Edward update on IPLEX
From: Edward
Firstly I would like to say sorry for the fact that I haven't been reporting to the team as consistently as others,... been going through a lot of personal issues, etc. that I don't care to go into right now.. But let me say this, every chance I get , I read everybody's e-mails/letters and believe me, all are quite interesting and I find myself spellbound sometimes by the intellect & the spirit on this team.
Today is my 22nd day of IPLEX use (full dose) -- although I started IPLEX officially on April 23rd, I would like to use May 1, 2009... because it was on that date , when I started using my full body weight adjusted dose.
I have several friends /PALS... American, European, Australian, South African, Canadian, etc. who are anxiously waiting for any and all updates from myself, and others , who were lucky enough to get under the wire , before the FDA's bogus March 6 cutoff date .
Although I want nothing better than to give any PALS a regular account of my IPLEX experience , I have some reservations about giving weekly updates, where very little noticeable improvement occurs. Also I recently received an e-mail from a good friend -- where I was made aware that... "the costs of IPLEX is tremendous, as the European distributor charges More Than Twice As Insmed Also delivery is a major problem. I just hope that all the trouble with Iplex will be justified." Twice as much as Insmed ? (Man That really pisses Me off).
My point is, I would hate for any PALS to go into hock, based on my experiences with IPLEX. As almost all PALS know, ALS is a designer disease, with different progression rate's, onset's, etc. therefore very important for me to be... to be accurate, unbiased, and is responsible as possible.
So far with IPLEX, there have been miniscule improvements & some declines in a number of areas, some have been short lived. But as we all know there are no improvements (ONLY DECLINES) with this bastard disease , therefore I have concluded that IPLEX is something I will continue. Overall I think I can safely say that I feel very , slow improvements in a number of areas. Giving a weekly report (at least to me) is almost like giving an hourly progress report , for a newly seeded lawn.
Don't mean to be a jerk, but I'm really waiting to see if some of these positives will be sustained, before I created a stir, and end up losing credibility. I hope you all understand
Favorable condition changes noticed in past week - A VERY SLIGHT BIT OF STABILITY (NOT SO WOBBLY) WHEN I WALK to the bathroom
Another Interesting gain recently notice by my wife, for the last 2-3 days she's been noticing slightly bigger ARMS? -- I cannot validate this myself, because I don't/can't really look at my arms and/or butt on a daily basis. --
For the first time in about 6 months, I've been more comfortable while sleeping horizontally previous to IPLEX I had to jack up my hospital bed -- 90° angle ?
As far as IPLEX goes... I went into this matter fully understanding that IPLEX was not going to be the magic / silver bullet, but rather a viable complementary therapeutic to possibly help extend my life , by slowing down & possibly stopping this raging progression . I don't think in terms of a "cure" for this disease yet, I think in terms of "borrowing time." Doing all I possibly can , to slow the monster, even it it's just a little, looking at things like supplements, diet, exercise, getting vitamin D to the sunlight and attitude which are important components in trying to slow down ALS or improve symptoms. Looking at devices such as the diaphragm pacing stimulator, BiPap, and trachoestomy ventilation to buy me more time, keep my head above water, or to get me within striking range... which means hopefully, reaping the benefits of new treatments that are just around the corner -- how far around the corner is the question.
Sincerely,
Edward W. Esparza
(pals since 2005)
