HD Blog

Social Security Disability: "I suggested to a committee member that we need to have the Social Security disability regulations changed so that HD has its own criteria since right now the criteria for organic brain disease are being substituted inappropriately." This is so true! I'll have a future post on this subject.

When does HD begin?: "Doctors and researchers are finally listening to HD families when we tell them that cognitive and psychological symptoms start long before the classical neurological symptoms used to diagnose onset." This is so true! I've seen evidence 20 years before the 'official' diagnosis of HD. This is important as it affects when disability benefits begin. More on this in a future post.

Protein Aggregates: "Inhibiting them from forming in people with early stage HD might be a good thing because it might address the toxicity of the mutant protein. " This reference is understated. It's only been in the last 9-12 months that they've been able to determine that protein aggregates (ameloids) are the cause (not a side-effect) of early cell death. Knowing this allows researchers to develop more targeted strategies for attacking HD. It's hard to overstate the importance of this knowledge.

LAX-101: "The good results in the area of movement..." It isn't going to be approved to 2005, at the earliest. We know it's well tolerated so if you wish to get the benefits of LAX-101 now just make sure you're taking enough fish oil to get 2grams of EPA a day. It's not that expensive and it looks to be a great investment in maintaining your health.

CoQ10: "...suggest that maybe the CoQ10 doses should have been higher." This is true for many supplements. If you take Coq10, and the evidence is that it would be a good idea, you should take at least 600mg's a day. The maximum benefit might come from as much as 1200mg's a day. Unfortunately, this is an expensive supplement.

Tetrabenazine: She calls for more research on this medication.

Read the article for much more information.