Hello 2016

Posted by Rob H on March 15, 2016

Wow I didn’t realize how long it had been since my last posting. What’s been happening since then?

Let’s see…Donald Trump (??!!!) is about to win the Republican nomination. That’s pretty crazy to put into print.

What else? Well seeing that my last post was in August 2014, I guess 2015 happened! I only had one shot in 2015, it was on July 20. I was able to stretch my Botox injection almost exactly 1 year (from July 21, 2014 to July 20, 2015). My old voice doctor retired, and I got a new doctor who is an industry expert with many studies & speaking arrangements to his credit. I also still have the same “shot guy” I’ve always had. They do the injection as a 3-person team, with a nurse on hand taking down notes to my file while the anethestist does the injection, guided by my voice doctor to ensure it goes in the right spot.

The funny thing was, my shot lasted so long that my doctor joked “see you in a year” when I was leaving. I hope so.

Ok now for some additional details on my last shot: I was really preparing my co-workers for a breathy, weak voice for 2-4 weeks after the shot. That’s what I have typically experienced, and my shot in July 2014 caused quite a long breathy voice period (close to 4 weeks, much longer than previous shots). So what did I do last time? The exact same thing. I figured I can live with 1 month of breathy voice if I can get 11 more months of useful voice after that.

Funny thing is, this time wasn’t the same (even though I got the exact same dosage). That’s the unknown factor when dealing with these Botox treatments. Some are “duds”, some work beautifully, and some are in between. It’s hard to know from time to time exactly what will happen. So this time, in July 2015, I had NO down time on my voice. Ok maybe a couple days where it was “weaker”, yes, but my voice never bottomed out like it has on every other shot. I have no idea why.

Now, as for the length of time I get out of it: that’s still up in the air. I am now 7 1/2 months out from that last treatment, and my voice is definitely weakening. The same thing happened last time, I kept wondering how long I could stretch it out and I think the last time, I went past where I should have but it was still a usable voice so I “lived with it”. I would estimate I had about a 30-40% voice by the time I had my last shot in July 2015.

Right now, my voice is probably about 65%. It’s definitely weaker but not bad yet. So it’s hard to plan my summer as I don’t know how fast the decline will be & when I need to plan my next shot. I hope it’s in July or later but we will see.

End of August 2014 update (with a BUNCH of audio)

Posted by Rob H on August 30, 2014

What a rollercoaster it’s been since my last post. Mostly downs, unfortunately, but hopefully on the up-swing now.

As I type this, on August 30th, I still do not have a full voice back yet. It’s getting better, but still probably only 50% at this point with NO ability to speak up in a loud environment…I might as well not try in those situations.

So listed below are several voice samples taken over the past month, to show the different phases/sounds of my voice as the Botox started to take effect. This first one is taken on my way to the appointment, before the Botox:

Audio #1 – 7/21/14

Audio MP3

(here’s a link for audio #1 in case the player doesn’t work)

This next one was taken right after the appointment. You will hear me talk about this particular shot being more traumatic than normal. I mean, it always sucks having a needle stuck into your throat. But this time was different. As you’ll hear in the recording, the shot made my voice IMMEDIATELY worse which has not happened before.

Audio #2 – also 7/21/14

Audio MP3

(here’s the link for audio #2 in case the player doesn’t work)

Audio #3 – 7/22/14

Audio MP3

(here is the link for audio #3 in case the player doesn’t work)

My voice still sounds pretty good on audio #3, but it’s about to change real soon…………

Audio #4 – 7/23/14

Audio MP3

(here is the link for audio #4 in case the player doesn’t work)

Audio #5 – 7/26/14

Audio MP3

(here is the link for audio #5 in case the player doesn’t work)

As you can hear in audio #5, I was getting a little bit of a cold. This would morph into a major, voice-crippling cold later. I will go into more detail on that in just a bit.

Here’s audio #6 – 8/1/14

Audio MP3

(here is the link for audio #6 in case the player doesn’t work)

As of this audio recording, my voice was “trying” to come back like normal, about 2-3 weeks after the shot. However, I still had this pesky cold wreaking havoc & not allowing my voice to fully come out. We proceed:

Audio #7 – 8/6/14

Audio MP3

(here is the link for audio #7, in case the player doesn’t work)

As you can hear from the voice sample from audio #7 above, my voice is continuing to TRY to come back as it started to do in the previous recording. However, it’s very erratic and in some ways, more frustrating to have it this way than to have a “weak but consistent” voice. This is because it’s difficult to modulate my tone when speaking to somebody, particularly at work or on the phone. I find that as my voice cracks in & out, the actual volume goes up & down too (which is normal)…and it makes it hard to put together long conversations with somebody.

