Important lessions & things a Student Speech Therapist might be taught by us SD'

Long time since I've been posting on here and a lot of new folks are here now. Wow, that's great! I'd like to Welcome each and everyone of you to the NSDA Spasmodic Dysphonia Bullentin Board. It's a wonderful place to be and very informative and helpful to all of us. Thank's to the NSDA and all who are involved in keeping this bb alive.

Well some of you probably don't know me or what I've been through in the last 18 years of my life. However, I invite each of you who are interested to do a search on this bb using my name, "Jan Joiner", and it should pull up some of the post I've made on this board. Maybe this will help some of you who don't know me to get to know me better. Any SD person, dystonia, etc. are friends of mine whom I think highly of all they are and all they have to deal with as a human being. May God Bless each of you.

Now getting to my point of the subject at hand. As most of you know I had SLAD'R Surgery by Dr. Berke and Dr. Blumin in June of 2001. After 3 months I started regaining my voice and getting my life back. After the surgery when I started to get my voice back, I went to a Speech Pathologist doctor to have a video strobe done on my vocal cords to learn what progress I'd made and if things where working right. So that I could send Dr's Berke and Blumin a copy of my strobe and allow them to judge by progress as well. Well, I went and had the strobe and the doctor was amazed at the results, but suggested that I might bennifit from having a few sessions of speech therapy to help improve my speeching abilities. Since my insurance doesn't pay for speech therapy and this doctor was involved in a local univerisity teaching speech to college students and supervising them. He suggested I come to the college and go through their program for a few months at a cost of only $6.00 per session. So, I thought, hey what have I got to lose, it couldn't hurt even if it didn't help.

So now, my question to you all seeing as how experienced the majority of us is with dealing with this life long terrible process. I thought it might be interesting if I could get something good started here to help us and the student's and maybe even the public. I even thought as far as writing something by working with the student's, teacher's and of course those of us who have SD and have dealt with speech therapist,etc. Maybe even talk to the university about getting it put in there local college newspaper, etc. So, What do you all think about this?

I know myself having had bad experiences with speech therapist and pathologist. I have a few things I could bring to their attention and maybe help some future speech patient's with what to expect from a speech specialist and vi-versea. Here are a few thoughts and recommendations of mine:

*Learn what it feels like mentally and physically to have a speech disorder.

*Don't get the big head and try to be a doctor of the throat, ie, take over the job of the Otolarngologist Specialist.

*BE Patient, after all that is why you choose this career field is to help people, not scold them, etc. And of course don't forget the amount of money you will be earning, but that is beside the whole purpose. (If you know what I mean)!

*Be caring, willing to suggest second opinions and try not to make a fortune off one patient, become aware if you are not getting the results you expected after a period of time, don't be unrealistist, be willing to say hey this is not working out like we expected so let's try something else.

These are just my opinions as related to what I have personally dealt with through my years of having SD and seeing doctor's, speech doctor's, etc.

So tell me what you think about all this and post a reply to me. No offense will be taken, this is just my way of trying to help others learn from experience, etc.

Thanks and Regards to All.

Good for you and I'm glad to see you back. Nice to hear things are going so well also.

Your idea is excellent. I'm in a hurry now so will re-read your post more thoroughly later and get back to you on private e-mail. I started a project somewhat similar to this last month that I would like to discuss with you (mostly the differences in the universities, thereby requiring a different approach). What I was proposing was more like making presentations to the speech therapy classes. My problem (around here), is that I don't currently have an *in* at the universities. Looks like you do, and that is great! I hope you can use it to our collective advantage.

You may be interested to know that some members of the Northern Illinois SD support group have worked with classes at NIU in a similar manner. This seems to have worked well and was helped by the fact that the group leader is employed by the university. I hope she sees this post and will write to you but I don't think she gets on the BB too often so I'll let her know about your post.

Good work and I'll be talking to you soon,

--Lynne (AD-SD; Northern California)

It's good to hear from you and thanks for the comments. I think I have a good opportunity here that has opened up to me. However, the actual doctor/Pathologist who is doing the training does not work for the university, ie he works with a Birmingham ENT Specialist. I am not sure how he got involved with the University of Montevallo, but I am sure glad he did.

I went for my appointment today and I spoke to him and the student who is working with he and I. I told him what I planned to do and he said that was wonderful and it would be good for the both of us. He also ask me if I'd be interested in speaking to a class in the fall for 15 minutes or so and express my thoughts and feelings. I was quiet shocked, cause I've never spoken before a large group of people like that other than church, etc. I am a bit nervous, but somewhat excited that I may finally be able to add to society and help others cause in the pass I was unable to speak out.

Look forward to hearing from you.

This is why this BB is so great! I'm going to be asking for your advice as to how to work with medical universities in my area (University of California in SF and Davis...both MAJOR medical centers) in order to educate the young, upcoming speech students. There are reasons why I haven't been able to pull this off as yet.

Thank you both. I went through speech therapy for three years (before I knew what I had) and it didn't help me at all since my SD-case was extremely severe (and my case was classic but she didn't recognize it!!!) but I truly believe that high-quality speech therapy helps us all, in dealing with our voices and our breathing, AND I am committed to educating all new practitioners. How else will they be able to understand SD ~ unless we meet with them and talk to them and educate them as to what we deal with everyday?

They will learn more from us than they will ever learn in school!

Thanks you two!!! Let's get something going here. Let's get everyone educating their local university students. I've been doing very aggressive patient-support in California for 4 years; but, it would be awesome if we could reach out to the new practitioners, so that new SD-patients don't have to meet the brick-wall in the future.

You are both inspiring me!

Let's do it and let's share it on this Bulletin Board.

Good to hear of this. I'll include you on my private e-mail notes to Jan and Sue. I envy all of you for being in this receptive situation. As I said, there are reasons why I have not been able to make it work around here but I won't discuss it on the BB. I hope to get more information from all of you to fulfill this plan I have.

See you in Arizona! I leave two weeks from today....mega-road-trip!