I'll answer, too, because honestly, I do think about it. I've been down this road with heart failure and remember being told that dying of congestive heart failure was like a slow drowning. Happy thought, huh?
I think of this just like I think of writing a will, or signing an advanced directive. I think we should all plan for the worst but hope for the very best.
So, anyway, I'm good at distracting myself until late at night. Something about the darkness and quiet. Neither does it help that my uncle died so recently in hospice. Although I would try to keep hope as long as humanly possible. I wonder how close they are to finding a cure or a better treatment?
I guess I would like to think I would be strong for my family. I would want to look for every way to slow the progression (another reason I would like an early diagnosis if it were to be ALS, although it's just PNS). I would ask for every way possible to slow things down.
Then I would hang out with my family as much as possible. I would put together scrap books and when calm enough, write letters, record my voice, etc. for later.
I would try to have as cheerful an attitude as possible, even though, again having been there, I know I would need to go through stages. I would try not to ask why me. Because, after all, why not me. I would try not to blame myself or anything else...and I would try not to have pity parties and if I did, I would go to counseling to help deal with it. I would encourage my family to go to counseling.
Just curious if you all think of this and if so, what would you do?
A professor stood before his philosophy class and had some items in front of him. When the class began, he wordlessly picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was.
The professor then picked up a box of pebbles and poured them into the jar he shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was.
The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with a unanimous 'yes.'
The professor then produced two cups of coffee from under the table and poured the entire contents into the jar effectively filling the empty space between the sand.
The students laughed.
'Now,' said the professor as the laughter subsided, 'I want you to recognize that this jar represents your life. The golf balls are the important things---your family, your children, your health, your friends and your favorite passions---and if everything else was lost and only they remained, your life would still be full.
The pebbles are the other things that matter like your job, your house and your car.
The sand is everything else---the small stuff. 'If you put the sand into the jar first,' he continued, 'there is no room for the pebbles or the golf balls. The same goes for life. If you spend all your time and energy on the small stuff you will never have room for the things that are important to you.
'Pay attention to the things that are critical to your happiness. Spend time with your children. Spend time with your parents. Visit with grandparents. Take time to get medical checkups. Take your spouse out to dinner. Play another 18. There will always be time to clean the house and fix the disposal. Take care of the golf balls first---the things that really matter. Set your priorities. The rest is just sand.'
One of the students raised her hand and inquired what the coffee represented. The professor smiled and said, 'I'm glad you asked.'
The coffee just shows you that no matter how full your life may seem, there's always room for a couple of cups of coffee with a friend.'
Actually being a Caretaker and traveled this disease first hand, I would plan my steps before the disease progressed.
After educating myself, would take the necessary steps for preparation of my future journey with ALS. This may be the only advantage to this horrible disease, you can prepare your future somewhat before it robs your ability to use your muscles in your body.
Than, I would take each day as if it were my last, enjoy my family and friends to the fullest.
Last but not lest, I would travel to the Whitehouse to inform every known soul there how horrible this theft (ALS) is and try to educate every one possible that a cure needs to be found today! It is ridiculous to allow another human to travel another year with ALS in this day of technology.
God be with each of us to find the strength and wisdom for a cure today!
Hugs & Prayers,
Sorry to psychoanalyze this, but a fear of ALS seems to often be a great cover for deeper fears (fear of failure, fear of commitment?) and anxieties.