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All rights reserved. --> <title>Utah Spasmodic Dysphonia Support Group</title> <meta http-equiv="Content-Type" content="text/html; charset=ISO-8859-1" /> <link rel="stylesheet" href="mm_lodging1.css" type="text/css" /> </head> <body bgcolor="#999966"> <table width="100%" border="0" cellspacing="0" cellpadding="0"> <tr> <td width="15" nowrap="nowrap"><img src="mm_spacer.gif" alt="" width="15" height="1" border="0" /></td> <td height="60" colspan="3" class="logo" nowrap="nowrap"><br /> UTAH SPASMODIC DYSPHONIA SUPPORT GROUP </td> <td width="40">&nbsp;</td> <td width="100%">&nbsp;</td> </tr> <tr bgcolor="#ffffff"> <td colspan="6"><img src="mm_spacer.gif" alt="" width="1" height="1" border="0" /></td> </tr> <tr bgcolor="#a4c2c2"> <td width="15" nowrap="nowrap">&nbsp;</td> <td height="36" colspan="3" id="navigation" class="navText"> <a href="http://www.utahspasmodic.org">HOME </a>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; <a href="next.html">NEXT MEETING </a>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; <a href="notes.html">MEETING NOTES </a>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; <a href="new.html">WHATS NEW </a>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; <a href="mailto:smgreene09@comcast.net">CONTACT</a>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;</td> <td width="40">&nbsp;</td> <td width="100%">&nbsp;</td> </tr> <tr bgcolor="#ffffff"> <td colspan="6"><img src="mm_spacer.gif" alt="" width="1" height="1" border="0" /></td> </tr> <tr bgcolor="#ffffff"> <td width="230" colspan="2" valign="top" bgcolor="#a4c2c2"><img src="hands.jpg" alt="Home Page Image" width="230" border="0" /> <table border="0" cellspacing="0" cellpadding="0" width="230"> <tr> <td width="15">&nbsp;</td> <td width="200" class="sidebarText" id="padding"><p>One who gains strength by overcoming obstacles possesses the only strength which can overcome adversity.</p> <p>- Albert Schwitzer <br /> &nbsp;<br /> </p></td> <td width="15">&nbsp;</td> </tr> </table> </td> <td width="50" valign="top"><img src="mm_spacer.gif" alt="" width="50" height="1" border="0" /></td> <td width="440" valign="top"><br /> <br /> <table border="0" cellspacing="0" cellpadding="0" width="440"> <tr> <td class="pageName"><p>Meeting Notes... </p></td> </tr> <tr> <td class="bodyText"> <p><b>January 24, 2012</b><p> <p>We discussed a work sheet we had regarding "New Years" resolutions as to how we can help improve our lives with our SD. <p>Examples could be becoming part of a study, getting into a group where you need to speak more or even doing something to take your mind off of your SD by reading more books or taking a credit or non-credit course for yourself. <p>We also went over a work sheet I had gotten from Mary Bifaro regarding hints for coping with SD. There were a lot of good comments such as, focusing on your words, not your voice, saying up front to a person or group that you have a voice disorder and you hope they can understand you. <p>We also talked about some negative feelings we have about SD regarding communicating with other people. Examples would be sometimes people can get impatient listening to a slow voice. Some people cut you off and finish your sentences for you. People asking if you re okay, can be really frustrating! <p>Other things we have trouble with are speaking on the phone, (the really big one); feel like we can t participate in group discussions and even one on one if we don t know the person very well. <p>A couple of ideas were brought up at the meeting last night. Mary said she saw a little bit of a news clip regarding the use of Ultrasound for stroke victims who have tremors. We were talking whether that may work for us who have tremors with our SD. We will do some investigating on that subject. <p>Another good idea was brought up by Pat s husband (so sorry, Pat s husband, I need to get your first name)! His idea was to write up a letter from our group and give it to Dr. Smith to sign and possibly send out to his patients with SD regarding our Support Group. I will start drafting the letter right away. I think it definitely would make a better impact with Dr. Smith s name rather than just me signing it! <p>We missed the ones who could not be there last night, Ed, Elaine & Steve. Hope Ed and Elaine are having fun and hope you, Steve, are feeling much better from your flu! <p>Our next meeting will be March 27th at 6:30 pm. <p>Until next time& & & .speak up!!! <p><b>October 27, 2011</b><p> <p>We had our quarterly SD meeting tonight with Dr. Marshall Smith as our guest speaker. <p>We thank Dr. Smith for attending and as always, bringing us more valuable information regarding SD and any new developments regarding the treatments available. <p>The subject I had asked Dr. Smith to speak on tonight was the surgeries that are available for SD patients and the type of surgery he himself does. <p>Dr. Smith gave us information on a few surgeries that are being done for Adductor SD. <p>He himself does a surgery called  laryngeal adductor denervation-reinnervation . It consists primarily of doing a bi-lateral cut of one or more nerves in the voice box and actually  plugging in another nerve to take the place of the  bad nerve (for lack of a better word)! <p>The average follow up for this type