Author: Jens-Ingo Farley
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How to Make a Treatment Seem Better Than It Is
The key is to shroud the treatment among others that are low-risk with clear short-term benefits and thus make it impossible to attribute specific improvements to specific treatments. For example, end a treatment session with a massage and ask for treatment feedback either during or immediately after the massage. Two more examples follow. The first…
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Can You Repeat That?
Information was consolidated here that used to be elsewhere on this blog, then expanded. This page is highly specific to SCA3, which I have. In the beginning… The neurons (brain nerve cells) in the cerebellum initially form at the 6th or 7th week of embryonic development, just before the fetal stage, and with SCA3, they…
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Stem Cell Terminology
There was a recent article that I found difficult to read without looking up many terms. It seemed worthwhile to use it as a learning exercise. Here’s the original article (an abstract): 2017-06-30: “Human Umbilical Cord Mesenchymal Stem Cells Protect Against SCA3 by Modulating the Level of 70 kD Heat Shock Protein” Here it is…
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Quel Che Sarà Sarà
SARA—Scale for Assessment and Rating of Ataxia. This is an 8-category, 40-point scale. This scale assesses a single numeric value from 0 – 40 to reflect the combined severity of one’s ataxia symptoms. Category summary: SARA is used by neurologists to assess an individual patient’s decline. Different people with the same score will have a…
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An Ounce of Prevention?
How much impact would SCA prevention make? I have developed a web-based tool to help look at the question. DNA testing has been available up through SCA3 since 1995. I think this influenced some people’s approaches to family planning—at least, it did mine; I was tested in 1996. If you know the disease is genetic…
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Why I’m Skeptical of Troriluzole for SCA3
I’m skeptical of a 20-plus-year-old drug (riluzole)—shown mostly ineffective for SCA3 (and SCA2)—in a new prodrug package (named BHV-4157 in 2016; also called trigriluzole in 2017; renamed to troriluzole in 2018) being then on-label repurposed for SCA/SCA3. This seems to me to be primarily a money-generating move, and yes, I do accept that, because I accept…
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CRISPR and Crunchier
My understanding of CRISPR/Cas9 is simple: it’s a gene-editing tool that can change the DNA in the genome of an individual cell, like genomic search-and-replace, thereby modifying the cell before it performs its function(s), such as replication (cell division in non-neurons) and protein creation (gene expression). 2017-10-25 note: CRISPR/Cas13 operates on RNA instead of DNA,…
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Shut Up, Genes (ASOs and RNAi)
Antisense oligonucleotides (ASOs; sometimes abbreviated as AONs) are a form of gene silencing discovered in 1978. The first ASO drug was approved by the FDA 20 years later in 1998. Another form of gene silencing is RNA interference (RNAi) and was discovered in 1998. The first RNAi drug was approved by the FDA 20 years…
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Vision Correction and Proprioception
Vision correction affects proprioception: objects in focus are not where they appear to be. Apparently, only some people—perhaps especially those with an impaired cerebellum, such as myself—are particularly sensitive to this 3D shift—i.e., the discrepancy between where an object actually is vs. where the cerebellum computes the object to be based on what the distorted…
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Clearer Thoughts on a Cure
Some of the spinocerebellar ataxias, including SCA3, are genetically similar to Huntington’s disease (HD) in that they involve CAG repeats on a chromosome. I’ve found the HD community to be more informed and practical than the SCA community, where: There’s not a misinformation campaign against accurately conveying disease prevalence, as there is for SCA. Sadly,…