Posted by: Lynne Martinez ®
02/27/2005, 18:26:07
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Hi Carol,Since you're in Canada, not sure how this will relate to your system up there but hope it helps. My disability case was mostly approved (I think) due to the breathing issues as opposed to the vocal (sound) issues. So the answer to your first question, in my case, is "unfortunately no." Tried everything. My severe case of AD-SD had been surgically treated and even though I couldn't do my long-term career position vocally, post-surgery, it was the breathing issues that came later that finally did me in. I'd altered my career after surgery, to accommodate a weaker voice (same field, but in a reduced position with much less talking). Due to the breathing, the hill on the way to my job in SF was an insurmountable obstacle. Then in 2002, the severe breathing spasms (Paradoxical Vocal Fold Movement) began. Bottom-line, my larynx is borderline non-functional and I could go days without talking. Going days without breathing is not an option. Hopefully the disability people up there understand that. "Breathing" is the most critical function of the larynx. Then swallowing. Then phonating. Some of the words/phrases I used on my disability case, which may be helpful to you, are: episodic; exhaustion; effort to speak and breathe; major headaches gasping for breath; need to sleep 12 hours a day, etc. Also, I gave examples of the simplest things I can't do anymore (like get my groceries out of the car and into the house since I live on a hill), due to the breathing problems, plus the doctor report which said a tracheotomy was imminent to relieve pressure on my larynx. If you give them loads of those examples/details, they begin to get the picture. The word "episodic" may be key for you, especially when Botox works or you might appear normal for awhile, because anyone who sees you or listens to you while you seem "normal" might think you're making it up. Or, in the case of your doctor, there are unknowns. In most of our breathing cases, "episodes" are triggered by stress, too much talking, exercise, fatigue, etc. A full day at work (especially with a grueling commute) can provide all of those triggers. Don't know what you do for a living, but hope you can find something that doesn't aggravate the breathing symptoms. Also, it would be interesting to compare notes on the disability system down here in the US, compared to Canada. Down here they do encourage us to work part-time (if possible) while on disability. I'm still trying to figure out how to do that since our public transportation isn't very good, and the traffic is terrible. Good luck Carol. --Lynne (AD-SD; PVFM; Northern California)
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Posted by: snowie ®
02/28/2005, 15:53:32
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Hi Carol,I have Ab Sd compounded by breathing problems from asthma, I did wonder whether it was respiratory dystonia, but have been treated for asthma for some time prior to my Ab Sd, and find that I do respond to the treatment for asthma. I was referred to a pulmonologist, but they didn't know anything about spasmodic dystonia or respiratory dystonia so that didn't help, but tests showed problems with lung capacity and a sensitivity to allergies, which is an indication of asthma. I find when my asthma is bad, my voice is a million times worse, and is quite variable. Some days It sounds pretty good, but fatigue, effort of talking,
being out of breath, stress, or any external aggravations like dust, pollution, allergic reactions can trigger the asthma, which in turn makes it such an effort at times to talk. I was referred to occuaptional health to see the company doctor (as I work for the local council in social services in a job that requires talking all day, every day). I explained to the doctor about both the SD and asthma, and was in a pretty bad way the day I saw him, as I needed to use my inhaler when I was with him and was coughing and fnding it difficult to speak, so he could see what I'm like on a bad day. The outcome of this review, is that the doctor has recommened I cut my hours down to work part-time, 3 days a week, as he thinks 3 days is some thing that I can manage for now, with view to trying to secure some re-training in some thing that doesn't require talking all day, and some thing that is flexible, ie like working from home, or working with inanimate objects in some way, rather than people!! ... like computers or gardening , anything !! lol. I too am having botox injections, and they do help, but their effectiveness is variable, and I often having swallowing and breathing difficulties for a couple of weeks after the injections, so it's a bit of a vicious circle. But, at the moment the advantages of having the botox injections outweigh the disadvantages, as it does relieve the spasms and effort to speak. (We are just leaving longer gaps between the two injections that are normally given approx. 2 weeks apart). One possibility I have been thinking of pursuing, is contacting the local disability advisor re: getting help with re-training under the Disability Act. If Canada is like UK in its set up, then these disability advisors are normally based at the local job centres. I know my circumstances are different, with it being asthma and SD rather than respiratory dystonia, but I think some of the effects seem to be the same, and if I can help in any way then please let me know. Good luck to you, With best wishes,
Snowie
Ab Sd, London, UK PS: If anyone knows anything about Ab Sd and asthma then can they please point me in the right direction, as it seems to be difficult to find an expert in both conditions. Thanks.
