Posted by: hoarse whisperer ®
05/12/2008, 00:09:28
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Dear SDnoMORE,Good for you! This is terrific that you’ve found a way to recover a good speaking voice. Do you suppose it’s possible that you have Muscle Tension Dystonia (MTD) rather than Spasmodic Dysphonia (SD)? As was discussed in detail at the recent Annual SD Symposium in SLC, it can be extremely difficult for most doctors to distinguish between MTD and SD. However, unlike SD, MTD can be cured. The way it is cured, most of the time through speech therapy, is almost exactly what you described – practicing proper breathing techniques, humming, saying repetitive words or phrases, reading out loud, exercise and relaxation, etc. Some people with MTD may also experience relief with Botox simply because it helps relax the muscles. In contrast, SD is actually a neurological disorder that cannot be cured at this time. Through research at the National Institutes of Heath, they’ve discovered (through MRI’s of current SD patients and brain dissection of SD’ers who donated their brains for this purpose): 1. Reduced activity in the Thalamus and Basal Ganglia. 2. Identification of the specific neuropathway within the Cortico-Bulbar System that is involved with SD. 3. Axonal thinning and white matter abnormalities along this neuropathway. 4. Structural differences in the Thalamus and Cerebellum. 5. Relationship between the severity of SD and increased diffusivity in the Thalamus. 6. Unusual accumulation of mineral deposits in the regions of the brain showing functional and structural abnormalities. While your list of recommended exercises are worth a try, certainly can’t hurt, and may even be beneficial to some people with SD, there should also be concerns about creating false hope and expectations and then even more frustration for those who do suffer from SD. Unfortunately, accurately diagnosed SD is a neurological disorder that cannot be cured and no amount of humming can change the brain abnormalities that cause it. Best of luck to you and I hope you continue to have a good voice. Lori
ABSD and VCD since 2003
Dallas, Texas
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Posted by: Lauren L ®
05/12/2008, 07:11:41
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I’ve had AB/SD for ten years and have read this bulletin board from time to time since 2001. Every now and then, we see a post from someone who has made progress with his or her voice and who is kind enough to share information about how this was achieved. When this happens, we regularly see a response from someone who says that this person didn’t have SD, that what helped them won’t work for SD patients, and that they are creating false hopes. To the contrary, it seems to me that this point of view may be dashing real hopes.Often, the people who say they’ve made progress have been diagnosed and/or treated by reputable doctors and sometimes the same doctors that NSDA says are the best in the business. Consequently, the inferences I would draw from the improvement of these patients is different. Perhaps the person really does have SD and has stumbled upon some method that has made his or her brain operate differently to overcome or to compensate for the manifestations of SD. Given that SD is known to be brain-based and given that well-documented research on neuroplasticity evidences that the brain can learn to operate differently in many respects, why should we think that it is impossible for the brain to learn to modify its performance to alleviate some or even all of the impact of SD? There is a huge number of documented cases of people having damaged brains and recovering function that was lost or impaired. Why should we think this is impossible for us? Rather than dismissing the people who have experienced improvement, I believe we should look to them to learn more. Can we codify what they did into a program that can help more people? Is the fact that they believed they could get better a factor in their actually getting better? Research into how well placebos work is astonishing and provides yet another example of how little we understand about the brain and how robust its performance can be. Let’s not blow off people who have improved and let’s not assume that improvement is impossible. Our knowledge of the brain is far from complete. Maybe these people are on to something and we should be listen to and learn from them rather than dismiss them and accuse them of creating false hopes. It could be that the information these people have becomes the basis of our best hopes. Thanks for sharing with us, SDnoMORE. I believe you give us hope that even if SD cannot be cured, perhaps it can be overcome, at least to some degree.
