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Posted: Mon Aug 31, 2009 12:07 pm
by notasperfectasyou
Lyon wrote:notasperfectasyou wrote:I can only speculate that you've made some sort of decision to only pursue things that have made it to the trial stage. Do I have that right?
Hi Ken,
Despite the fact that the increased incidence of immune dysfunction among the "developed" populations had been an obsession of mine long before Jamie was diagnosed with MS, I'd be lying to say that we really have a pre-set game plan that we're comfortable with.
In my wife's case, she's comfortable getting her MS "news" from me because it honestly seems that MS is something she spends zero time considering on her own. Luckily, to this point the monster has allowed her to ignore it.
I suppose what drove us to the Tovaxin clinical trial was that in the months previous my wife's neuro had temporarily pulled her off Rebif due to high liver enzymes. When she was given the OK to go back on Rebif, she didn't and it was obvious that she had no intention of returning to pincushion status. She didn't complain about it when she was on Rebif but when I pressed her to get back on it she complained that it made her feel like crap all the time.
With the above in mind, she's not different than the majority of the American public in that, to her, the risk doesn't seem worth changing her lifestyle (ie..diet, ABX, needles/site reactions/flu symptoms) over a monster she caught a brief glimpse of over three years ago.
You and I know that MS won't be ignored indefinitely and it horrifies me that she's almost inevitably, eventually in for a rude awakening, but if she wants to live her life as long as possible in the bliss of intentional ignorance, more power to her.
I don't think that at this point she has the conviction that accepting life as a pincushion is certainly going to ward off disease advancement. Because she has no noticeable symptoms she has no enticement to go to the effort of ABX or diet change, etc.... considering that without symptoms and advancement she would have no way of determining benefit.
Why did she go on Tovaxin specifically? Basically because she wasn't on anything else and at that point the medical community was really hyping being on SOMETHING. Considering that MS is considered to be T cell motivated, the science behind Tovaxin seemed valid and, opportunely the Tovaxin show happened to be coming to a town near us.
In a quick proof read that seems to answer things as well as possible but if not, let me know.
Bob
Bob,
This is illuminating. Thank you for sharing. you're comments inspired the imponderable thread and I'd like to know if it would be ok for you or I to make a copy of them and post them in that thread? It's exactly the kind of discussion I was hoping to have there.
Ken
Posted: Mon Aug 31, 2009 12:23 pm
by Lyon
oo
Posted: Mon Aug 31, 2009 12:45 pm
by notasperfectasyou
Bob,
I don't read books, don't have time - I read medical journals. Surprised?
Thanks for permission.
I don't know about Stephen King, but I completely agree that we here at TIMS would make excellent characters for a book, movie, TV series. But, honestly, I .... and I sincerely mean this -
If the Gates Foundation found a way to fund us, I think we (unconstrained by the medical profession) would come up with something revolutionary. Yeah, we'd have to work out our differences, but I think there is a LOT of brain power here, we just can't make this our fulltime jobs.
I mean this as the sincerest of all compliments to the folks at TIMS, this is an impressive place of impressive people. I am happy to be part of what we do here. Ken
Posted: Tue Sep 01, 2009 8:04 am
by notasperfectasyou
Thanks everyone. The 4th video is up. Whatcha think of the hat? Ken
Posted: Tue Sep 01, 2009 8:45 am
by SarahLonglands
Cool hat, but in the middle of the night? Kim actually walks straight in this one, difficult to achieve.
Sarah
Posted: Sun Sep 06, 2009 6:29 pm
by notasperfectasyou
Sarah,
This is one of the interesting things we have noted recently. This process of going back and looking at the videos has been illuminating for us. Yes, we used to to more of the walks in the middle of the day to take advantage of energy, but now we are doing more walks in the evening. This entirely happened unconsciously, we did not plan to shift the time.
Kim just started saying, "lets do it later" and the typical push back procrastination thing resulted in us finding, that, YES! Kim has more energy in the evening than before. She's also feistier - meaning (as will be in a later video) she wants to walk more to try and do it faster. Just for the record we always count the first one.
Now, if you're tied at the end of the day (as Kim used to be), you're not going to get into a spirited discussion about wanting to walk more times to get a better time. Heck no, if you worn out at the end of the day, you want to be left alone. We know that, and Kim still is entitled to have days like that, but more often now, she's on a mission.
Ken
Posted: Mon Sep 07, 2009 6:06 am
by HarryZ
You and I know that MS won't be ignored indefinitely and it horrifies me that she's almost inevitably, eventually in for a rude awakening, but if she wants to live her life as long as possible in the bliss of intentional ignorance, more power to her.
