Thursday, October 23, 2008

Support? From THIS Support Group?

Hi All!

As most of you are aware, I have Spasmodic Dysphonia (SD), a neurological vocal disorder which is incurable and difficult to treat. The particular type of SD that I have is called ABductor SD and the "normal" type, which most people with SD have, is ADductor SD.

I am very lucky in the fact that, with extensive speech therapy with a speech therapist who specializes in vocal disorders such as SD, I have recovered about 95% of my normal voice. This is something that very, very, very few SD sufferers ever do. It is a real life miracle.

Anyway, I told you all that so that I could tell you this.

In the Dallas-Fort Worth Metroplex there is a support group for people with dysphonia (SD) and dystonia (a neurological disorder related to SD which affects different muscles in the body - usually the neck and shoulder muscles). This support group has been running for many years and is led by two very dedicated women, P and L. The meetings are held at a very nice venue but in a room which is really designed for lecture type activities. The tables are attached to the floor and the chairs are attached to the tables. The only way that you can comfortably sit is facing front.

The meetings, while very informative about issues relating to dystonia and dysphonia, don't promote a lot of interaction between the attendees as the format is normally a speaker presenting information to the entire group. Now, don't get me wrong, I think the meetings are good for what they do but, I also feel the need for more interaction with people who are experiencing the same things I am with SD.

Well, at a meeting of the support group several months ago (I think it was sometime in the Spring), I voiced my desire to have more interaction with the people at the group as well as my observation that both of the meetings I had attended had focused on issues centering on Dystonia and really having no relevance to SD. P and L told me that they had focused on SD in prior meetings and I was just at the ones focusing on Dystonia. They would have future topics relating to SD. I was satisfied with that and planned to keep attending the meetings. They also seemed to understand my desire to talk more to the people at the meeting.

Okay, so my friend Lori, who also has ABSD like me and I were talking and decided that it might be a good idea to have a supplementary support group meeting for just people with SD so that we could talk and really deal with topics of interest to only SD people. These meetings would only supplement the "big" meeting. The "big" meeting would provide all of the information - recent research, etc. - and ours would center on just talking about problems, etc.

Sounds good, right? That is what we thought. We had our first meeting and 16 people with SD showed up (only about 3 or 4 ever show up at the "big" meeting). We were thrilled! The next "big" meeting was announced and both Lori and I planned to attend. Then it was cancelled due to weather (I think it was hurricane Ike or someone who ripped apart Galveston, Texas). Fine. We waiting to find out when the meeting was rescheduled.

Oh - side note, a woman with dystonia and her husband attempted to have a "supplementary" meeting a while back which is what gave us the idea for our meetings. Their meeting never really happened due to late notice but they still tried to arrange one. The husband is the S you will read about in a little bit.

We got emails telling us the meeting was rescheduled for Nov. 8. Then we got the same exact email with the word "cancelled" in the topic line. A bit confusing. Adding to the confusion is the fact that the National Spasmodic Dysphonia Association sent an email telling us the the South Central Region Symposium was scheduled for Nov. 8th. This is something that both Lori and I were waiting to attend as it is a time to meet other people from the area with SD and to learn more about what is happening in research, etc. (by the way, there is a national symposium each year as well).

Did you happen to notice a conflict with the dates? Hmmmm - we did too! Lori emailed L and asked about when the "big" meeting was again and asked if she knew that it conflicted with the symposium.

Oh Boy! Was that ever the wrong thing to ask! That innocent email (I read it - it wasn't snotty or anything) set off a flurry of really (and I mean REALLY) nasty emails from P and L and even from S - the husband of a dystonia patient who attends the meetings (I have no clue why he got involved!)! Let me tell you, these emails - all sent to Lori - were horrible! They kept going on about how Lori was negative about the "big" meetings and was harassing L and how she was selfish, etc.

I was flabbergasted! I mean . . . really! All of this from the leaders of a support group!

I didn't respond to any emails even though I really wanted to. I thought it was better to just stay out of it. Then I got this email

Lori and Trish, I just want you to know that I've told L to remove your names from our Roster. You won't be receiving any other fliers to confuse you. Since you have your own Support Group I feel you need to stay away from ours. You both bring a negative aura with you and that's the last thing Dystonia Patients need. Trish said she didn't feel supported by our group so I don't want to waste your time or ours. P

How supportive is that? Lori and I have basically been banned from the support group meetings!

How supportive is that?


Voice Update: Still going strong. I haven't been doing my massage lately. I need to get back on the ball with that. Having a cat in a cone has sort of taken all my attention. Hopefully when Hubby gets back from his trip he will take up some of those duties and leave me a little more time and energy for massage and exercises!


Just Me said...

Hi. I read your post on Coffee Bean's blog today.

God does help the Lisas of this world. He gave her friends -- proactive, not passive -- and family; He gave her work and a home and a purpose for her life, and He had previously led her to professionals for help when she couldn't help herself.

For whatever reasons, Lisa did not see these gifts or trust either herself or God, and she made a tragic, devastating choice to end her life rather than turn to the ones God sent to answer her prayers.

I admit that I can't fathom (nor would I want to) a pain so deep and constant that I'd want to die, so I won't dare to judge Lisa's decision. I don't feel, however, that God abandoned her. She just couldn't see His presence throughout her life.

noble pig said...

OMG you horrible girls! LOL!

Wow, they obviously felt threatened by you both or they wouldn't have done it!

How ridiculous!

Anonymous said...

It sounds like you may be better off without those folks. Some people really like being the authority more than they like supporting others!