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Posted by: Laurie ®
05/12/2008, 08:35:16
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One thing I've noticed over the years which seems to be the rule rather than the exception is that people have wildly lower standards than I do when it comes to defining what they see as improvement to their voice.There are several in my support group and who I've met in person who say they were helped by acupuncture, retraining classes, arbitrary techniques, etc. and say their SD is better. But when you listen to these folks, you hear their SD symptoms. So I think it's easy to post on a BB all these theories and promote thousand dollar classes undercover, but at the end of the day if these classes or techniques actually helped people, there would be NO IDENTIFIABLE REASON why the leaders of the classes and/or the patients themselves should shun the idea of their results being objectively and blindly rated by experts in the field. There are two such individuals who lead retraining and/or "curative" classes who refuse the suggestion of having their results verified by outside objective blinded raters and to me that speaks volumes. They don't work! In talking about the placebo effect, another thing to consider is the emotional "high" one may gain after attending such a classes, NEEDING to believe that something will work as SD can be so devastating, only to realize weeks, months later that it didn't work or that he/she needs to return to this class (still convinced it will work, unfortunately), etc. Or how easy it is to throw around theories of neuroplasticity, the results of recovering patients with other neurological disorders, etc. and create false hope in those who may not be able to filter the fancy terminology with some critical thinking skills. But in the end, the main problem with all of these types of claims is that no one will prove (objectively, blindly -- not "my friend told me the other day that I sound good.") that the results are real. I say, who cares about theories one can make "sound" good. Why not just objectively prove the results (again not, he/she said, did, my boss thinks, my husband, the girl in the elevator...)? So while I don't see everyone who posts improvement as having ill intent, and I think that some may indeed have SD, they may not have an objectively verifiable improvement in their voice. To me, when it comes to some of these organized clinics, it's preposterous. If anyone had a real cure/improvement/overcoming program, he/she would prove the results outside of subjective comments by the class participant and/or instructor who charges several thousand dollars. Otherwise, it's a huge dis-service to our community and speaks volumes about the extent to which it actually works. If it was THAT successful, it'd be THAT easy to prove. So I'd challenge any of these folks to be mixed in with 10 other SD patients and then blinded evaluated by outsiders who know nothing of who went through the class and who didn't, who read the book, came to a realization, etc. and those who did not. So I agree, it's not always an SD vs. MTD thing, it's more a refusal to verify the results. It amazes me when I meet people who will speak with their breaking voice right in front of me that X helped them. And I'm thinking, "OK then!" Laurie
Modified by Laurie at Mon, May 12, 2008, 09:04:33
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Posted by: Lauren L ®
05/12/2008, 08:59:00
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I agree with you Laurie - SD patients definitely should seek information that independently verifies any treatment before they spend money on it. I also know what you are talking about with respect to the people who will not submit their treatments to scientific analysis for verification of effectiveness. Unwillingness to have a treatment regimen evaluated should be a clear signal of caveat emptor! Too bad that these "treatments" don't require the FDA approval for safety and efficacy that a medical device or pharmaceutical requires. (I suppose we can assume they are safe, however, when they don't do anything at all. :))My point is that if people have improvement, even if it is not the 100% removal of symptoms that you seek, they should be heard. They may have knowledge that will help people. I would guess that there are many people who cannot get botox, or don't want botox, or botox doesn't work for them, and these people might be thrilled with a 50% improvement. Just because improvement is not to the point of perfection does not mean that it is without value. Also, I did not get the impression that SDnoMORE is trying to sell us anything. As an aside with respect to placebos, there is recent research that shows with respect to diseases/disorders with measurable attributes that treatment with placebos doesn't just make people think they are better, they actually ARE better. Amazing stuff. Perhaps what the world needs is double strength placebos. :)
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Posted by: hoarse whisperer ®
05/12/2008, 09:56:18
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It was not my intent to "blow off" anybody. In fact, I purposely wrote my message to be as supportive and open to suggestions as possible, while also being realistic about the verified medical evidence regarding SD. The main point of my response was in the second sentence:"Do you suppose it’s possible that you have Muscle Tension Dystonia (MTD) rather than Spasmodic Dysphonia (SD)?" Although I have to admit that when someone's first and only contribution to the bulletin board is a "cure for SD" that sounds exactly like those being promoted by classes that cost thousands of dollars and, like Laurie said, who refuse to have their results objectively and blindly rated by experts in the field, I do feel more skepticism than if the post was from someone who had actually participated on this board before. Lori
ABSD and VCD since 2003
Dallas, Texas
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Posted by: Gary Lea ®
06/14/2008, 23:38:24
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I think the point is that many, if not a majority, of us have done what SDnoMore did, without significant benefit. Are any of us not aware of the possible benefit of directed humming, or otherwise using strategies to minimize the spasms that define SD, at least AD SD? It is always "good news" when one of our dysphonic friends finds these efforts to bear fruit. However, I must agree that if something like humming and aerobics, conscientiously applied overtime, bears fruit, then the person does/did not have SD by definition.Gary
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Posted by: SDnoMORE ®
05/12/2008, 15:10:03
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Dear Laurie,
I started this discussion by describing the techniques that have greatly improved my speaking ability. You ask for proof. I have many tapes of sermons I preached while suffering greatly from the affects of SD. There were many weeks I had to have someone fill the pulpit in my place because I could not be understood by the congreagation. This was during the time that I was being treated by the Director, Division of Otolaryngology Head and Neck surgeon at Scott & White Science Center in Temple, TX. I was also having sessions with the Chief, Speech Language Pathology Ph.D., CCC-SLP.
