likely, but what if? Well... it would be wonderful.
I don't really think that way; I am far too pragmatic a person to see life in terms of the extremely unlikely, far too realistic about what can happen and how likely it is to happen. In my work life I would manage risk by looking at both the impact of an event, in this case very high, and the probability of an event, in this case very low. The likelihood of this miracle is so low that it would be simply a waste of emotional effort to focus on it for more than a micro-moment.
I also think about all the other people with ALS. Don't they deserve a miracle too? What about the 27 year old single mother of two, struggling to know her small children before she dies? What about the 16 year old boy in Japan facing the reality that he will almost certainly never grow to have a family, experience a career, see the world? What about the many men and women around the world whom I have met online, suffering from this awful illness? Don't these people deserve a miracle more than me?
If you really want to pray for a miracle, pray for the miracle of modern medical science. Pray that the hard working researchers, doctors, nurses, technicians and specialists can somehow stumble across the cause of this disease or create a wonder drug to slow, maybe even stop, the progression of this disease. Pray for funding, investment, support networks. Say a prayer of thanks for what we have now and the support system that is in place. Then put your money where your mouth is and make a donation.
Every morning I get up and pray, momentarily, for a miracle for me. Yet this prayer is really not the one that fills my day.The miracle I pray for is a miracle that serves all ALS patients, a miracle that helps not just me but every person afflicted with this dreadful disease, this pernicious pestilence. Then I go on to pray for the more immediate things. I pray that I can get up; some days this is not so easy. I pray that I can make it to the bathroom, disrobe and get to the toilet before it's too late; some days are good, others not so much. I pray that I have a good day, that something nice happens. I pray that someone will come into my life and share what remains of it with me.
There are lots of other things I pray for, and lots of other people praying for me. Mostly, I just pray for the grace and dignity to get through today; I pray for the now, not the never. Living another day, supported, cared for, helped; this is the real miracle.
I will make my donation when Peter has his run Richard. Does that work for you?
ReplyDeletelove
Mom
Boy Richard, you are not an easy person to encourage. But let's try again on the pragmatic side of you then. Here are some recent advancements on stem cell research that I heard about on the radio and the news. I found them on the internet for you. There is always hope. Take care.
ReplyDeleteBrain cells created from human skin cells offer potential MS treatment
http://www.gizmag.com/human-induced-pluripotent-stem-cell-ms-treatment/26211/
Stunning Recovery for First Child to Get Stem Cell Trachea
http://abcnews.go.com/Health/stunning-recovery-child-stem-cell-trachea/story?id=16858771
I have been doing a lot of research on the stem cell stuff; much of that work is happening in Europe and Israel. So far there hasn't been a lot of success on the ALS front. I also spoke to my doctor about statins and ALS as well as some other potential ALS treatments. As you might expect, most North American neurologists are skeptical of anything that isn't "mainstream".
ReplyDeleteIn the online forums for ALS patients, particularly in Patients Like Me, you can find a lot of information, and some very sad stories, about various dietary, drug and holistic treatments. None have proven to be consistently valuable.
I am also working to participate in some of the drug studies being done here in Canada. Reading the research is heavy and often devastating work. There is always hope however I am going to live for today and hope for tomorrow.
MS and ALS have many similarities. The "Brain cells created from human skin cells offer potential MS treatment" was done in North America, University of Rochester Medical Center, NY.
ReplyDeleteHi Anonymous.
ReplyDeleteI know you are trying to be helpful and I appreciate that. However it is important to understand the difference between ALS and MS. The work in the US on brain cells has to do with the myelin (fatty coating) covering the nerves. ALS, on the other hand, is a result of motor neuron degeneration.
While there is some neuron loss in MS, it is primarily the myelin that is attacked. This slows down or disrupts transmission of nerve signals. Remyelination often occurs, leading to scarring, after which function may be restored to some extent, although often leaving residual symptoms. In MS, pretty much any nerve in the central nervous system can be affected, so the range of symptoms of MS is vast.
In contrast, in ALS typically the nerves controlling voluntary muscle movement are involved, so symptoms usually involve weakening of the arms and legs, trouble swallowing, speaking and breathing (breathing is considered a voluntary muscle action, even though we do it subconsciously).
