Re: suicide
Harriet,We definitely understand. You've now told alot of "someones." Thank God for this Bulletin Board and for all the wonderful souls who contribute to it. Also, you bring up a good point because "a little background" might be in order, regarding that headliner message. Once upon a time (in "BB days of old"), there was only one Bulletin Board (combination of all dystonias) and it did not use the software it uses now (which identifies our computers) and it did not have the Moderator structure and guidelines it has now and it did not have the great webmaster it has now and (unfortunately) there were alot of *things* appearing on the Bulletin Board which were not very sustaining and supportive for participants. No need to go into grim detail; but, suffice it to say that I started posting during some very dark days of that former Bulletin Board and there were *nasties* going back and forth, under the guise of anonymity (posters changing their handles every day and no way to tell who was who), and two weeks after I began to post (having nothing to do with me...just related to "chronology"), we all woke up one morning to get on the Bulletin Board and find an anonymous suicide note. The poster indicated that by the time we would have all read the message, he/she would be gone. To my knowledge, we never knew who it came from but *mass Bulletin-Board panic* set in. We all tried so hard to help each other, yet we didn't know who was crying out for help. Many of us ended up talking to the Moderator (different Moderator from current SD-BB Moderators) on the phone that day because she was touching bases with everyone to see who might have done themselves in. It was a very sad situation and virtually stopped us lay-people posters (knowing nothing about crisis-intervention) in our tracks. Since then, the people who voluntarily moderate and operate this Bulletin Board (and the Dystonia BB) have done an excellent job, on behalf of all of us, to set up guidelines so that people in true need can quickly find professional help and those of us lay-people who are here to seek friendship, information and support are not called upon to jump in where we are not trained or qualified to be. Believe me, it is a totally different and healthier Bulletin Board currently, because of these guidelines. Hope that helps for background of that message; and, also (as you know), as challenging as our disorder is to handle, the fact that we are *here* means we (sort of) know what we have and we have found a community which listens and understands. Not to be corny, but *oh well* I'll be corny: just in getting to this site, we are blessed and have won a large part of the battle. Truly. --Lynne (AD/SD; Northern California)
--modified by Lynne Martinez at Wed, May 08, 2002, 10:14:50 --modified by Moderator-DB at Wed, May 08, 2002, 15:33:44 --modified by Moderator-DB at Wed, May 08, 2002, 15:35:26
Re: suicide
Yeah, Harriet, that message always bothers me, too. I can't help wondering, each time I read it, "Am I feeling depressed?" And then even if I'm having a good day, I sink just a bit. As if I'm supposed to be depressed because I have SD.
We all struggle, God knows, and I think there's often a very, very small line between maintaining a balance and falling off the edge (and oh, the many times I've tripped). Thankfully there's help out there for any who might need it.
And I know too well about waiting for the Botox to work. I had a shot a month ago and had no voice for three weeks, a breathy voice for another three weeks and am just starting to be able to speak more clearly. I was so frustrated, not being able to speak, that I would sneak down to the gym at work and lift weights each times things got stressful. Didn't help my voice much but hey, I'm getting some major muscles in my arms and shoulders.
Cheers,
--modified by Moderator-DB at Wed, May 08, 2002, 15:34:10 --modified by Moderator-DB at Wed, May 08, 2002, 15:34:30
Re: suicide
Cinthia, I'm interested that you mentioned exercise as a coping strategy; I wonder how many others have turned to that and found it helpful in a variety of ways. I've started exercising more purposefully just to build up my strength, since for me the exhaustion of talking is more pervasively disabling that having a hard time making myself heard. And exercise is supposed to be an extremely important part of effective treatment for/prevention of depression for anyone, I believe.
Thanks for mentioning that the exercise is helping you.
Linda
AB/SD, Annapolis MD
--modified by Moderator-DB at Wed, May 08, 2002, 15:35:01
Re: suicide
Cinthia,
I have been working out at the fitness center, here at work on a regular basis for about the last 8 months. I find it helps me cope better, not only with the voice thing, but layoffs here, and the general low moral. I also know it is better for my over all health. I do some treadmill and then some upper body exercises on the equipment we have. I think I have in general, a better attitude about things. It is one thing I actually have control of...Larry MTD/SCAL
--modified by Moderator-DB at Wed, May 08, 2002, 15:35:54
Re: Coping with SD for such a long time
Larry, Linda:
Yeah, I do feel that exercise is important and maybe, as you said Larry, it has to do with control: it's one way I can control my body. But it's more than that. It's the feeling of being carefree. I just bought a new pair of rollerblades, and oh, they are so smooooth! I've been zooming around the neighborhood all evening and really, I almost felt as if I were flying. And what I was thinking was, "I am completely, totally happy at this moment."
And maybe I wouldn't appreciate such things as much if I didn't have SD. Maybe I would be like most of the other people out on the trails, trying to cram a bit of exercise in a hectic day and hurrying, hurrying, hurrying through everything.