Modified by snowie at Mon, Feb 28, 2005, 15:59:26
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Posted by: Carol near Toronto, Canada ®
02/28/2005, 16:09:38
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Thanks both Lynne and Snowie for your well-thought-out responses. They are helpful. I guess that what I am seeing is that with my rare variations on already rare laryngeal dystonia, I am unlikely to find someone with exactly the same situation as mine. In addition, my treating ENT has never seen anyone with exactly my symptoms, either, so, in some ways, we are breaking new ground with my disability claim. I'll just have to take it one day, and one form, at a time. Carol
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Posted by: Lynne Martinez ®
02/28/2005, 22:07:15
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Hi Carol,If it's any consolation to you, and other "unique" laryngeal cases, I've consulted several world-class experts (both on e-mail and in meeting them over the past years at SD and dystonia symposiums) and they told me the same thing. My SD/laryngeal case is "atypical" and several experts said they had never met anyone with a case like mine. Nice to feel special, right? The main thing that helped (for me) is getting out there -- contacting specialists, having others speak for me sometimes, going to SD and dystonia symposiums and meeting the docs in person over the years. Past information/resources helped with my disability case, but hadn't solved my medical case. Last year a world-class laryngologist observed my case and noted its uniqueness, such as you've experienced also. The doctor told me that, increasingly, skilled cutting-edge laryngologists are becoming intrigued (and more knowledgable) with the difficult voice/breathing cases, as opposed to cases that can be easily treated with Botox. Some docs actually appreciate the challenging cases. Not sure if that observation helps, but you're definitely not alone in an atypical case. Also, that doctor was not the first one to make that comment on my case. He just happens to be the most accessible one, so I'm willing to be a guinea pig. Might mean more surgery. It's scary though. As before, good luck. None of this is easy. --Lynne (AD-SD; PVFM; Northern California)
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Posted by: Marilyn M. ®
03/15/2005, 10:53:27
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Carol,I don't know if this will help you in your situation, but one of the things I did when I was struggling with breathing problems due to laryngeal spasms was to gradually build up my speed and time on an exercise bike. While I was exercising I gave constant attention to how I was breathing. I wanted to develop the diaphramatic muscles so that my breathing would be strong. My hope was that the strength of my breathing would start to overcome the laryngeal spasms. During this time my breathing did improve. It seemed to me that even though I still got winded sometimes, I never felt like I was gasping for air as I had before. I am a trained singer so I already knew about diaphragmatic breathing. This type of breathing allows the throat to relax and the breath to be strong. If you can find a trained singer I'll bet they can help you with this. What I paid attention to during my exercise was my posture (sitting up straight), shoulders relaxed, chest high, and breathing from the belly. (When the breath comes in the belly goes out and when the breath goes out the belly goes in.) I worked up to about 45 minutes on the bike. Aerobic exercise also just makes you feel better in general. :-) During one of your better times after you get your shot might be a good time to begin building up your endurance. My problem turned out to be MTD brought on by a bite misalignment - at least that's what it seems to have been. I was helped by bite splint treatment from a Pankey Institute (Florida) dentist and jaw realignment surgery. Before the bite treatment I received BOTOX for my "SD with breathing dystonia." BOTOX did help with the breathing. It was the breathing difficulty that would drive me to return for another BOTOX injection. (I had a total of four in 1995 and 96.) The voice problems were easier for me to handle than the breathing. I'm sure you understand. I no longer have significant breathing or speech problems. I think I still have a little muscle tension in my throat. Sometimes I am aware that I can't get a word started easily. I'm a music teacher and when I am teaching that can be kind of frustrating. But I really think that can be helped with the type exercise I have described and working with some of my speech therapy exercises. I guess I need to get busy myself! I have also found that stress has an effect on my voice. I am being treated with medication for GAD (generalized anxiety disorder - how's that for a name!) and adult ADD (attention deficit "disorder" - I prefer to call it a "difference" because in a lot of ways my difference is an advantage.) I am much happier since getting medication and good couseling for those. I hope this helps some. Marilyn in Texas, USA
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