of surgery is approximately 49 months. In patient surveys from 83 patients, all showed improvement. The results can vary with the patient getting relief for a duration of 8 months to 6 years approximately. Eventually most of the patients end up going back to botox for treatment again. <p>Improvement in voice may not be  life-long , but for several years (how long and to what extent is not known for sure). <p>Dr. Smith said he does approximately 2 surgeries a year of this type. Note it also works usually just for Adductor SD and not Abductor SD. <p>It seems for now anyway, botox is the way most people with SD are getting relief, for a few months at a time, before they have to be injected again. <p>Thank you again, Dr. Smith, for the valuable information and for answering all our questions and concerns regarding Spasmodic Dysphonia. <p>Until we meet again after the holidays, speak up& & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & . <br> <p><b>June 21, 2010</b> <p>We had our bi-monthly SD meeting tonight. <p>Our guest speaker was Dan Houtz, who is a speech pathologist and works at the University. We appreciate him speaking at our meeting and he had a lot of valuable information for us. <p>Dan went over the differences between Adductor & Abductor Spasmodic Dysphonia. He gave some tips regarding speaking with each one of those. <p>For example, with Adductor SD, you would want to decrease the loudness with which you speak, where as, with Abductor, you could speaker higher or even lower sometimes to get better results. <p>Adductor is definitely the most common of the SD s, with only about 10% of the people have the Abductor SD. <p>Dan also talked about tremor with dystonia. It s not uncommon for people with SD to have a tremor somewhere else in their body. The same can be said for having a tremor and that resulting in a voice SD. <p>The tremor in the body, however, needs to be treated by a physician and not treated as SD as the voice is. <p>Speech therapy can really help if you have a lot of tension surrounding the voice box. Speech therapy can also help in many other cases related to SD. <p>The best thing to do is to be diagnosed to see if speech therapy can help you is to contact Dan at the University at the following number& & ..801-581-4956. <p>We also would like to welcome back Ed who attended our meeting the last time we were together and to welcome a new member who was with us tonight, Pat. I hope this was an interesting and valuable night for you both and you will continue to meet with us. <p>Until next time, speak up& & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & .. <br><br> <p><b>Tuesday, March 29th</b> <p>It was a good meeting with Kristine Tanner , who had a lot of good information for us regarding the interviews that were done a couple of years ago on many people with SD. <p>A few key factors that were found are as follows: In general, SD seems to have a gradual symptom onset, with some worsening during the first year or two, followed by a plateau thereafter. <p>SD is likely multifactorial, involving both genetic and environmental factors. Viral infections , along with intense voice use, may trigger the onset of SD in genetically predisposed individuals. <p>An immediate family of meningitis, tremor, tics, cancer and compulsive behaviors; an extended family history of tremor and cancer. A personal history of mumps, tremor, intense occupational and avocational voice use, and a family history of voice disorders. <p>To read more about the findings, you may click on the links below to read the studies. <p>I would also like to extend a warm welcome to Ed, who joined us for the first time this month. We enjoyed getting to know you a bit and are looking forward to you being in our group! <p>Until next time& & & & & .Speak Up! <p> <b>Study Reports</b><br> <a href="/risk.pdf" target="_blank">Risk and Protective Factors</a><br> <a href="/sd.doc" target="_blank">Spasmodic Dysphonia: Onset..</a> <br><br> <p><b>January 20, 2011</b> <p>We had our first SD meeting of the New Year tonight with a wonderful guest speaker. <p>His name is Marcus Mumford, an attorney here in Salt Lake. He had a wonderful story about his life and is a very positive, motivational and inspirational speaker. <p>You see, when Marcus was born, he stuttered. When he was a little boy, his mother encouraged him to get out there and sell those Boy Scout or school chocolates. It wasn't easy for him and he had the door shut in his face more than once. <p>He persevered and became what he always wanted to be, an attorney. He went to New York and worked with the  big wigs on some very prestigious cases. He was on the case of the Worldcom, which I'm pretty sure most of you have heard of. <p>He later went to Los Angeles and worked as an attorney and eventually came back to the Utah/Idaho area, (he was born and raised in Idaho), just a little dairy farm boy! <p>He now owns his own business (more than one I understand), has a wife and four children and is very successful in what he does. <p>He did not let his stuttering cause him to  settle for anything less than what he wanted to be. <p>What a wonderful and inspiring message he gave to our group tonight. <p>Thank you so much Marcus for your wonderful message and encouragement you gave to us tonight! We were blessed to have you and we also want to thank Gina Hamilton for making this happen. Thank you Gina! <p>I handed out a survey to find out what night and how often the group wants to have out meetings since we had such a hard time getting together this past meeting. <p>Thanks to all of came tonight; my wish is that we have everybody at every meeting. <p>We may not have a guest speaker every time but our time together is important also. <p>Until next time& & & & & & & & & & & & & & & & & & ..SPEAK UP! <p><b>Meeting Notes &#8211;July 28, 2010</b></p> <p>We had our SD July meeting last night and it was a very informative meeting.