Bob,
I can't help but see my wife as having the same philosophy as yours when she was alive. Marg went some 20 years with taking nothing (not that there was anything to take from 1971 to 1991) and lived a relatively normal life during that time. But as you stated, inevitably the monster does show up!
When the ABC drugs came along she refused to try any of them. Being in nursing, she investigated them and found them to have little effect on the disease while displaying a large amount of nasty side-effects. She spoke to her neurologist at the MS Clinic here and even he told her that in general, the MS Medical community was very disappointed in those drugs and that they simply weren't doing for MS patients what the drug companies had indicated they would. Only the alternative drug Prokarin provided her any relief from the progressing MS symptoms.
Hopefully your wife will enjoy many more years of a normal life without having to use any drugs and by that time the researchers will come up with something really beneficial.
Harry
Posted: Mon Sep 07, 2009 7:34 am
by SarahLonglands
Ken, if Kim started saying "lets do it later" that must mean a lot, if she both says that and continues to walk faster. Reading through EDSS ratings, it often says things like "up and abut for so many hours a day." Adding on energy wasting twins, you would expect her to be tucked up in bed way before "the middle of the night!"
Sarah
Posted: Mon Sep 07, 2009 7:39 am
by Lyon
oo
Posted: Mon Sep 14, 2009 11:17 am
by notasperfectasyou
5th Video is up!
Kim walks nearly twice as fast as in the first video. I've also added a poll. Thank you everyone for all the support and messages we've recieved since putting up these videos!!!! Ken
Posted: Mon Sep 14, 2009 11:25 am
by LR1234
I put yes, because it must show the messages are reaching her legs quicker than then did before showing some healing.
Posted: Mon Sep 14, 2009 5:18 pm
by Frank
Ken, its really a great success that Kim has achieved.
Apart from the impressive improvement in time/speed its maybe even more relevant that the style of her gait has substantially changed.
In video-1 she walked mostly on her heels, while video-5 shows her rolling the foot from the heels over to ball of the foot and stemming weight up on her toes.
An other thing I noticed is that on video-5 her feet do not stand so close together while walking. Compared to video-1 there now (video-5) is a natural gap between the left and right foot, which should be beneficial for the balance.
Her gait now looks significantly more powerful, dynamic and confident.
Regarding the poll, (at least for myself) I think that practice might also be an important source of progress, so I always find it hard to say what the causal factor is...
Anyway, congratulations!
--Frank
Posted: Tue Sep 15, 2009 5:56 am
by SarahLonglands
I agree with Frank about the rolling of the feet, despite the fact that it sounded more as if Kim was still walking on her heels. That's the result of being in a grouchy mood!
Of course practice is a source of progress, Frank, because if you don't practice you don't achieve anything.
Sarah
Posted: Tue Sep 15, 2009 7:56 pm
by pager
Great improvement! If you hadn't tracked that, it may have been hard to really see the improvement! You are a very caring and loving husband and make a good team!
Posted: Wed Sep 16, 2009 7:19 am
by notasperfectasyou
Frank wrote:Ken, its really a great success that Kim has achieved.
Apart from the impressive improvement in time/speed its maybe even more relevant that the style of her gait has substantially changed.
In video-1 she walked mostly on her heels, while video-5 shows her rolling the foot from the heels over to ball of the foot and stemming weight up on her toes.
Thank you Frank for making these observations. Kim and I hadn't actually thought about this and I haven't done the "Madden Chalkboard" with Kim's walk. I don't know how to analyze a walk. But, I'll try to be more atune to these kinds of observations.
Frank wrote:Her gait now looks significantly more powerful, dynamic and confident.
Regarding the poll, (at least for myself) I think that practice might also be an important source of progress, so I always find it hard to say what the causal factor is...
Confident is a good word. I also like Controlled. Kim feels greater control over her legs and it comes out in the walk and her attitude about the walk.
Practice. Interesting thought. I actually have encouraged Kim to practice, but she really doesn't ..... I mean, outside of the regular stuff she does during the day, Kim isn't setting aside time to practice walking. But, the thought makes me think of a sprinter who works out and developes technique on the track. I don't see Kim doing outside stuff to try to improve her walking.
But, your comment also makes me think of Fampridine as an excellent comparison. Kim's walking improvement is way greater than the Fampridine folks. Kim has received greater benefit from Combined Antibiotic Protocol than those considered to be Fampridine success stroies. Ken