Audio #8 – 8/14/14

Audio MP3

(here is the link for audio #8, in case the player doesn’t work)

You can probably hear in my voice at the beginning of audio #8, I have become frustrated at this point with the lack of results. At the time of this recording, it had been over 3 weeks since the Botox injection and I really didn’t anticipate it taking this long.

Audio #9 – 8/22/14

Audio MP3

(here is the link for the audio of #9, in case the player doesn’t work)

By this point, it’s been fully 1 month since the Botox injection, and still my voice is not back. It certainly sounds better than the previous recording, but still you can hear at the end my voice goes back out again. In all my previous Botox treatments, my voice was back to full force by a month later so this was very unexpected.

You hear me speculate in the recording about the correlation between the Botox injections and getting a cold. It has happened quite frequently and I don’t know why that is. It’s something I am going to bring up to my doctor and see what he thinks but the last two times I have gotten shots (December 2013 and July 2014), I have gotten bad colds…not just the little colds you get every now & then but full-blown bad colds. And in between shots, I get a bunch of mini-colds. I remember talking about it in a previous post last year sometime, it seems I get more frequent colds but none are bad, just a bunch of minor colds. Well, I guess I jinxed myself.

Audio #10 – 8/30/14

(This one was taken just now, while typing this blog post)!!

Audio MP3

(here is the link for audio#10, in case the player doesn’t work)

That’s all I have for now, but you can see a definite progression, albeit slow…I still have not gotten back to what I would consider a “good voice” and have even begun to wonder if this treatment was a “dud”. Only time will tell.

July 2014 update (with audio)

Posted by Rob H on July 11, 2014

Hello! It’s been awhile since I’ve done an update but yes, I’m still kicking!

I’ve been very busy with work and with a side business I’m working on, so there hasn’t been much free time. My regular job is going well, although I still worry about the long-term viability as it’s still considered a “contract” or “temporary” position. I know the company likes me, in fact out of 8 contractor employees hired I am the last one standing. The real question is whether I can stick around long enough to be able to apply for a position once one opens up so it’s a waiting game.

I like the job because it doesn’t involve a lot of talking, mostly desk work on a computer and it’s perfect for me. It’s low stress, which is another big plus as those of you with SD know. So needless to say, I’m hoping I can stick it out as long as possible.

That said, on the side I have been working on some things to make some income with my own home-based business and bring in income that way. I’m taking a methodical approach, trying to build it up gradually so that hopefully I will be able to replace my regular job’s income. I’m not going to go into details yet because it’s not far enough off the ground to know whether it will be successful or not but I’m very optimistic so far.

As far as my actual voice, I have been in a “fading” pattern for several months. As I type this, I would estimate my voice is under 50%, maybe 40% or even 35% of my normal good voice. I did take a voice sample about a month ago, included below. My voice was probably between 50-60% at that time, and has gone down even more since then.

The headaches which invariably come with the neck strain have returned off & on as well. It’s not always there, but when it comes it usually sticks around for a day or two, then goes away for a few days, then comes back, so it comes & goes.

Audio MP3

(in case that doesn’t work, here’s a link that should open in a new window)

You can hear some of the weakening in my voice but in general it’s still very usable.

The next Botox appointment I made is for July 21. I was really trying to stretch this out farther than last time. In fact, my goal is to get longer & longer out of each Botox. The last injection I had was in December so it took 7 months, just like the one before that. However, it was the lowest dosage yet and these last 2 months, my voice has been below average (but useful still). So this is about as far I can stretch it this time.

I’m pretty sure the injection 2 times ago, I could’ve gotten 8 or maybe 9 months out of that so that will be my goal next time. I am holding this false hope that maybe if I keep stretching it, my voice problems will eventually go away as my voice re-trains itself to be good. Sounds crazy but you never know.

Until next time, I’ll have more updates then.

April 2014 update

Posted by Rob H on April 5, 2014

I just realized I haven’t updated this blog in awhile! I’ve been doing ok, I did start a new job in late February so I’ve been there a little over a month now and I do enjoy the work. Best of all, it’s a job where speaking isn’t absolutely necessary so if my voice does get bad again, it shouldn’t affect my job. The downside is, it’s just a job and not a real advancement in my career. There are possibilities for advancement though, so that’s at least out there as a possibility.

As far as my voice, I have had some less-than-average results so far from this latest round of Botox. I had it done in December so we’re coming up on 4 months, and really my voice never got to what I would consider great…I would say at its best, I’ve been about 70-75% of what used to be my “normal” voice.