<span style="mso-spacerun: yes">&nbsp;&nbsp; </span>We had Kristine Tanner, the Director of the Spasmodic Dysphonia Research Team, as our speaker for the evening.</p> <p>Kristine has been working on the  interviews from many people that have SD.<span style="mso-spacerun: yes">&nbsp; </span>She gave us an update on the similarities there are<span style="mso-spacerun: yes">&nbsp; </span>between the people with SD.</p> <p>Genetic<span style="mso-spacerun: yes">&nbsp; </span>factors may predispose individuals to inheritance for having SD.<span style="mso-spacerun: yes">&nbsp; </span>Trauma, diseases, and social anxiety/phobias, also are linked to adult-onset dystonia.</p> <p>Viral infections, health problems and surgeries are reported more frequently<span style="mso-spacerun: yes">&nbsp; </span>in SD groups also.</p> <p>There is much more needed research for Spasmodic Dysphonia to truly understand how we get this disorder and possible findings of what can be done to live a life without the disorder being such an enormous factor in our lives.</p> <p>Funding is definitely needed to help the research be able to continue on.</p> <p>If you would ever like to make a donation, you can send it to The National Spasmodic Dysphonia Association at 300 Park Boulevard, Suite 350, Itasca, IL<span style="mso-spacerun: yes">&nbsp; </span>60143.</p> <p>We had a yard sale on June 5<sup>th</sup> at the Episcopal Church in Centerville to raise monies for the foundation.<span style="mso-spacerun: yes">&nbsp; </span>We ended up with approximately $250.00 for the funding of more research.</p> <p>If anybody ever has any ideas for funding for the foundation, please let me know.</p> <p>Kristine informed the group last night that there will be another Health Fair beginning September 18<sup>th</sup> and this year will be a week long event.<span style="mso-spacerun: yes">&nbsp; </span>We will have a booth for our voice disorders.<span style="mso-spacerun: yes">&nbsp; </span>I will be in touch with all of you regarding working the booth sometime during that week.<span style="mso-spacerun: yes">&nbsp; </span>Last year it was a great turnout and we gave a lot of information regarding SD.<span style="mso-spacerun: yes">&nbsp; </span>There was a lot of interest in the subject so we definitely want to have as much exposure as we can regarding SD.</p> <p>A couple more things, we will be losing one of our group members.<span style="mso-spacerun: yes">&nbsp; </span>Tonight was his last meeting with us.<span style="mso-spacerun: yes">&nbsp; </span>Jason will be moving to Pennsylvania for an exciting career opportunity and we are so happy for him but will miss him so much!<span style="mso-spacerun: yes">&nbsp; </span>Good luck Jason!!</p> <p>Tonight we welcomed a new member to our group, Rachel.<span style="mso-spacerun: yes">&nbsp; </span>We look forward to getting to know you better and having you with us as we continue on our way through our fun and rewarding group experiences!</p> <br> <p><b>Meeting Notes, May 19, 2010</b> <p>Our bi-monthly SD meeting was held last night at the University CAMT building. <p>We discussed our upcoming plans for our charity yard sale on June 5th at 8:30am and we will go until mid afternoon, (or when business warrants us to close up)! <p>Last night was a smaller group than normal and unfortunately there are only a few of us involved in this endeavor. I do appreciate the help and participation of the ones involved, thanks so much guys. <p>If anyone does have some things they would like to donate for the sale, you can contact me and I will try to get them from you and take them with me. <p>I would like to have our next meeting as a summer activity, perhaps a barbeque. I will be in touch with everyone about that for our July meeting. <p>There was a question asked last night in regards to donations to the NSDA foundation. <p>The foundation does accept personal checks and they are a non-profit 501c (3) organization, which means your donation is tax deductible. <p>If you would like to make a donation to the foundation you can do so by going to www.dysphonia.org and the address, phone number and fax number are all there! <p>Until next time& & & & & & & & & & & & & ..SPEAK UP!! <br><br> <p><b>MARCH 24, 2010</b> <p>We had our bi-monthly meeting tonight at the CAMT building at the Univeristy at 6:30pm with guest speaker, Dr. Marshall Smith. <p>We had a good meeting with a lot of interesting information regarding the findings of spasmodic dysphonia. <p>Dr. Smith commented on some interesting findings in the "Cerebral Cortex Journal" put out in March, 2010. <p>Some of the findings with SD and smiliar disorders are the following: <p>Mumps, Eye Spasms, Tremor, History, Meninigits , Cancer and Hereditary. <p>They still are not sure which part of the brain is affected by SD, they used to think it was the Basil Ganglia but not so sure now of that. <p>Thank you so much to Dr. Smith for attending our meeting and giving insight as to what is happening and answering all of our questions. You are a classy man, Dr. Smith and we thank you for all the work you do to help us!! <p>We had a great attendance, thank you everyone. We have a great group of people in our group and I feel we are becoming good friends and can count on each other. <p>Our next project will be a yard sale planned for Saturday, May 22, 2010. <p>We will have another meeting the Wednesday before that to firm everything up. <p>Until May, take care everybody& & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & <p>Get all your BIG AND LITTLE garage sales items ready!! Love to all of you!! <br><br> <p><b>January 20, 2010</b> <p>We had our quarterly SD meeting tonight at the CAMT building at 6:30pm. <p>We discussed our original idea of having a local convention here in Salt Lake in March of 2010. We decided that we didn't have enough interest at this time to go ahead with that plan. <p>We have decided that we will have a big yard sale in the month of May. Everybody in the group needs to be gathering items for this sale. We will need items such as furniture to be able to really bring in some money for the Foundation. <p>We also discussed how to reach more people to come to the meetings. We talked about trying to find people through the internet, and actually talking to the patients in the waiting room as well. We still have the fliers at the University and also at LDS hospital. We are on Criag's list, KSL and Facebook as well. <p>We also discussed having our meetings every other month instead of quarterly. We will start doing that beginning in March of 2010. We will still have the meetings the same place and same time, just more often to hopefully attract more people to come. <p>A couple of our members has had problems with their recent Botox treatments, as far as a gruff voice and also breathiness. I had an article on Botox stating that they were going to be putting a new  black box warning on the Botox because there have been reports of serious muscle weakness along with speech, swallowing, and vision impairments in children with cerebral palsy. Similar effects have been found in adults also. <p>We will have our next meeting in March, the 24th (the 4th Wed since the 17th is St Patricks Day). <br><br> <p><b>October 21, 2009</b> <p>We had our quarterly meeting tonight. <p>The main subject was what to do as a fundraiser for the National SD Foundation. <p>We ended up coming up with an idea for a local convention. We hope to be able to have it in March of 2010. <p>There were several great ideas talked about and each one of us will be working on something for the event to get it organized. <p>We hope to accomplish more awareness about this disorder, (by inviting friends and family and others who know nothing about it), and also to raise money for the foundation for research. <p>We had dessert and talked about what had been happening in our own lives the past couple of months. <p>We also discussed ways of reaching more people with SD to let them know of the local support group meetings by making sure there are plenty of materials available in the doctors offices. <p>We have our next meeting planned for January 15th at 6:30. <p>We will be in touch by e-mail as to how we are doing with our planning for the convention. <p>Until then& & & & thanks guys!! <br><br> <p><b>July 15, 2009</b> <p>We had a good meeting tonight with just about all the members present. <p>We met Kristine Tanner, who has taken over the job that originally was done by Cara Sauder. <p>Kristine is a very nice woman and is currently working on putting together all the information from the interviews that were done over the past year or so. She is very dedicated and also anxious to help us as a group. <p>In September (12th, from 9:30-4:30), there is a Health Fair coming up at the University and there will be a booth for voice disorders. <p>Our members are going to be there handing out information and answering any questions about SD. Hopefully this will get more people with SD knowing about our support group and give them some well needed information they need. <p>We also discussed other ways of advertising our group to discover new members since the newspaper will not list our meeting in the paper anymore. <p>I got some good input from several members about putting up an announcement on KSL, Craig's List and even Facebook. Great ideas which I plan to input asap. <p>I would like to mention one member in particular who we haven't been able to see for a while because of his job schedule. Jason, it was great to have you back, we have really missed you and your input at these meetings and forgive me for forgetting your BIRTHDAY!! I'll make it up to you! <p>Next meeting planned for OCTBOER 21, 2009, see you there! <p>Until then& & & Thank you everyone for supporting each other! <br><br> <p><b>March 11, 2009</b> <p>We had our quarterly meeting at the University campus tonight at 6:00. <p>We had quite a good turn out with about 9 people attending. <p>We welcome new member, Susan Ansell to our group, who I think