Maybe in a bizarre, almost awful but also wonderful sense, we are blessed.
Cheers,
Cinthia, AD, Alaska (hey, someone throw a little sunshine this way, okay?)
Re: Coping with SD for such a long time
Cinthia, that was a great vignette to share. I have a great picture in my minds' eye of a woman flying along on her rollerblades with such a glow in her face and such a light in her eyes -- what a blessing you have found.
I know that, as an educator, I now have both a dramatically different level of insight into what it is like to have a disabling condition, and a conviction that I have a moral obligation to get this across to my students (teacher candidates) and other educators with whom I work. To know how very many people are experiencing different sorts of problems for which they may have no diagnosis for years leads me to think I have to take a vastly more charitable view toward any "difficult" person I may encounter -- because who knows what is going on under the surface? All of which leads me to affirm that yes, while I would dearly love to have a non-breathy voice again (not normal, just functional), I can see that I am being blessed just like this.
But my heart still aches for all who are in more difficult circumstances than I am in -- and who knows how I would respond if I were in their situation?
Keep rolling along -- I love my mental image!
Linda
AB/SD, Annapolis MD
Re: Coping with SD for such a long time
wow, I'm a 45 year old male, who has been dealing with this voice issue for over three years. I went from doctor to doctor, only to be disappointed time after time. I thought I was stuck with this problem for the rest of my life. I spent many a night, on the internet combing web sites pertaining to voice problems, hoarseness, etc. I never came across spasmodic dysphonia, ANYWHERE. Then about a month ago, while getting a hair cut, this woman who overheard my voice, or lack thereof, mentioned that she just met a woman last fall who spoke (just like me). She went on to say after an exhaustive search, and being aggressive, she finally met a doctor who knew about botox, and spasmodic dysphonia.I was put in touch with here, she set me up with a local doctor, I got a referral and proceeded to Mass. General hospital. I got my first botox injection last Tuesday, May 21st. My speech on that particular day, was pretty good, go figure. Anyway, by Friday, I have lost my voice completely. I'm very breathy alright, I can barely whisper. I found myself getting very anxious, yesterday, and today Sunday, May, 26th. I feel pretty healthy, I think its just getting to me, the dry throat, little to no voice, and the choking, while drinking anything quickly. I'm just hoping that my voice will indeed come back soon, and be half decent. That would be a blessing for me, and my family. I want to thank everyone involved with this on-line posting service. I read alot of posts today, and it made me feel alot less anxious. GOD BLESS you all, and keep up the good work. THX again, Chris Moore
Re: Coping with SD for such a long time
Hi ChrisI'm pleased you've found us - welcome to the NSDA BB!! It's always interesting hear new people tell the story of how they got diagnosed. Good luck with your first Botox shot and let us know how you get on. Best wishes David Barton (AD/SD, Auckland, NZ)
Re: Coping with SD for such a long time
This is the first time I've been to this sight. My voice gradually started getting worse and then about a year and a half ago I saw a couple of different doctors that didn't know what was wrong and it was so depressing. When I moved to Charlotte I decided to go to another doctor as it was getting worse. Thank God my primary care doctor recognized my symptoms immediately and got me on the right road. I had my first botox shot in Jan and had no results. I think now that the doctor didn't get the shot in the right place. Well I had another shot a week ago and the spasming is gone but my voice is very breathy and larygynitus(sp) like especially at the end of the day. I hear that should be going away soon. Is that right. If so I'm a happy camper. Would love to hear some success stores with botox. Arlene
Re: Coping with SD for such a long time
I think I am not used to this web yet, I just deleted my message and I will never have the spirit of that fine writing back again. Seriously, I have had great luck in the five years I have received injections. The agony of recovery is paled by the benefits of eventual voice. I have found that people I do not want to talk to - solicitors, charitable work directors, and in-laws will leave me alone once I start gasping and sounding like a telephone sex pervert, which of course I am not.Dave
Re: Coping with SD for such a long time
you know I think I have the same problem sometimes. I posted a reply to some one and ended up losing it all. I thought it was my best writing too. At least it was better than my speaking has been. I just had my 2nd botox shot and my voice is really breathy and laryngitus(sp)I'm going to have to learn how to spell that one now. But I guess breathier is better. At least I'm not having any voice spasms now.
Re: Coping with SD for such a long time
Arlene,
When I am of good voice, I find myself walking up to and starting conversations with trees. It's like a Xmas toy. Look, it is what it is -we could be a whole lot worse off! It's just that our communication ability is such an extension and facet of our personality and being. But consider this, there are a lot of people with normal voices who should just become and stay quiet - at least 95% of the time.Dave
Re: Coping with SD for such a long time
Dave, after reading your comment here, I had to pass on something I saw on a Dove candy (they have those little fortune-cookie-type sayings inside the wrappers of the individual chocolates) -- I kept this one because I thought maybe this was the message I have to learn through this disorder: Wisdom is having something to say, and not saying it. As a teacher (when I still had my teacher voice) I would tell my kids that there's a reason we were created with twice as many ears as mouths. Same message, I guess. I believe the disorder is making me a better listener, and the world could do with a lot more of those.