Today, after 2 years of my previously described technique, I am preaching every Sunday and teaching 2 classes per week as well as other public speaking engagements. I am happy to allow anyone to compare my voice, to have the proof!
I have nothing to gain by posting these comments. My only desire is to share hope. SDnoMORE - Tim Kidwell
btkid32@hotmail.com
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Posted by: SDnoMORE ®
05/12/2008, 09:19:54
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Thank-you for your kind reply. I was amazed that the first response to my post was one of doubt. My bout with SD has not been easy. My first symptoms were noticed over 8 years ago. I was misdiagnosed by several doctors the first 3 years before having 3 ENTs agree that I definitely was suffering from SD. As a minister my voice is a very important tool. To say I was frustrated is putting it very mildly. Depression was constantly knocking at my door. Botox gave temporary, but inconsistent relief. The improvement I enjoy today has not come easy. I have worked very hard daily to achieve my results. But I have been determined to regain my voice. I refused to accept what the experts were telling me (that my voice would never get better and would most likely continue to digress). Remember - experts built the Titanic and it sank on its maiden voyage. I feel sorry for people who swallow the "no hope" pill. They are destined to fulfill their own prophetic message of doom. That is their choice. But I am not the only one who has enjoyed great relief from SD through the techniques I have described. It is not a magic shot of instant improvement. It is real work offering real hope. To those with SD I ask, "How much hope is offered on the path you are following right now?" Tim Kidwell
Minister - Church of Christ
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Posted by: debbieo ®
05/12/2008, 15:59:45
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Mr. Kidwell,
I'm on your side. I was diagnosed in early 2007. Never once did I even consider Botox. It just was not for me. I hate taking aspirin, so the thought of a quarterly shot was this side of repulsive. However for those that it helps, go for it. I too have just about licked my AB/SD with a variety of methods. And I too was diagnosed by a leading ENT/Otolaryngologist. You have to pursue the avenue of treatment that is right for you. As you did, I pursued the methods that I was comfortable trying. Breathing, exercise, therapy, massages, chiropractic adjustments, and anything else that made me feel better. My voice was everything to my career, without it I was disabled. I have what I call hitches every now and then. If I know the person I'm talking to and I drop an h or a c they will say "I heard that." It really is a point of humor nowadays but it wasn't always that way. I do believe in alternative methods for treating maladies. I refuse to call mine a disease, but I fight it like a worthy opponent. So once again whatever works for you try it. Everyone keep the feisty discussion going. We can only learn from each other. No magic wand is going to make this go away, so do the best you can. Have a good day everyone.
DebbieO
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Posted by: hedgehog ®
05/13/2008, 01:08:21
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I can relate to the information you shared. When my voice is breaking badly in conversations with others, I wish I could remember to breathe, but for some reason, I don't. When I do breathe (usually because my husband has noticed my difficulty, and whispered "breathe"), the quality of my voice does improve considerably. Although it's never perfect, it's good enough. Over the past several months, I have done breathing and humming exercises for about 5 minutes each day, because I have noticed that my voice is much worse on the days I haven't done them. After reading your post, I am thinking I should invest a bit more time. Thanks for giving so much detail about what worked for you.