A couple factors are influencing this: A lower dosage, and multiple colds.
As I mentioned in a previous blog post, I had a lower dosage of Botox this last time. We are still trying to find the “sweet spot” dosage: the longest benefit period with the lowest side effects.

I will say, the side effects this time have been very minor. I didn’t really have much of the choking on liquids, which is the main side effect…but my voice weakness still was there. In fact, I went on a vacation in mid-January and at the same time, got a fairly severe cold…and for about 4-5 days, I had practically no voice at all. I certainly could not be heard in any sort of loud environment.

The cold, I think, had an effect on the Botox effectiveness. I have previously had this confirmed by my doctors, they theorize that having a cold can limit some of the Botox benefits. In fact, my original November 2013 Botox shot was pushed back to December for this very reason (I had a cold in November).

A couple further observations: I have had a couple “minor” colds over the past couple months, since that major January cold. Every time, my voice weakens but not to the point where I can’t talk or be heard. Every once in awhile, I have to repeat myself but I can still effectively communicate with no problems. Sometimes I can even tell a cold is coming on before I have any real symptoms…just by my voice weakening. Usually I can take some echinacea which works pretty well for me, and head it off before it gets severe.

Another observation is that I have had stretches where my neck muscles are strained. One such stretch was about 2 weeks ago, it lasted about a week and it almost feels like the Botox is leveling down a notch. Instead of gradually wearing off, it’s almost like it goes in stages. I get the muscle strain in my neck, my voice gets a notch weaker (maybe 5-10%)…then levels out again for several more weeks. I have experienced this with previous Botox treatments as well, it’s just that this time I NOTICED it…really I hadn’t given it much thought until now.

I also hadn’t given thought to the actual muscle strain until recently. I have assumed all along that the muscle strain IS the thing that’s causing my voice problems (muscle strain —> tightens the muscles —> strangles the voice). Now, however, I’m wondering if there are two separate things going on. Because the muscle strain is more typical of MTD, I believe. So I’m beginning to wonder if I have both SD and MTD. I’ll talk to my doctor and see what he thinks.

I do need to get clarification on this because I’ve been researching/considering surgery to fix my condition. What I don’t want to happen is to have the surgery, my voice gets fixed, but I still have neck strain. The neck muscle strain in and of itself is something I don’t want to live with for the rest of my life. This muscle strain causes pretty intense headaches and it’s just not pleasant. I would hope a surgery would take care of both the voice problem AND the neck muscle strain. So I’m doing more research on this subject.

That’s all for now, I’ll have voice samples soon but for now, if you heard a recording you would consider my voice pretty normal.

April update – many updates!

Posted by Rob H on April 19, 2013

I have a bunch of updates since my last post, so I’ll just dive right into them.

One year anniversary

First off, we’re quickly approaching my 1 year anniversary for my first Botox injection which was on April 23, 2012. I’ve certainly learned a lot since then and continue to learn every day. One of the things I think of as I look back on that day is the mixture of emotions I had: fear, excitement, anxiety, and hope. All rolled into one day! I remember wondering if it was going to work for me (it did), if it was going to hurt (it did), would I have bad side effects (some, but not bad), and at the time I was also wondering if my voice hold out long enough for my class reunion (it did).

Voice update since last post

Still similar to my last post, my voice has been ever-so-slowly declining. I can definitely feel more strain in my neck, and my voice is more & more “froggy” instead of clear. But still no spasms so I can deal with it! I have had to repeat myself a few more times lately, due to the lower voice quality/tone but still I am having little trouble communicating on a daily basis. I had a Botox injection scheduled for April 15 which I cancelled for two reasons: one, I still want to see how long I can hold out (last time it was 6 months, this time it’ll be at least 7 since the next scheduled Botox clinic isn’t until May now). Two, I was out of town on April 15 anyway. I’ll explain that in a minute.

Otherwise, my voice is following a similar pattern that was happening before the Botox shots last year: it’s better in the morning when I wake up, and gets progressively worse throughout the day. But even at the end of the day, it’s still usable.

One other thing: although I can feel more tightening in my neck muscles, I am not getting the headaches I had been regularly getting. I don’t know what to attribute this to because I haven’t been taking any pain medications but it’s obviously a good thing and hopefully that trend continues.

Vacation

I just returned from a vacation to southern California. We stayed mainly in San Diego and also visited Los Angeles. It was a good time and it was actually my first time there so it was interesting to see a new city. I had visited Anaheim once before for a few days but didn’t get outside Anaheim so LA and San Diego were new to me.

