Guest guest Posted May 10, 2002 Report Share Posted May 10, 2002 Greetings Dodie! You noted: > I intend to show hubby ... It wasn't until I read about it and realized it killed my Grandfather that I realized just how important it is. I would be happy to discuss it with him, if he wants. > So, is the fumbling on the keyboard also a sign > of cerebellar degeneration? Yup. It is know as ataxia (or incoordination). > I don't have near the dexterity I used to have. Sometimes that just comes with age. > The eyes are having to work harder too. Go see an eye doctor and ask about nystagmus (eye wiggle as they try to focus). Also ask if there is any cog wheeling. Tell the doctor you have a degenerative neurological disorder that sometimes results in problems with the cerebellum. > My neuro has ordered a MRI for Monday. They don't show anything for me either. My neurologist indicated that's not unusual for some of these disorders. But they want to eliminate other potential problems (tumors and such). Best Wishes! =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 , Such wise, wise words! Early intervention was what pulled my son from the darkness. Robin M. > Being trained in social psychology with research methods and statistics as requirements, and being married to an attorney and a logician; I have been trained to read everything with a jaundiced eye. Any research that only states one side of any story is flawed in my opinion. Any abstract that was funded by one particular organization (e.g. the GOVERNMENT), is reason to be suspect. There are always two sides of every story. Research needs to be well- analyzed, with large enough samples, replications available, double- blind studies and good statistical analyses. A meta-analysis of all available research on the subject is best, rather than purporting one single study to be an absolute determinate of an outcome. Sometimes people go looking for studies that prove their hypothesis, instead of starting with a hypothesis and testing the variables to see what the outcome might be. > > With all the information out there about autism, its causes, its treatments; one can get easily lost. I tend to trust the studies and the researchers best who are not funded by any organization, who are not looking to prove any particular hypothesis but are just purely looking for answers to some of their questions.I trust the researchers who have nothing to gain and everything to lose (e.g. Andy Wakefield) .I learn most from reading entire books and attending conferences, than from reading isolated articles from the internet and Newsweek. Studies such as the Danish one and the one in the Schafer report this month (both coincidentally, sponsored by the National Institute of Health) have obvious flaws that have been refuted already multiple times by other organizations and researchers. > > I wish I had the time to read everything that is out there about autism and do my own meta-analysis of the research. I wish I had the brains and the energy to learn and understand everything about the biochemistry involved in the causes of autism, and thus understand the treatments for it. But since I don't, I do what I can, I try what seems to work, and I keep searching for the answers. I will not be resigned to mere " acceptance " until I have done everything I can for my son. I also put a lot of faith and trust in those people who are far more educated than me, and trust in my parenting abilities and trust in a higher power that I will make the right decisions for my son's health and well-being. > > I wish I had questioned the medical 'experts' more when my ob/gyn gave me a flu shot when I was pregnant; when my pediatrician gave him all those vaccines, multiple rounds of antibiotics and mineral oil for his constipation. I wish I had questioned the 'experts' who said, " oh don't worry, boys just talk later " instead of " Act NOW- early intervention is key " . I wish I had not waited when the medical 'experts' told me " Kids are just picky eaters, they'll eat when they'll hungry " . I hate to be so cynical these days, but I don't think I will ever have blind faith in any " professional " again. I will need every study explained and refuted, I will question every medication and check the PDR and call the manufacturer.I will personally take every vitamin/supplement and piece of food that my son takes first, so that I know what I am doing to him from now on. Question everything, then live by your convictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 , Your "musings" are "right on"!!! I agree there are many studies, articles and tons of information about autism. The important thing is to make as educated a study as you can that will benefit YOUR child and trust in YOUR parenting abilities and intuitions and go from there. One diet does not help everyone, nor does one speech program or one therapist help everyone. NOr can we believe in one article that was written in Denmark!! But everyone needs to keep an open mind and try to do the very best that will help your child suceed and become the best that he/she can be!!! Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 Thanks, , for sharing the wisdom. I understand and relate to your thoughts. In my grad level Research Methods courses, we were always told to go to the abstract and read the studies for ourselves. One professor enjoyed picking out the flaws from scientific studies, to show they were mere pseudo-science, because the creators of the study had violated the scientific method in some way. I think Boyd Haley put it best: (he had a quote similar to this on his web site for a while:) Absence of proof is not absolute proof. And then of course something I've seen in action in the last 2.5 years: No matter how dim the picture painted by " science " , a mother's hope for her child surpasses everything else, and her gut instinct is equal to or greater than the most educated doctor or scientist. Penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 Wow!! We have some very bright folks on our board here!! Fantastic! Robin M. > Thanks, , for sharing the wisdom. I understand and relate > to your thoughts. > > In my grad level Research Methods courses, we were always told to go > to the abstract and read the studies for ourselves. One professor > enjoyed picking out the flaws from scientific studies, to show they > were mere pseudo-science, because the creators of the study had > violated the scientific method in some way. > > I think Boyd Haley put it best: (he had a quote similar to this on > his web site for a while:) > > Absence of proof is not absolute proof. > > And then of course something I've seen in action in the last 2.5 > years: No matter how dim the picture painted by " science " , a > mother's hope for her child surpasses everything else, and her gut > instinct is equal to or greater than the most educated doctor or > scientist. > > Penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 Actually, the research funds came from the NAAR organization--many groups apply for grants from them from around the world, and they are well respected and noted in the autism community, along with CAN, ASA, and others. Just because a study is conducted in another country, doesn't mean it should be ignored--look how many against vaccinations refer to Wakefield, and his study was in England. I don't think ASM would publish the report in Horizons, if they felt it was quacky. Every choice should be respected by all, and be an individual family choice--I completely agree. -----Original Message-----From: JCrane41@... Sent: Monday, September 29, 2003 10:34 PMTo: EverydayMiraclesAutism Subject: Re: musings, Your "musings" are "right on"!!! I agree there are many studies, articles and tons of information about autism. The important thing is to make as educated a study as you can that will benefit YOUR child and trust in YOUR parenting abilities and intuitions and go from there. One diet does not help everyone, nor does one speech program or one therapist help everyone. NOr can we believe in one article that was written in Denmark!! But everyone needs to keep an open mind and try to do the very best that will help your child suceed and become the best that he/she can be!!! Judy Support Everyday Miracles by shopping online at IGIVE.COM, where a portion of every purchase is donated to this support network. Proceeds received will be used for a variety of functions, such as educational activities, therapy, famiy outings, etc. http://www.igive.com/EDM Quote Link to comment Share on other sites More sharing options...
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