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Posted by: snowie ®
05/13/2008, 05:10:39
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Hi there,This is an interesting discussion. I think it's hard to keep a balance between hope and false hope, and no hope at All. I think I personally would give up if there was no hope, it's hope that keeps me going! ... ... I have AB SD (or possibly mixed) and was diagnosed by a renowned Consultant here in the UK, and one significant thing I have noticed is that when my breathing is particularly bad, my voice is very bad, they seem to be very closley linked. I will have a go at some of the exercises suggested ... Thanks all for taking the time to contribute to this discussion, Good Luck! Snowie
AB SD, Devon, UK
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Posted by: chaanz ®
05/13/2008, 08:45:58
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..and now for my 2cents worth. Some time ago on this bulletin board, I described my journey with voice therapy. The conclusion I came to at that time and stick with even now, is that improper breathing significantly exacerbates symtoms of SD. While I believe that most of the SD community pretty much concurs, there is no cure for SD at this time. I believe that to be so but it is also my personal experience, that some, if not most SD, is made much much worse through improper breathing habits. The actual 'spasm' is a short glitch, while the subconscious effort to cover the glitch (by attempting to control it without airflow) is even worse than the spasm itself. i.e. the spasm is gone in a hiccup of time, while the sentence without air continues until it's finished. I hope that makes sense.
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Posted by: mariaa ®
05/24/2008, 18:35:47
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"believe that to be so but it is also my personal experience, that some, if not most SD, is made much much worse through improper breathing habits. The actual 'spasm' is a short glitch, while the subconscious effort to cover the glitch (by attempting to control it without airflow) is even worse than the spasm itself. i.e. the spasm is gone in a hiccup of time, while the sentence without air continues until it's finished. I hope that makes sense"
That statement is SOOO true omg. I do that!! I hold my breath to cover the spasm!
thanks, Im not alone
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Posted by: TMK ®
05/13/2008, 08:35:55
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Congratulations on your improvement. I have read this thread of conversation with great interest. I was diagnosed with ABSD in January of 2007 and, according to my speech therapist who is very experienced with SD, I had a BAD case of SD. I diligently worked on the breathing and vocal exercises I was given and, for about 6 - 7 months, it looked like I would never get my "normal" voice back at all.However, I continued to be a fanatic about my exercises - many of which echo the ones posted by SDnoMore in his post - the reading out loud, the breathing. I wasn't able to hum at all so that one was out but . . . Anyway - after about 10 months of therapy I noticed that every once in a while a word would "pop out" normally when I spoke. My therapist and I took those words and worked with them gradually building my voice. Now I can pretty much talk normally. When I say normally, I do not mean that all of my SD symptoms are gone - I still have problems with unvoiced consonants and different things at times. But - I am able to speak and the sound of the speech is close to what I sounded like pre-SD. I don't consider myself cured. I just think that somehow, I managed, through a LOT of HARD work, to retrain my vocal chords to allow me to talk. I don't question it - I rejoice in it! If you would like to hear the difference in my voice - go to my podcasts and listen to the early ones and the most recent ones. By the way - what kind of "proof" would be needed to show improvement? TMK
ABSD
Dallas
Related link: Learning To Live With SD
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Posted by: Catherine1011 ®
05/14/2008, 07:32:32
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Congratulations, SDnoMore! What an interesting conversation. I do believe that SD can be helped a lot with voice exercises, breathing, relaxing, etc. I also have MTD along with SD so I find my whole jaw area tightening up for no reason. I have to consciously focus on it and relax it. However, I still have some hesitation, shakiness to my voice especially if it's tired from speaking. I guess my stance is, I believe the exercises could help greatly but not cure the underlying illness completely. Thanks for posting and I will do more daily to improve my voice.
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Posted by: SDnoMORE ®
05/14/2008, 10:50:32
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Dear friends,
I came upon this site purely by accident while searching the internet. In actuality, my wife found it and told me I should post some of the information that I had found beneficial during my journey to improvement. I did not realize I would be stirring such deep emotions among my fellow SD group members.Please understand:
1. I have felt the dread of talking on the telephone.
2. I know the loneliness of sitting quietly in a restaurant while the rest of my family and friends are conversing.
3. I understand the embarrasement of trying to communicate to others through a portable PA system.
4. I have known the intimidation of trying to order food at a drive-through window.
5. I have endured the choking and loss of my voice for weeks as a result of the botox injections.
6. I have experienced the frustration caused by others not being able to understand what I said.
7. I have seen the looks of pain on those who were trying to listen to me speak and of those who wondered what was wrong with me.
8. I have been asked why I sounded like an old man.
9. As a minister I had to concentrate on "how" I was going to speak rather than "what" I was needing to say. For others, talking was just a matter of opening their mouth. For me it took much effort.
