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SD study

Posted by Rob H on September 21, 2012

I am at Mount Sinai hospital as I type this post. Yesterday I went through a battery of tests to see how good my senses were…there was a smell test, hearing test, peripheral vison test, and of course speech tests including recordings of voice samples.

After all that, I was given a (rather lengthy) MRI scan to measure my brainwaves while performing some of the same speech, vision, and hearing tests.

Now today, I was given a blood test – they are testing to see whether there is a specific gene involved in SD patients…and all this research will hopefully help the cause in finding a cause and/or cure for SD.

The big news, though, is that I was given an experimental drug (Xyrem). I have been in constant contact with the Xyrem people, they want to make sure I know all about it because it is a controlled substance and it can be dangerous if mishandled. It’s currently used to treat Narcolepsy but the dosage I was given was much smaller. Apparently, if your SD improves with alcohol consumption, the Xyrem can be effective as a “take as needed” drug to help you get through a rough day.

After taking the Xyrem today, I was given another MRI to see if my brainwaves were changed. Unfortunately I won’t know the results of this as it’s a study and the results are just for the research team. My results after taking the Xyrem were encouraging – I had very little side effect (a very slight light-headed sensation) and my voice quality improved slightly. I was given a very low dosage and my voice already sounds pretty good right now anyway, so I didn’t expect a dramatic improvement because there simply wasn’t much improvement available. But there definitely was a small difference and that’s encouraging to me. I imagine the difference will be more dramatic if my voice is in a worse state.

I hope the study continues to produce reliable results and that this will become another treatment option for SD patients. I also hope the genetic and other tests reveal a root cause that leads to a cure. My plane ride and hotel room in New York were paid for by Mount Sinai so it was a good deal for me and I was happy to help the cause.

Cancelled Botox

Today I also made a tough decision, I had my Botox appointment scheduled for Monday September 24th and I decided to postpone it another month. This is the 3rd straight month I’ve postponed it, having rescheduled my July, August, and now September appointments. The results from my one & only Botox injection on April 23 have been far greater than I could have imagined.

Today as I type this, my voice is still in decent shape. It was a tough decision this time because I can really hear my voice declining more than the previous two months. In July and August, my voice was sounding so good that it was a no-brainer to push off the appointment another month. This time, I know I’m coming to the end of my benefit period from the Botox shot and I don’t know how much longer it will last. But I do want to know just HOW LONG it does last! Although my voice quality is lower than it’s been in awhile, it’s still not having a negative impact on my life. I am still able to do everything I’ve been doing for the past 5 months. The only difference is now, I may have to repeat myself since my volume is not as much as it was a month ago. My voice is a little raspy but there’s still no breaks in the sound.

If I can continue to get Botox shots every 6 months, that would be incredibly attractive to me since it’s twice a year and not 3 or 4 times a year. Mentally it’s an easier thing to handle. We will see.

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September 21, 2012

SD study