Thursday, July 17, 2008

The Dance Continues

Hi All!

If you have read my blog for any length of time you are hopefully aware of the fact that I have Spasmodic Dysphonia - a neurological disorder which makes speaking very difficult for me. If you have listened to any of my recent podcasts you are also aware of the fact that currently my voice is sounding pretty "normal."

I thank God daily that my voice has progressed to the point where most people wouldn't notice that I have SD. I also thank my therapist and the TONS of work we have done together to get me to this point.

However, no matter how good my voice sounds at any given time or how often people hear me and think I am "normal," I still have SD. Sometimes I conveniently "forget" about having SD - usually when I am trying to avoid my speech exercises! But - eventually, something comes up to remind me that yes, SD is incurable and I will be living with it for the rest of my life.

This past week I have been reminded about my SD by the mere fact that my voice hasn't been as good as it was a few weeks ago. This is because of some stress in my life and some illness (migraines are tough on my voice). I have gotten back into my exercises religiously - the timer is counting down its thirty minute interval until the next session of exercises as I type this. My voice has improved. Life goes on.

I didn't realize how much my friends have adjusted to my SD until yesterday. I have a wonderful friend, "D," who was a lifesaver for me during my "silent months" she would take the time to listen to me on the phone when it was virtually impossible to hear me unless she was in a quiet room and listened intently. She made a point of emailing me to see how I was doing. She even made a point of getting together with me for lunch or dinner about once a month or so. D's daughter, "C," is also very good with the whole SD thing despite the fact that she is only in the 8th grade.

Anyway, D and C have always been there for me. C knew it was me on the phone when I called and she didn't really hear anyone. "Hi, Mrs. K!" she would say cheerfully. "I'll get my mom." They understood that when we went out to eat it was important for me to pick a quieter restaurant. They knew that my Spokeman microphone would be the not-so-silent fourth in most of our meals. C even offered to decorate my Spokeman with rhinestones and glitter at one point (I politely declined.). They are great.

I had dinner with D and C last night. Now, it has been a while since I have had to take my Spokeman with me in order to be heard but we still choose quieter restaurants and C has even been known to politely ask that the music be turned down so that I could be heard. It has gotten to the point that this is natural and none of us really think about it anymore.

Last night we ate at a restaurant where we don't normally eat, Macaroni Grill. It was a nice meal and we had a lot of fun talking and joking around. After the meal we headed to Half Price Books to troll the aisles for something interesting.

It wasn't until I talked to Hubby that evening that I realized the accommodations we had made for my SD. I told him that we had gone out to eat - he wasn't surprised. But when I told him where we had eaten, there was a pause in the conversation. They he said, "Isn't that too noisy for you?"

I realized that yes, it was a noisy place to eat. I also realized that without discussing it we had decided to eat rather early because there wouldn't be a big crowd in the restaurant and therefore the place wouldn't be too noisy. I also realized that when the host showed us to the table, all three of us looked around to see if we were being seated by anyone or anything that would make talking difficult for me.

SD has become such a part of my life that these accommodations are now second nature for me as well as my friends. They are not even discussed because they are "normal."

How wonderful to have such great friends!

Trisha
Voice Update: I have been faithful to my exercise routine and have noticed that my voice is responding well. I am still missing a few unvoiced consonants here and there but they are becoming fewer and farther between. I have been doing inhale "e's," "ee's," and "eee's" along with massage every thirty minutes. I have also been making an effort to do some reading aloud and some inhale/exhale matching pitches when I get a chance. I am doing some research on the massage for an upcoming podcast and blog entry. Sorry it is taking me so long but I don't want to give you bad information!

6 comments:

Coffee Bean said...

That is cool. I've been thinking about you a lot and the fact that you've had so much success through therapy and exercises... My speech pathologist and doctor both said that that was a waste of time for me...

I often wonder if I am doing something wrong.

I don't know... during my trip to Seattle I did not have to try so hard to speak... yes, I was on vacation but I don't think that I was more relaxed than at home. I'm a stay at home mom and my life is pretty cushy in a lot of respects. We were continually in loud group situations... which case me stress... The SD was there. I didn't sound different... but it wasn't hard to speak. I just spoke. It makes me wonder if the altitude has an affect and that is the reason it is hard for me to breathe when I am speaking.

I know what you mean about forgetting about the SD. The times the botox worked for me I put it out of my mind. It was awesome.

Lauren said...

hey Trisha, I am so glad to here that you are doing well. I wanted to let you know that I think I might have gotten one of your boxes. It is sometimes hard to tell because we get random ones from donators whose names I don't know. But if you let me know what you sent then I can confirm and show you some pictures of people enjoying your things. Thank you so much, we really appreciate it. Talk to you soon.
-Lauren

Karen Deborah said...

awhh no matter what the trial is in our lives good friends make all the difference.

Lauren said...

Hey I wanted to let you know that we did receive both of them! They were great ones. The people on our ward attacked me when I opened the box, and there was much use made of every item. And to answer your questions nothing spilled onto anything and the tootsie rolls made it perfectly. Thank you so much I will be blogging about it when I get a chance.

dlyn said...

Hey Trisha - I see Lauren has stopped in to tell you that she thinks your packages got there. I just wanted to come and give you a little extra thanks for your kindness. Your generosity means a lot to me and to Lauren and the other soldiers there with her. Blessings! :)

Ecolo said...

Can't wait for your upcoming podcasts! Thank you so much for sharing your SD journey. You inspire me so much. As soon as I am back home from taking care of my Dad, I am going to jump in with both feet to see if I can have success with improving my SD!

You are such a great friend!