RankFamily Archives: August 2003
Joe and Linda have provided the tutorial that opens the world of "blog" to me. It is going to be SO cool to know that everyone will be hanging on every word from me!!! Next job is to get the Rusty and Grace Family picture and blurb up - do you want this picture mounted?...Grace
Posted by grace @ 06:03 PM CST
Well, Jeff and Nicole are now officially moved and we (Rank4 Fam) are safely back home. Out of the way of now tropical storm Grace. With a name like that I can't believe that this storm would do anything more dangerous than move ashore, invite everyone over for dinner, and ask a bunch of personal health questions. We shall see.
Jeff and Nicloe, thanks again for the water sprinkler and the wind chime. The chime now hangs in a tree, the delightful fragrance of burnt WD-40 and extra crispy wasp carcases wafting in the wind. The wasp stings are starting to fade and the wasps are burning in hell asking themselves what they were thinking when they screwed with the wrong Sicilian.
The sprinkler is aimed directly at the chime, because the wind wasn't making it ring LOUD enough.
Thank you also for the fine mexican dinner, I will spare you the update as to where that now currently resides.
Except for not being able to bingo over to Austin as planned, it was a nice and productive trip.
Love
JohnPosted by john @ 03:33 PM CST
Thanks to Linda for the quick response on the meds list. However, there are some errors in that response.
Sundown and Nature-Made are sometimes the only choices in HEB or Walgreens, and they're almost always the cheapest. However, the purity and quality aren't always the best. For instance, I buy Twinlab Super E Complex (1000 IU) whenever I can, because it includes the gamma Tocopherol as well as the alpha. Some researchers have hypothesized that gamma helps protect against certain kinds of oxidative stress, which, as you probably know, is thought to be one of the active mechanisms in motor neuron death in ALS. Also, the Twinlab "Twin-sorb" CoQ-10 product is purported to absorb 9 times better than standard CoQ-10. Absorption is thought to be a chokepoint in the effectiveness of CoQ-10 as a supplement for ALSers.
I'm not suggesting that you go out and buy Twinlab stuff, or any stuff. I just didn't want to leave the impression that we insist on Sundown or Nature-Made. If there's a sale on CoQ-10 at Walgreens, I'd be grateful for a single bottle of anything. Many weeks I have gone without because it just wasn't in our budget, and having meds to take is the important thing. Which brand they are is a distant second.
Anyway, on to more corrections:
Vitamin C does not have to be Ester C, and I take 1000 mg 3x per day. It does have to be capsules, because the tablest get stuck in my craw.
I don't believe that melatonin comes in gelcaps, and I take 5 micrograms(mcg) at bedtime, not milligrams(mg). The pharmacist would've probably told you that they don't sell melatonin in mg doses had you asked. BTW, if you need an effective sleep aid that good for you, eat some melatonin. But only at the microgram dosage. ;-)
I think that about covers it for the OTC meds.
I've been up and down over the past two weeks. I caught up on some sleep this past weekend, and man, that makes such a difference. My stamina, attitude, speech, swallowing, ... you name it. Everything goes better when I'm rested. And I really think that it takes me about a week to recover from an outing like Jeff and I had down in Corpus. We went wade fishing in two spots, and I loved every minute of it, but I am noticing a trend with my recovery curve when I do things like that--it spans multiple days. Same thing with the offshore trip in July. So I'll have to factor that into the mix. The mix-ee-izzle. I am not really noticing any marked progress in any muscle group. (Linda may disagree.) Every muscle group is experiencing symptom creep that just kind of inches along, insinuating advancement rather than showing it. I do everything I can to fortify my defenses while I wait for medical science to pony up the cure. The cure-ee-izzle. My job is to sit tight and keep my ship afloat till the Coast Guard arrives, in the form of stem cell therapy, conventional pharmaceuticals, some mixture of the two, or something new out of left field. Will I win? Yes. I will be alive to sell all the equipment we're buying for me. I will get my speech back (though I may not let anyone know it). I will skate again and climb again and scuba dive again and be there for my wonderful children and my beautiful wife. I will have a firm handshake again. I will not cave in. I will not bend over and "accept my fate". I will not let anger, frustration, resentment, bitterness, shame, or sorrow dominate me. I will not slip out of the lives of the people around me with equanimity and dispassion. I will not stand at the helm of this sinking ship with ceremonial stoicism, but rather I will bail water like a person who believes that it will save his life. I will cheat this disease out of a victim. I will use the existing resources around me to maximize my advantage while I discover and utilize new resources. Will I win? Yes, but not alone.
Posted by joe @ 04:39 PM CST
I know that everyone stated a desire to know how Joe was doing. I thought I would add to that to fill you in on how the kids are doing. Cole has been having a hard time the past two weeks. He has been crying at bedtime over things he wishes that he had done differently with his dad and feels quilty for not doing them when he had the chance to. He feels concerned about what his friends will think about his dad and I think there is a lot of quilt over that normal feeling too. His main fears are about Joe losing more abilities and body changes. The continued loss of his speaking ability has brought home to Cole that this is really happening to his dad. Joe, Cole and I brainstormed about things that they could do together so they could continue to build a strong relationship.