10. I have experienced the exhaustion that came from continuous speaking for just a few minutes.
11. I have struggled with the daily anguish that was brought on by the uncertainty of my future. My friends, I understand! But today these things are no longer a factor in my life. I speak freely without fear or embarassment. But as I have previously stated, my improvement did not occur overnight. I remember that the appeal of botox shots were the relatively fast results. But they were temporary - every time! And the side effects were sometimes worse than the SD. It was only when I discovered a technique that allowed me to "find" my voice that I changed my outlook on life. If I could find my speaking voice (even for just a few seconds), I believed I could find and maintain it -IF- I worked hard enough. My mindset had changed. No longer would I swallow the "no hope" pill all the experts were prescribing. According to them my destiny was sealed. I was determined to prove them wrong. I have described the foundation of my techniques in the original post. But the most important factors behind my success have been:
1. The desire and belief that I would succeed.
2. The refusal to give up. Lack of obvious improvement must not interfere with your routine. You must stick with it!
3. Hard work. I am afraid that many SD sufferers will never improve because they are too lazy to keep on keeping on! I have not had "fun" iproving my voice. But every minute of effort has been worth it. I have my life back. Your voice did not deteriorate overnight. Be patient, but be persistent. I have felt your pain. I invite you to feel my joy. Tim Kidwell SDnoMORE
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Posted by: Catherine1011 ®
05/14/2008, 16:42:51
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Well said, Tim, although you may stir something up with the term "lazy."I think it's more will power and determination. I feel the reason I'm not really bad is because I focus on it not getting any worse. Most people cannot tell I have a voice disorder even though I can.
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Posted by: chaanz ®
05/15/2008, 08:12:31
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Lazy is an apt description for me. I don't practice breathing, relaxing, etc. like I know I should. Or maybe its because I don't feel it will do any good when actually I Know that it will. I agree with Tim with that the breathing exercises go a long long way for some to improve voice quality and I agree that I'm lazy when it comes to following though. It takes a great deal of self discipline to learn how to breathe correctly again after months or years of subconsciously learning not to but I feel it can be done.
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Posted by: Mary Bifaro ®
05/15/2008, 15:19:28
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Dear Rev. Kidwell:I am pleased that you have found a method of treatment that has resulted in an improved SD voice. I've had abductor SD since 1987. Botox injections haven't improved my SD voice so far, and neither has voice therapy. However, I have great hope when I think about SD. I put my hope in the important work that the NSDA has been doing since 1989. Being involved in the SD community since 1989 has brought great meaning to my life. I continue to learn from fellow SD patients. Reverend Kidwell, I'm glad that you found the NSDA. Our patient-driven organization works hard to raise awareness about SD, raise funds to advance medical research into SD and to provide support to those affected by SD. Sincerely,
Mary Bifaro
Abductor SD since 1987
Charlotte, NC
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Posted by: Maria ®
05/19/2008, 07:16:58
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Hello!Congratulations to the progress and thank you for sharing your success story! You are very right in pointing out that one year of hard practice is a lot for most of us, especially when you're not sure there will be any improvement! I was wondering if your humming had breaks and stops in it when you started? Or was the humming always smooth? My humming has breaks in it, unless the voice get really shaky (weird). I also wonder if you had Botox during the years you did the exercises or had you quit Botox completely when starting out? Did you do it all by yourself or did you see a speech therapist every once in a while about pitch and stuff?
Did you basically hum in the pitch you would talk in or in the pitch that was possible to hum in? A lot of questions... I hope you have the time to answer them :-). I'm interested in trying the concept. Regards,
Maria
(Scandinavia)
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Posted by: SDnoMORE ®
05/19/2008, 08:42:00
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Maria,When I first started humming my voice was at its worst.
I had stopped taking the botox 6 months before.
Yes, my voice had breaks in it even when I hummed.
