- Laryngeal Dystonia
- Interviews
Lucy's interview
How did all start?
1993 from stress and verbal abuse from my family. Working long hours in my own diner. I also have visual dystonia and body spasm
Do you already have a diagnosis? How long did it take you to get it?
Yes I have diagnosis it took a week after I got. I was sitting in the doctors office when it first happened. They rush me to the hospital thinking I was having a stroke.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I see a neurologist and primary care doctor regularly. They are now doing Botox injections for my mirages and take colozpam and nertuon everyday
What has been the most useful thing for you so far?
Really nothing I seem to get worst almost every day. I have lost my life as it was and hate it so much. I was a very active person and because of the dystonia and mirages I can’t function like use to I can’t even drive now
What have been your biggest difficulties?
Seeing out off left eye speech balance walking like I’m drunk body spasms
How has your social and family environment reacted? Have your social or family relationships changed?
My mom thinks I’m making it up and won’t even talk to now. My 3 sons are understanding. My husband after 30 years divorce me. I have moved from NY to Georgia about 5 years ago. I have a new boyfriend now and he and his family are awesome to me I don’t know what I would do without them in my life now.
What things have you stopped doing?
Baking cooking sewing driving bring with my family just everyday life as it was
What do you think about the future?
I keep thinking this going to get better. I know it is not I want to spend more time with my family here in Georgia and NY
So far, which years have been the best years in your life? What have you done during them?
The best years of my life is when I owned my diner. Also when my husband and moved and the Amish moved near us they were so good to me. I had the best time getting to know them. Also the time I spent with my family and my best friend Kathy in NY
What would you like to do if you didn’t have your condition?
Do something like selling my bake goods and homemade jams at farmers markets. Get back to sewing and make totes and purses. Getting out and driving again and visiting family and friends. To drive to NY to see my sons and family and friends up there and drive to Florida to see my friends and mother in law.
If you had to describe your life in a sentence, what would it be?
Poor with mirages everyday. I have to take it one day at a time
Finally, what advice would you give to a person in a similar situation?
Just try to keep smiling pray to the good Lord above for some peace in all this and don’t give up.