The first five days of our trip, we were in San Diego and last two days were spent in Los Angeles. There’s a dual reason for visiting Los Angeles. One, since we were already in southern CA, I wanted to set up an appointment with Dr. Gerald Berke, who pioneered and performs the SLAD/R surgery for SD patients. He works at UCLA. I wanted to be evaluated to see if I was a candidate, and to get more information on the procedure. I was very happy with the visit, I got a lot of information and all my questions answered. My wife (who’s a nurse) is very helpful to have alongside on these type of visits because when the doctor starts talking “doctor speak”, she can translate for me. LOL

I have not decided whether or not to have the surgery but I wanted to gather as much information as I could to make an informed decision. This was a great way to gather information, straight from the man himself.

The second reason we went to Los Angeles is that my wife and I wanted to see a taping of The Price is Right in person. Well, really we wanted to be on the show (which unfortunately didn’t happen)…but just being there was so much fun, we are already talking about doing it again the next time we visit. We both wore our Cleveland Indians shirts since we are from the area and we knew Drew Carey was from Cleveland as well…and we hoped it would give us an “in” to either get on the show or talk to Drew himself. As it played out, the latter scenario happened and we chatted with Drew for a few minutes. It was cool. The show itself was a pretty good one, I won’t give away the details but those of you with SD will like this episode. It’s supposed to air May 20. If you do watch, my wife and I are sitting in the 2nd row, far left. I am on the aisle where some of the contestants “come on down” and you can probably see me high-fiving them on their way by.

Xyrem

The last update I have for today is in regards to the drug Xyrem. Way back in September, if you recall, I flew to New York to participate in a study for SD patients. Part of the study was to take the drug Xyrem to see if it would be helpful with my SD symptoms. At the time, I took the recommended dosage under the watchful eye of the doctors & researchers at Mt. Sinai hospital. It had little physical effect on me, similar to maybe having a beer or half of a beer. My voice seemed to smooth out ever-so-slightly, but nothing significant.

Since then, I have not taken the drug (although I still have the full prescription remaining). The main reason I haven’t taken it is, I had a Botox shot shortly after the study concluded and since then, my voice has been good enough that I didn’t feel the need to “waste” the drug on a good voice. Well with my voice in a continued state of decline, I decided to give it another try. So this morning I took the same dose and ***WOW*** did it wallop me. I felt very dizzy and basically felt full-on drunk instead of a light “buzz”. It lasted about an hour then quickly faded away and I was back to normal. My voice, unfortunately, didn’t improve. So I don’t know if it’ll be effective for me but at least I tried. I may try again at different times of the day and see if there’s different results but I’m not too optimistic about it.

That’s all I have for today, but feel free to leave any comments/questions you might have and as always, thanks for reading!

Holding on for now…

Posted by Rob H on January 26, 2013

Hello, today I wanted to give another update on my voice condition as it’s been over a month since my last post. Actually I didn’t realize that it had been that long and my intention is to post more frequently but I’ve been pretty busy at work and home so I haven’t had as much time lately.

In general, if you don’t hear from me for extended times I am doing well. I tend to go about my normal life and mostly forget about my voice condition, which is obviously a great thing! It’s when my voice starts acting up, and changing, that I start posting updates to this blog.

Any time you want to email me, you can do so through the contact form on the Contact Me page. I love getting emails and comments on this blog, in fact I’ve received numerous emails from people all over the world who have found my blog and want to privately message me about something. So keep ’em coming, whether through email or comments in the blog posts.

How is my voice?

I’m sure that’s the main question my readers would like to know. Actually it’s holding steady since the last update. I am still able to talk in all types of situations, including loud environments and telephone calls, as well as drive-through ordering (which is a major challenge for SD sufferers). If I had to put a percentage on my voice, I would guess it’s at about 70% right now. Still no spasms, but I have been noticing lately some muscle fatigue in my neck. So I know it’s on the decline but as I experienced last time, the decline is very slow and may take a month or two.

In the last week, I had 3 days where my muscle strain in my neck produced headaches. The other 4 days I did not have headaches. It’s easily controlled with some Tylenol but it’s still annoying. Of course being winter, everybody is sick off & on and I’ve always noticed a deterioration in voice quality when I have a cold. Since I do have a minor cold, I believe that’s what’s contributing to the muscle strain and headaches. Today as I type this blog post, it’s not as bad so we’ll see how it lasts.

What a difference a year makes

As I was getting ready to type this today, I went back and read some of my old posts from last year. Wow. It’s interesting to hear my voice samples, and to read about my trials & tribulations as my journey was just beginning. This month (January) marks one full year already since I started this blog. And what a year it’s been. It’s definitely been helpful to me to write out my thoughts on this blog, and I believe it’s been helpful to others as well so I am going to continue on for the foreseeable future.

