HD Blog

That does not necessarily mean I’m wrong on a particular point any more than it would mean that a person with an ‘appropriate’ college degree is always correct. Just take a look through a few study abstracts and you’ll find that two highly educated and professional research groups can come to opposite conclusions on a particular point. One or both are wrong; we just don’t know who it is.

Fortunately, we have a number of laypeople and professionals in the Huntington’s Disease community who provide information and opinions. Read as many of them as you can and don’t just rely on any one source for your information, including this website. We don’t all agree on everything!

I recently had a very pleasant email exchange with a college professor who gently took issue with a statement that I had made regarding environmental factors affecting the age of onset in Huntington’s Disease. Simply put, he believes that there is less evidence of this than I do. It may very well be that he is right on this and I am wrong. He certainly has more experience and training in this area than I do. I haven’t changed my mind (stubbornness?) but I will certain weigh his opinion when I read and write on related matters.

One area where there is disagreement is the nutritional supplement coQ10. Currently, I believe that in adequate doses (600mg/ed or higher) it appears to offer a ‘mild’ benefit to those with Huntington’s Disease. I can cite a few peer-reviewed studies that support my opinion. Another person, with more years of involvement with HD than me, believes that coQ10 offers no benefit and may in fact be harmful to those with Huntington’s. They can also point to real studies that support their opinion. One or both of us is wrong but if you read what both of us have written and consult with your doctor you can make a more informed decision on whether this supplement is right for you.

Speaking of doctors…don’t expect them to be always right either. Yes, they have the years of training and experience but they are human also. Even a specialist such as a neurologist has to keep up with research (some of it contradictory) for dozens of neurological (and other) diseases. It isn’t humanly possibly to be up to date on all the latest research for all the neurological diseases and have lots of real world experience in each of them.

Also, a neurologist is not a psychiatrist or a geneticist. They have some knowledge in these areas but there are others with more knowledge and experience. Finally, some doctors have better work ethics and people skills than others. Some just shouldn’t be doctors who see patients. Remember to trust your instincts and don’t be afraid to get referrals and second opinions. Ultimately, you are the ‘case manager’; the one who is ultimately responsible for your own health care and that of your family.

Be careful of those with their own “axes to grind” and ulterior motives. I’ve seen people make deliberately false statements about HD organizations and others in the community. The motives for this vary, but the effects are equally destructive.

I even know of one person who went on disability for Huntington’s Disease who was almost certainly asymptomatic at the time (and still is). This person now states that their surprisingly good state of health years later is due to a ‘miracle’ treatment gotten outside of normal medical circles. There is no one else in the entire world with Huntington’s Disease that has shown any similar benefit from this so-called treatment. (Of course it is possible to conceive of circumstances that would not involve of any intentional falsehood.)

So, in conclusion…

There are almost certainly errors on this website (and maybe even in this post). Since the first day of this blog, I’ve enabled comments so that you can post a correction or clarification should you find a problem. As a result I’ve had several readers through emails and comments point out errors and concerns and I give a special thanks to all of you who have done so.