I have been taught that cosmos is synonymous with order and structure in the Universe. Chaos is the opposite. Everything in the Universe tends to breakdown from order and structure to chaos. I believe this is called entropy. We, as sentient beings, love order and abhor chaos. Where there are no patterns, we invent them. When things are falling apart, we try to build them back up. Chaos in the Universe may eventually be inevitable, but in our puny ways, we try to put up a good fight.
Where did all of THIS come from? This waxing philosophical nonsense does not fit with the topic of vision loss…or does it?
Lin texted me when I was in Zumba Strong. Zumba Strong is a combination of calisthenics, weight lifting, kick boxing and whatever else the instructor wants to throw in. The instructor at our Y is about 26 years younger than I am and takes no prisoners. I fumble along the best I can. WHAT do I think I am doing in that class?
Quite simply, I am fighting the inevitable. I am fighting physical decline and chaos.
Don’t worry. I don’t expect to ‘win’. Someday I will become feeble and pass away. Just not today or not tomorrow either.
We all have our versions of my exercise classes. We eat our vegetables and take our medications. We clean our houses and organize our closets. We do what we can to stave off chaos. That is what we do. We all try to delay the inevitable loss of order in the Universe.
So NOW will I tell you what her text said? Ok. What it said was the group has a member who does not see the point of a drug like APL-2 (Pegcetacoplan), the drug I am getting in the clinical trial. That sort of drug won’t cure AMD. It will only put off the inevitable of “going blind” as the member described it.
I saw this text as I was sweating my sweet patootie off in exercise class. It made me laugh because I immediately saw the parallels. I not only exercise because – being human – I am not a big fan of chaos (no matter what my house looks like!), but also because I like the results. My body is not falling apart as fast as it would without the exercise. I see that as a good thing.
Being more physically capable allows me to enjoy life longer and more fully. Every day of physical health is a day I can savor and not have to worry about. I might not have more days because I am physically active, but I will have more good days. I will have more days I can function and maintain my independence. This is important to me.
I see a drug like APL-2 in the same light as exercise.
A slower deterioration of my vision will allow more good days. More fun. More independence. More of everything that sight allows.
And a final note about the inevitability of “going blind.” Simply put, it ain’t necessarily so. Not only does AMD generally not lead to total blindness, but in this day and age, it might not lead to inevitable, permanent sight loss at all!
You see, when it comes to vision loss – ‘blindness’ – I am not just buying a few, more, good days, I am waiting for the cavalry to come.
I am buying times for the rescue party to be organized. In my mind, unlike death and chaos, blindness is not inevitable.
Of course, I am not just waiting for that rescue party, I have gone out to meet it. Quite frankly, I want to be one of the first ones rescued. That is why, about four years ago, I got into a clinical trial.
You see, I have a plan. It is probably a ten-year plan, maybe longer, but I can wait.
The first phase is over. I completed three years in a phase 3 clinical trial for APL-2. now I am in a long-term trial to check both safety and efficacy over time. The drug has recently been submitted to the FDA and, if approved, there might soon be millions of people slowing the progression of their AMD with its use.
The next part of my plan is the slightly diabolical part. I am betting stem cell replacement for RPEs is coming soon. You cannot have millions of people on a drug that will not allow them to progress to the next level of treatment. You have to check it out. I want to be in that study. And after that, I want to be part of the study that replaces photoreceptors. Science is not there yet, but it will be. Reasonably soon.
To sum up, fighting decay, entropy and chaos is part of being human. We do it everyday, not perhaps, to win in the end, but to delay and survive a little longer. We delay because every moment of good functioning in life is a priceless gift.
And, as Benjamin Franklin said, the only sure things in life are death and taxes. I do not believe blindness should be added to that list.
Even if APL-2 will not stop this condition, it will buy time for the cavalry to get here. My money is on medical science. I believe they will – in time – come through with a real cure.
If you’ve watched videos or listened to music online, you may recognize the dark triangle pointing to the right at the beginning of this audio bar. This is the ‘play’ button. Select it and the audio will start to play. You will see how long it is. Most of them are under 5 minutes.
If you want to pause the audio, choose this symbol. When you do, you’ll see the ‘play’ symbol again. Every time you choose, you get the previous symbol, so if you choose the symbol 4 times, you will see ‘play’, ‘pause’, ‘play’, ‘pause.’ This is often referred to as ‘toggling.’
As the audio plays, you will see the symbol of a speaker at the end of the solid bar. Choose it and you can adjust the volume. You will see a solid dot to the left of the speaker symbol. This is called a ‘slider’ because you can slide that dot to the right and left. For full volume, the dot should be all the way on the right. When you slide it to the left, it decreases the volume.
If you choose the speaker again, it will turn to the symbol of a speaker with a slash over it which means the volume has been muted/silenced. Every time you choose the speaker symbol, you’ll toggle between volume and mute.
At the very end of the audio bar line you will see 3 dots stacked vertically. Choose it and you will see the word ‘download’ so choose it. Depending on what device you are using, you’ll be asked where to save it.