Fortunately I’ve been a pretty good candidate for the Botox treatment and it’s worked pretty well for me. It’s allowed me to live my life like I lived it before this condition. I am weary of continuing with the Botox treatments for years and years…I still want a permanent cure so I think at some point in the future, surgery will be a choice I may make. But I am in no hurry. I want to make an informed decision and learn as much about all the various options out there that I can learn about.

Thank you readers for sticking with me so far, and here’s hoping you find success in the new year 2013 and beyond!

Pre-holiday deterioration (with audio)

Posted by Rob H on December 22, 2012

Well I think I jinxed myself by posting my last update. It was going well but the day after I posted it, my voice dropped a level and was not quite so good as it was that day.

I took a voice sample and have included it below.

Audio MP3


As you can hear, the voice is still not bad but it definitely dropped in quality since just the other day. The recording was taken on Dec 18th, 3 days ago, and it’s still the same today. The weird thing is that this round of Botox is working but not as perfectly as the first round did. At least not yet. I’m still holding out hope that I have several more months left before I need to get another shot, but I sense the shot was not as effective this time. I’ve felt this was a possibility since the day I had it done, if you recall.

Not that I’m complaining because this voice is still perfectly usable and I have no problems communicating in all situations. This includes loud environments, drive-through/fast food speakers, and phone calls: 3 areas I struggled with before I started receiving Botox shots.

If I had to classify my voice right now, I’d say it’s about 80%. My last post, it was at 90%. So it’s still good just not great.

Fortunately for me, it looks like my voice will be fine throughout the holidays which gives me a sense of relief. My family knows about the voice problem so they wouldn’t think anything of it, I just don’t want the pity that seems to come with it. I’m sure those of you reading this that have SD can relate. I don’t want them to feel sorry for me, I just want to do everything like normal. I’ll repeat myself if I have to, no big deal. But as I said, I don’t have to worry about it this year. (Last year was the beginning of it all for me, my voice was declining during the holidays but I didn’t know why yet, and thought I just had an illness).

That’s all for now, Merry Christmas and Happy New Year if I don’t get back on before then. 🙂

Holiday update

Posted by Rob H on December 17, 2012

Hello, it’s been awhile! To be more precise, it’s been a month and a half since my last update.

In this case, no news is good news. My voice has finally stabilized and the side effects are essentially gone. My fears that the shot would not produce a “good voice” have been calmed, as I have had a normal voice for the past month now. By normal, I mean I have most of my vocal range and it sounds normal to others. To me, I can still notice a slightly lower voice quality, probably about 90% of my normal voice but it’s fully functional at that level and I have no complaints.

As I noted in my last post, there were a lot of differences between this Botox and the last time I had Botox in April. The biggest and most annoying difference was the inability to swallow properly. If you’ve never experienced this, try swallowing 10 times rapid-fire and see how hard it gets to swallow after 4, 5, 6 times…that’s how it was for me when eating meals. I would start out at a normal eating pace then slow down as I continued to eat. At my worst (peak), which was about 3-4 weeks after my shot, I was eating at such a slow pace that I could not finish my meals. I was only eating about half of my meals. And even finishing half, I had to be creative. For instance, my swallowing difficulties came when I took solid food bites. Drinking fluids did not give me problems at all. (I know, this is the opposite of the normal Botox side effect which is that you choke on liquids – I did have this problem as well but it was very minimal and generally confined to the first couple weeks after the shot).

So when taking a bite of solid food, I found that I could eat it faster if I took some water and just swallowed the water with the chewed-up food at the same time. Sorta like swallowing a pill. I was never told to do this, I just came up with it so I could eat a little faster. Even doing this, it was slow going and as I said I did not finish many meals in weeks 3-4.

Finally, mercifully, it started going away and for the last month I have not had any problems with swallowing.

I have had what seems like a constant cold for the past month. This has been a trend ever since I had my first Botox shot back in April – frequent colds. They are less severe but more in quantity. I don’t know if there is a correlation or not but I have noticed that when I DO have a cold, my voice quality suffers a little bit. Not enough for people to notice a difference in my voice, but enough for me to notice. I probably lose another 10-20% of voice quality when I have a cold.

Other than those somewhat minor details, my voice quality has been good. I was in a bar recently and was able to talk to my friend over a VERY loud song playing on the jukebox so it was nice to be able to do that. I even commented that I would not be able to carry on this conversation if I had my old voice – as the music was just too loud.

I’m hoping for a similar length of good voice period, as I experienced last time. Actually I hope that since my side effects lasted longer this time, that my good voice lasts even longer but that’s wishful thinking. We will see.

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.

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.