The disease course in ALS is usually very predictable, characterized by a steady decline and worsening of symptoms. By contrast, there are four different types of MS, which are very different in terms of progression and presentation -– some progress steadily, while other types are characterized by relapses and periods of remission. Within each type of MS, there is also a very broad spectrum of severity of symptoms and levels of disability.
Or, as someone with MS said to me, "ALS is like MS on speed, only worse."
False hope is the worst kind.
ReplyDeleteI hope I am not annoying you. It doesn't make sense to me. How can any hope be false hope? Needing Hope implies the situation has low probability or high uncertainty of success. High probability of success implies near certainty, not needing much hope at all. I am not saying to put all your hope into anything. All I am saying is there is hope, both for eternity and for temporal phyical life. A person who buys one lotto max ticket has 1-in-28,000,000 chance of winning the jackpot, which is astonomical, but they have hope. People who don't even buy one ticket has NO hope of ever winning. While 1-in-28,000,000 seems astonomical, it is infinately more or better than zero. It would not make sense to buy 28,000,000 tickets just to ensure a win, which is crazy. But if you only buy 2 tickets, the probability improves from 1-in-28,000,000 to 1-in-14,000,000. I am not promoting the purchase of lotto tickets, just trying to make a point.
ReplyDeleteUnfortunately your lottery ticket example is incorrect from a mathematical perspective. When you buy one lottery ticket, your odds are 1 in 28,000,000. When you buy two, your odds are 2 in 28,000,000 which, from a statistical perspective, is very different than 1 in 14,000,000.
ReplyDeleteTo understand this mathematical and statistical concept, you must look at the inverse principal. When you buy a lottery ticket, your odds are 27,999,999 that you will lose. When you buy two, your odds are 27,999,998 that you will lose. Do some percentage statistical calculations on that and you will find that buying two lottery tickets is little better than buying one.
As to hope, it would be unwise to hope that a cure for MS would apply to a different disease like ALS. I would prefer to see you donate to ALS research as opposed to MS research. That way the research is into the disease I have, not a different disease. (Selfish of me, I know.) It's like saying we should invest in cancer research because it might cure TB; both involve lung diseases.
Finally, as to hope, I have lots of it, just as I have lots of faith and reason. Hope without reason is as pointless as faith without reason. A fideist I am not. I have hope because of the money invested in research. I also know a lot about the research process, drug testing and medical miracles. They happen, but more often it is a long, slow process.
If I am going to keep my spirits up, hoping without reason is not the way to do it. I must have reason to hope, and that reason, just as my faith, must be based on as much reality as possible.
Believing desperately in something, wishing fervently for it, hoping endlessly that it will come; all these things take energy that I would prefer to place in living well for as long as I can.
I am not suggesting to hope endlessly. I am only trying to encourage you to have the hope of 2 tickets instead of 1, figuratively speaking.
ReplyDeleteThe lotto ticket example above is correct. I even have the formula to prove it, but won't waste time. The actual probility of any one set of 7 numbers out of 49 in a lotto max draw is 1-in-85,900,584. Because there are 3 sets of number per ticket, the probability of one ticket winning the jackpot is 3-in-85,900,584, the same as 1-in-28,633,528 (this is their advertised odds). Therefore, 2 tickets having a total of 6 sets of numbers is 6-in-85,900,584, which is the same as 1-in-14,316,764.
Again, I am not promoting the purchase of lotto tickets. I am trying to encourage you to have the hope of 2 tickets instead of just 1, figuratively speaking.
I also encourage you to live well and get the most out of life.
In regards to reasons, you have so many. Every person in your life cheering for you are reasons to hope.
By the way, the probability of the neurologists being wrong is 1-in-100, not 14 million.
Take care.
Let's see if we can find common agreement. You want me to be hopeful; I am. You want me to see reasons to live; I can. As to the neurologist, the odds lessen each day as the symptoms become more evident.
ReplyDeleteDon't ever misunderstand. I am sharing the lows as well as the highs of this journey. I am sharing my true feelings, the real experience. This is what it is.
Yes, I do appreciate your openness and honesty. Thanks for shareing.
ReplyDelete