At the beginning I concentrated on just humming - not so much on pitch. Pitch is important, but not as important as breathing. Two weeks into my intense humming sessions I started using a machine that showed me where my voice was on the musical scale (pitch). There are some voice programs that can be downloaded off the internet. I started trying to keep my voice at a particular note range. Not too high or too low. I saw much improvement within one month - but I was dedicating 5-8 hours a day of almost constant humming. Did I have to spend this much time humming? I don't know, but I didn't have anything else to do. I could not work without my voice. My voice became most consistent when I started breathing. While I was taking botox I saw a speech therapist. She tried to help me breath, but even though I understood what I needed to do, execution was impossible. It was not until I started doing aerobic exercise and gasping for air as I talked that my body began to retrain itself. I had to breath or pass out while exercising. The ability to talk and breath while exercising slowly began to carry over into talking when not exercising. The first year I exercised every day. Now I exercise on my eliptical machine every other day and no longer have the need to concentrate on the voice exercises. With proper airflow my speech is stabilized even when my pitch is not perfect. I hope this helps. Your SDnoMORE friend, Tim
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Posted by: Maria ®
05/19/2008, 09:44:34
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Hi Tim!Thank you very much for the details! The humming is far easier when I do something physical, like cutting the lawn while humming than when I only concentrate on the humming. So breathing is probably crucial (my breathing patterns are terrible). I will certainly keep on trying to talk/hum while exercising. I totally understand the feeling "I didn't have anything else to do". Not much you can do (or even want to do) when your voice is a complete mess. I have become quite isolated the last year, even though I still have a job. Thanks again for sharing! Maria
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Posted by: Colleen ®
05/20/2008, 14:31:35
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Maria,
I have been humming on my way to work, and a co-worker noticed how good I sound. I do not understand how you can read out loud and humm instead:-)I have tried it but it doesn't work..thanks for the positive posts, this beats the doom and gloom poor me I am stuck like this for life posts.
Do something about it people! look for some answers! thanks
Colleen
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Posted by: Colleen ®
05/20/2008, 11:09:47
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Thank you so much for sharing your story on humming. I was at a SD symposium in Az about 7 years ago and met a gentlemen who told me humming helped his voice allot too. He sounded great so I asked him what helped and he said humming. What does it hurt to hear other ways than Botox and surgery that might help our voices. I can't believe someone would complain! Why not try it,maybe that could be your answer too. It may not cure it but you may sound better. Its better than sitting there feeling sorry for yourself. Why not find some answers! I tried botox and surgery and so far humming,breathing and laughing have worked the best!
Colleen
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Posted by: hedgehog ®
05/20/2008, 19:28:46
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Thanks Tim, and everyone else who has contributed to this discussion. Since my earlier post, I have been giving a lot of thought as to why combining aerobic exercise and vocal exercise, might be effective in producing better vocal performance. Perhaps it is because aerobic activity forces us to breathe deeply as we speak (ie. good airflow = better voice), in a situation where our bodies are under physical stress. This stress may have similarities to the stress and anxiety we can feel in real world situations, such as when we hear our voices breaking up, whilst talking to others. It may be that combining physical and vocal exercises, helps retrain the voice to work more effectively, in situations where we feel stressed.
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Posted by: Debbieo ®
05/20/2008, 20:40:34
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I think that everyone is hitting on two important points that have helped me immensely. 1. hum to create resonance. I lost the ability to resonate with my SD and humming and/or using a kazoo helped. The kazoo is a lot more fun although funny looking with you're driving. But try it anyway. Using the kazoo is a coordinate exercise that's really good for your voice. 2. exercising to develop good breathing. I used a breathing coach to get mine back into shape (along with other things). Like everyone else my breathing was awful. Although, I could exercise at any length and not be out of breath. It wasn't until I spoke that I was breathless. Coordinating the breathing is essential to achieving a voice. Over time that voice will become better. How far your voice is dependent on the severity of the individual's voice. I found that when I spoke while on the treadmill or right after finishing my voice was great. This has been a great discussion on the bulletin board. Everyone sharing their successes and failures is why this bulletin board should exist. Debbie
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Posted by: Colleen ®
05/23/2008, 10:35:22
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Where do you get a Kazoo?
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Posted by: chaanz ®
05/24/2008, 19:57:14
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why, at a kazoo store, of course :)
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Posted by: Catherine1011 ®
05/25/2008, 08:37:12
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LoL! Probably at a music store? Or some toy stores have them.I have been humming more, too. I'm thinking maybe the reason my SD is mild is because I have always exercised and done relaxation for quite some time with deep breathing. Also, I love to sing so will sing in the car and sound fine. Maybe this all helps keep mine mild!
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