will be a great asset to our SD family. <p>We talked about various topics and kicked around some ideas for public awareness for SD. <p>Susan mentioned her husband has worked at KSL TV station for a number of years and she would discuss with him about maybe helping us get a 'human relation' story mentioned at one point on the station. <p>Our main goal right now is to raise public awareness as to what SD is and what we know about it as of now. <p>There is a lot of research being done on SD but right now, we ourselves, still don't quite understand a lot about it. <p>We also would like to think of a fund raising project to do in the upcoming months to raise some money for the foundation to be able to continue the research that is going on and there is quite a few different research subjects going on about this voice disorder. <p>We decided as a group to hold our meetings every other month, instead of quarterly. We feel too much time goes by before we get together and discuss what has gone on in our lives and also will be keeping a short journal of things that have happened to us during the time we have been away from each other. <p>We will meet every 3rd week of every other month at 6:00 at the same place. <p>Until next time...Speak Up! <br><br> <p><b>November, 2008</b> <p>We had our quarterly SD meeting tonight, had great food and conversation. <p>There were a few who did not show; hopefully they will be there for the next meeting. <p>We had Cara Sauder, speech therapist, that attended our meeting. She is a great therapist and had many good ideas for us to develop different ways of speaking to help us feel better about how we sound when we speak. <p>We had 2 new members tonight and we welcome them. They will be a wonderful addition to our group and hopefully they came away feeling hopeful and more secure that they have a place to go and people who understand how they feel and what they are going through day to day. <p>We also had some of the spouses attend the meeting, which was great. I think they came away with a better understanding of what this disorder is about and how we feel in regards to certain situations in our daily lives. <p>We spoke a bit about trying to come up with ideas to help raise awareness about SD, as well as make money at the same time for research. <br><br> <p><b>August 13, 2008</b> <p>We had our quarterly meeting tonight at the University CAMT building at 6:00. <p>I have had such a busy month (already), that I did not send out the e-mail regarding the meeting in a timely manner, therefore, there were several of our group not in attendance. <p>I apologize for that and will try to not drop the ball like that again! <p>We had a good meeting though with a lot of interesting interaction and discussion with the people that did attend. <p>We discussed the different ways that research is being done for SD, (information I had received from a board member of the National SD organization). <p>Unfortunately, there is not much money being made available to the foundation for all the research that needs to be done. <p>We discussed ideas on how to raise money and also raise awareness to the community about SD. <p>We talked about a radio show or TV show, if we could find a way to possibly get the subject on the air or in the newspaper again, that would be one good way to raise awareness. <p>We had a good discussion about our own personal interactions with people who do not understand our speaking disorder. <p>I, personally, enjoy getting together with the group and I come away from it feeling inspired and excited about the things we discuss and ways to help others and make things better for ourselves as well. <p>See you in November…<br><br>…<p><b>May 14, 2008</b><br /> <br /> We had our first SD meeting last night at the University CAMT building. <br /><br /> As you all may know, I actually tried to start a support group up a few years ago but it never worked out. <br /><br /> I am very excited at the prospect of starting a new one and growing in to a large community of people with SD that can not only enjoy each other's company but can raise awareness within our community about what SD is. <br /><br /> At the meeting last night, we had a very good turnout. I was excited and happy with everybody showing up and participating in suggestions and ideas. <br /><br /> We had good conversation, got to learn about each other and even had some good refreshments. <br /><br /> I'm excited about this group. The people we have are great, very willing to share and be involved. <br /><br /> I want all of you to know your spouses are welcome at these meetings, as well as any friends you may have that would be interested. <br /><br /> I will be having speakers in the upcoming meetings and as I receive any new information from the foundation, I will surely pass it on. <br /><br /> Looking forward to our next meeting ………………………………………………. <br /><br /> <br /><br /> </td> </tr> </table> </td> <td width="40">&nbsp;</td> <td width="100%">&nbsp;</td> </tr> <tr bgcolor="#ffffff"> <td colspan="6"><img src="mm_spacer.gif" alt="" width="1" height="1" border="0" /></td> </tr> <tr> <td width="15">&nbsp;</td> <td width="215">&nbsp;</td> <td width="50">&nbsp;</td> <td width="440">&nbsp;</td> <td width="40">&nbsp;</td> <td width="100%">&nbsp;</td> </tr> </table> </body> </html>