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Still holding on…

Posted by Rob H on July 20, 2012

Today I wanted to provide an update on my progress with my spasmodic dysphonia. As you know from previous posts, I had a Botox injection on April 23 at the Cleveland Clinic. Typically, the treatment lasts about 3 months and it’s almost right on that mark now.

Voice quality

I am still experiencing relief from my vocal cord spasms. I have had no spasms since April 24 (the day after the Botox shot). My voice has been VERY slowly, gradually, losing volume but the slow decline is fine with me. It hasn’t caused any problems in my life and I would estimate I still have about 70% of my normal volume with no spasms.

In the past week I have noticed my voice “tiring out” after extended periods of talking…also have noticed some additional tension in my throat muscles which I didn’t have for the past couple months. So it definitely appears the Botox is wearing off but I’m still left with a very usable voice for the time being.

Along with the extra tension is the re-emergence of my stress headaches I experienced before the Botox shot. It normally happens in the evening, after a long day of muscle tension and it can be controlled with a couple Tylenol. But it’s still annoying. I had one of these headaches yesterday, in fact. But today it’s not there. As I said, it’s annoying but what ISN’T about this disorder?

Timeline

After receiving the injection, the ramp-up period was about 2 weeks, where my voice became weaker & weaker as the effects of the Botox shot kicked in. At it’s worst, my voice was maybe at a 25-30% volume level and it was very difficult (if not impossible) to talk in a loud environment like a busy bar. At the 2 week mark, my voice started “squeaking” or “cracking” much like a teenager going through puberty. Think Peter Brady in the famous Brady Bunch episode.

After this ramp-up period, my voice continued to recover and after about 2 more weeks (4 total since the shot), my voice was about 80-90% back. By the time I went on vacation to Jamaica on June 5th, my voice was about as close to normal as I could’ve imagined.

My REALLY good voice lasted about a month total – and since then it’s been a little weakened. I think part of the initial decline was due to a cold I had, I’ve actually had 3 minor colds since the shot and each time, my voice weakens a bit. The 3rd & last cold I had seemed to permanently take away about 10-15% of my voice volume. Maybe it was just coincidence (was my voice quality about to decline anyway?)…I will know more as time goes on and I can compare my timelines on future injections.

As I mentioned above, over the past week I have experienced another notch downwards to get to the estimated 70% level I’m at now. Some of the muscle fatigue I experienced before the shot are starting to return to my throat and some of my sentences trail off, especially if I am talking a lot. I skipped this month’s Botox shot which was scheduled for July 16, because I kinda want to take this all the way back down to my “baseline” to see how long my results will last on each injection. The next scheduled Botox clinic is around August 13th, if I remember correctly. I have an appointment and told my doctor that I hope I can cancel that one too! We’ll see.

Larry Page – Google CEO voice problems

I recently became aware that Larry Page, the CEO of Google, has had an unidentified voice problem. Knowing what I now know about spasmodic dysphonia and muscle tension dysphonia, it’s at least possible that he has one or the other.

See the article here:
http://www.nbcbayarea.com/blogs/press-here/Googles-Larry-Page-Loses-Voice-160041275.html

I would not wish this condition on anybody but I will say, if he DOES have SD I would hope it will turn out to be a GOOD thing for all SD sufferers as he could help raise awareness and funding for research to find a cure. So far it’s been a condition that is rarely talked about and little research is being done to find a cure.

As for the present, I think it would be a good thing for Larry Page to be more visible even as he battles this voice condition. (as long as his doctors ok it, of course)…maybe even get back involved with the meetings/conferences he’s cancelled due to these voice issues.

Taking it a step further, just spitballing here….why not develop a Google app or enhancement that allows better communication for those with voice disorders? What better opportunity to introduce a new product AND help others? It will also show people that despite a disability, he is still the same person and that he can still run the company just like he did before. (thus putting investors’ fears to rest). It will also bring more awareness to voice problems in general which is a good thing.

That’s all for now, I’ll have more voice samples coming soon and especially as my voice changes.

Progress Report July 7 – with audio

Posted by Rob H on July 7, 2012

Hello, this is a new post to update you on my progress with my spasmodic dysphonia voice disorder. It’s been over 2 months since my April 23 Botox shot and I definitely feel like the dosage is starting to wear off a bit. My volume and voice strength have decreased slowly over the past couple weeks, I’m still at about 75% of my normal volume though. In addition, I have noticed my voice tends to wear out a little bit more towards the end of the day again. This is similar to the way my voice reacted before the Botox shot. So I see signs of my old SD voice coming back.

Still, there are no spasms. A little loss of strength is not enough to make my life uncomfortable (yet). I’m still able to have normal conversations with people face-to-face, I’m still able to order food through drive-through speakers, and I’m easily able to talk on the phone.

The only time I have trouble is when I’m in a louder environment, I can still communicate but it takes a little more effort than it has the last couple months. It reminds me of my initial decline back in the fall of 2011, when I first started noticing my voice getting weaker. Every now & then, I have to repeat myself but overall it’s doing well. If my voice could stay at this level for the rest of my life, I wouldn’t complain. But I know that is not going to happen.

One other note: the next appointment for the Botox shot is scheduled for July 16. I have to call by July 10 to inform the doctor whether I’m keeping that appointment, or if I want to wait until the next Botox clinic on August 21. So it’s a little tricky for me to decide whether or not I’m going to have the shot this month or not. I’m leaning towards “no”, trying to let the Botox completely wear out and see how long it takes before deciding on another injection. I’m hoping for a very long, extended down period.

Waiting until August 21 has its downfalls, because I have some things planned for Sept 1-2. Judging by the first Botox shot back in April, it was 2 weeks before my voice started rebounding so that will mean my voice will be weak for the planned events that weekend. I guess there will always be something so I’ll keep you posted what I decide.

Below is the voice sample from yesterday, you can hear my voice still sounds pretty good:

SD Voice Sample

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