Re: A Tough Job...
I haven't been parenting for very long but the one thing I stress to my children is "It's not what you say but how you say it." While I am the parent, I am not without fault. If they have a problem or believe I have been unfair, I'm willing to discuss it. I will not, however, give in to temper tantrums. That is a sure fire way to NOT get what you want. I understand your frustration, Dee, but I really wish you would use it to positively rally the troops in support of getting the policy modified (or at least clarified) rather than to simply bash those who are just following the rules. I have to admit that I am VERY uncomfortable with this whole thing-enough so that if it continues I will no longer be on the bulletin board myself. I have enough stress in my life living with this disorder and raising young kids that I don't need to come here for support only to find sarcasm. If you want to go about this the right way, then you have my support. I will not, however, be a part of attempting to alienate the moderators who are just doing their jobs. Creating tension is the easy job. The tough job is working within the system to achieve positive results and change while still being a positive role model to the newcomers who are looking for support.
Kelly in Dallas
--modified by Kelly Saffell at Wed, Mar 20, 2002, 12:46:49 --modified by Kelly Saffell at Wed, Mar 20, 2002, 12:50:24
Re: A Tough Job...
Hi Kelly,I don't have a beef with you. I think you are a great asset to this BB. However I do take offense when you "go parental" and insinuate that this is a temper tantrum! Just like our letters to Oprah, any suggestion of changing the Policy falls on deaf ears. Because there is NO MONEY to be had from alternative treatments, the Bureaucrats bad mouth anything that doesn't "fit the profile" or anyone who doesn't "follow the rules". Rules were made to be broken, and yes, that comes with consequences. It's modern medicine, NOT alternative medicine, that has caused blephs and dystonia for many of us. So why do we always get the warning when anything alternative is posted? Have you ever seen the movie "Lorenzo's Oil"? I suggest you watch it and pay close attention to what Lorenzo's parents had to put up with and what their solution was. Peace,
Dee, The Unscrupulous Purveyor from OR
Re: Lorenzo's Oil & bleph research
I think that is a fantastic movie and EVERYONE with a serious (or even not so serious) dis-ease should see it. It is so motivating and teaches you that if you want hope for an incurable dis-ease - YA GOTTA MAKE YOUR OWN HOPE! Imagine what could happen if everyone with blepharospasm did a few hours of research every day on this and never gave up until their own cure was found. We have 2 choices: we can sit around and accept that our drs told us we would never get better OR we can take that time and research our own cure (assuming our eyes let us - however if we can read this BB, we should be able to do at least SOME research). When I first got this dis-ease I did all kinds of research on blephs. After countless hours, I gave it up because I only came up with drugs and botox. The alternative sites of course had nothing because it is a rare dis-ease. (Actually the only thing I found that worked for someone was HBOT) So I then expanded my research to related subjects (such as: neurological toxins, environmental toxins, neurotherapies, dopamine levels, Parkinson's (it is interesting that many drugs that work on us are originally for Parkinsons), neurological nutrition/detoxification, neurological parasites, mercury poisoning to the brain, etc., etc.) and wow a whole new world of information and probable causes, possible tests , etc. has opened up! This is one reason I haven't been on the board much because I use what limited eye power I have to do research...if it is the last thing I do...I WILL DRIVE AGAIN.... and when I do it will be WITHOUT a struggle!!!!!! (Gee ... did I yell that loud enough?) Shanasy
Re: Lorenzo's Oil & bleph research
I saw the movie twice and was very impressed at the parent's tenacity in finding a cure, certainly without the help of the medical establishment.
Yes, it is a fantastic movie and everybody should see, especially docors, who much too often seem to have a very closed mind.
I'm guilty of not having done much research, sort of was waiting for you to come up with something, Shanasy :-), but you inspired me to get with it and be more diligent.Christel in Ca.
Re: Lorenzo's Oil & bleph research
I've seen that film at least 3 times, Shanasy, and it always inspires me. I have done some research at various libraries on the net - there are lots of beb papers out there and I've talked about a couple of them on this bb (repetitive exercises and such). I find though, as I'm not very computer literate, that I get `moved around and clicked out of libraries' and its very frustrating - especially with the limited vision! I can imagine how much research you are doing and I KNOW YOU WILL DRIVE AGAIN (I heard ya!). You are right,we must keep at it.June in Toronto(beb/meige)
Re: A Tough Job...
Is this drug not on the Dystonia Drug list, Dee? I've just given a copy to my pharmacist (my doctor already has it) and he didn't know about the drugs that were on that list, let alone a new one? Dotell.June in Toronto (beb/meige)
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