Hannah has been noticing some changes and made some comments, but doesn't seem to have as much anxiety as Cole. She is sad, however and doesn't want to talk to Joe about any of this so she won't make him sad. Her very sweet words one day were "poor daddy".
We are pulling together here in Austin and effective communication is not being limited by speech difficulties.
Posted by linda @ 10:09 AM CST
Grape Seed Extract 1 time day 60 Capsules (Sundown-HEB, Nature Made-Walgreens)
Vitamin E 1000 IU three times a day 100 Softgels (Sundown-HEB, Nature Made-Walgreens)
CoQ-10 100mg twice a day (only Sundown at HEB has vitamin E for proper absorbtion)
Vitamin C Ester C only Capsules 100mg three times a day
Beta Carotene 25,000 IU twice a day
Melationin 3 mg before bedtime gel caps
NAC 600 mg
Alpha Lipoic Acid 100 mg
Zinc 30-50 mg
B 50 (Sundown or Nature Made)
Flaxseed comes in a bottle at HEB or health food stores
LycopeneAt this time, meds need to be in capsule form or gel form. Powdery round tablets are difficult to swallow. If swallowing pills becomes an issue later, powdery pills can be crushed and diluted with liquid to be delivered in a feeding tube.
Posted by linda @ 09:40 AM CST
Ah, nature's fury. It is as dependable as the absence of fish on our fishing trips. Once again, we're heading down to Corpus Christi, and the weather is supposed to be such that it precludes most all outside activities, except evacuation. That's ok. Who wants to see the Gulf, anyway? It's all cluttered with flora and fauna, there's all that natural beauty all over everything, and you can't swing a dead cat without hitting a lungful of fresh air. Gulf schmulf. Fishing schmishing.
No, you're right. I'm being defeatist. How can I claim to be worthy of enjoying the bounty of Mustang Island if I'm not willing to risk my life pursuing it? The vision is firming up in my head right now: Jeff, Dad, John, Joe, and John Austin (too many) in the Boston Whaler (too small) heading into the Cabbage Patch at the end of the Port Aransas ship channel.
In a hurricane.
Of course, we'll have so many coolers that some of us will have to hold them on our laps, unfettered fishing tackle flying through the area like some nightmarish tetherball game, and the inevitable engine problems that our 30 hp Johnson will provide just as soon as we're undeniably out of range of any shore-bound alternatives. Add to this 6-12 ft. swells, 70+ mph winds, and the iron clad resolve of the boat captain to to through with it (irrespective of the tearful pleas of his crew), and I think we will have earned the right to a few fish.
Yes, the reason we've had such poor luck is our candy-assed attitudes about facing and embracing nature in all her temperments; sunny and calm to category 1. And I have a good feeling that, if we atone for our past weakness by forcing the issue this weekend, if we return at all, we'll return with a full stringer of fish.
Posted by joe @ 01:06 PM CST
What is hope?
Hope is a moment.
A singularity when elements in the universe harmonize and align in a synergy that produces something entirely new. Something that wasn't there before. In the black vacume of dispair, hope shines. Hope is not just waiting for this moment, hope is having the faith to believe this moment will exist.
Hope is not without cause, each of us contribute in some way. Our acts, in chorus with events both in and out of our influence, determine hope. Hope must be imagined, hope can always be imagined. Then it can be concieved, created, nurtured. And believed. Hope can grow, hope can be a cure, a year or another moment. Hope can be a seedling, a child, or a reasoned solution. Hope can live and thrive, it can support us as we support it.
But hope can also be starved, and dashed, and even completely lost. Hope can be lonely. Hope can be painful. Hope can be desperate.
Yet true hope never dies. As long as there is a vision of a singularity that can change momentum with its impact, there will always be hope.Posted by john @ 01:44 PM CST
This is a quick update to let you know how Joe is faring. This has been a mixed week; physically, it's been pretty good, but attitudinally, it's been cloudy. As you all know, I was ill with diverticulitis a couple of weeks ago, and that just wrecks me. It always seems to accelerate my symptoms, (speech, especially) and rudely reminds me that, yes, things *CAN* actually be worse (than just having ALS). What I've needed most was good, healing sleep, but since we've had Linda's car in the shop all week, I've been way out of my normal schedule. Getting up at 6:45 AM is unusual for me, and trying to get the graphics and pages done for the website has kept me up late many nights. But the good news is that I've caught up on the sleep some this weekend, and I noticed a lot of improvement in my speech today, and some more overall energy. One goofy thing about this disease is that you almost always feel like you've been up for 20 hours. Not all the time, but most of the time. And that's not so bad, actually, because every time you sit down, it feels like that first sweet plop-down in a comfy chair after coming off a double shift. We've been over-schedule at work for more than a week, but we finally froze the code on Friday. Now that some of the pressure's off at work, and I'm feeling more myself, I expect a sunnier week. If I can just keep my bowels in line...
Posted by joe @ 08:42 PM CST
This is the initial entry for the rankfamily.com web log, or "blog". The entire rank family will be included as authors, though I've set it up only to allow a few so far.
Posted by joe @ 07:42 PM CST