Thanks for all the cheering posts!
Linda
AB, Annapolis MD
Re: Coping with SD for such a long time
Linda,
That Dove candy has more to say than anyone - besides you and the fellow SD-ettes - about life and absorbing the communication of others. God help me, I LOVE TO TALK! You can tell because I post so much on this board. I start a new job in 2 weeks with the college I have taught for and incidently, they could give a rip about my voice. I am sure once I start the position, my messages will become less - ha! I feel life is perceptions and contrast. If we perceive things as barriers, then they are. Contrast is shown in the way we compare ourselves to others. This is when the poor me and look at all those normal people talking so naturally - I hate them. Why does bad tings happen to such good people like me? sob, sob, whine whine! Listen, scratch a little deeper into anyone's life and you will see things that make SD look like a blessing. A friend of mine siad that a successful entrepreneur is one who seeks to and does make everyone around them successful and to also, bring out the best in them. My mission - and I really can thank SD for this to a great extent - is to look outside of myself and try to "bring up" others. If we do this, our voices in comparison to that noble quest will be like comparing a pea shooter to a neutron bomb. Dave
Re: Coping with SD for such a long time
Hi Dave, I am glad that life is treating you so well. Sadly I am not having the same experience. I was treated as an outcast at my last job (24 months) and received verbal abuse, threats and an anonymous letter at which point I left. I have had no income for 8 months and was refused benefit as I had worked part time since the onset of the SD.
I have failed to get work since even cleaning work and find that most positions require a telephone call and I never hear again.
If I send my CV I am sure people wonder why I am looking for cleaning work when I have taught Art in schools.
I try to be positive but do not have the luck that you seem to have despite my determination.
I could not do a job that involves a lot of talking because of the distress that speaking causes my body to go through. I do not actually care what I sound like.Krissie AD/SD and complications...lots
--modified by krissie at Thu, Jun 06, 2002, 15:43:18
Re: Coping with SD for such a long time
Krissie,
Again, as I had posted in another thread, I think your answer is there and that is treatment with botox. It works and changes lives. Please seek the care you need, because you have had a terribly rough time.Dave
Re: Coping with SD for such a long time
I just had to add that I know exactly what you mean about exercise helping to improve overall morale and well being. I was working out at a gym for the past 10 months....3 days per week, about 2 hours total work out per day, 45 minutes on the treadmill per workout. It took my mind off of my problems ( we've suffered through job layoffs and LOTS of stress the past 2 years), off the SD and just made me feel better in general, not to mention the great weight loss and muscle toning that I got out of it! I recently went back to work after being a stay at home mom since 1987 and although I had to give up the gym for now, working has also made me feel 100% better, I'm still losing some weight and have cut my nasty cigarette habit down dramatically! Also, amazingly, since I don't think about other things while working, my SD symptoms have reverted back to mild as they used to be long ago. I talk to customers all day and have very little problems with my voice situation.
I have had alot of problems in getting jobs since my SD had gone to more of a moderate/severe level but I got this one by immediately telling my new prospective boss all about it right up front. He was very understanding and more than willing to work with me if I encountered problems. I think the reduction in stress has helped my SD symptoms to lessen. I realize that many people have a much more severe case than mine and may not be so fortunate but we must all hang in there and deal with it one day at a time, there is always hope.
Re: suicide
Harriet, it's interesting that you posted on this topic. Our DC SD support group met on Monday and one of the topics we wound up addressing is the need to recognize symptoms of depression and anxiety related to coping with SD (or even to being a spouse/partner of someone with SD), and know where to go for help. My husband and I talked on the way home about how likely it is that folks with SD will cycle in and out of the stages of grief, not necessarily just once but at different times and with different impacts at different points in the lifespan. Since this is a for-the-rest-of-my-life condition (until the research finds the holy grail that we all pray for), dealing with my AB/SD will always be part of dealing with life.As Lynne said in the following posting, I feel this BB has been a tremendous blessing in my own life. I can't feel isolated, or without someone to turn to when I hit the wall. It has been of the greatest comfort to learn about the great variety of experiences, so I don't get stuck in "why is my own treatment going like this instead of the way it's supposed to go?" -- because there are about as many variations as there are SD patients. I feel that I'm already learning an awful lot of "life" lessons through SD (a big one: perhaps there is a reason we were made with twice as many ears as mouths)...not that I wanted to learn them this way, but I can still grow through it. My deepest, heartfelt thanks to all who share their experiences. I learn from and am fed every day by this community.
Blessings,
Linda Adamson
AB/SD, Annapolis, MD --modified by Moderator-DB at Wed, May 08, 2002, 15:36:21
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