Imagine not being able to have control of your body. Literally.
This is something those living with Dystonia, a neurological movement disorder, experience daily. In the U.S. alone, as many as 250,000 people are affected by the primarily hereditary condition that causes severe involuntary muscle contractions that can interfere with everyday life.
Treacy Henry, 31, is one of those 250,000. She spoke with RIZZARR about how she is working to raise awareness on Dystonia.
Henry is married and lives in South Hadley, MA. She was 17 when Dystonia began to affect her entire body and has had to modify much of her life due to it. Simple hobbies like quilting, reading or drawing are not easy as her hand will shake or her head will tilt – all out of her control.
Over the years, she has worked hard to get Dystonia in the public eye including fundraising for the Dystonia Medical Research Foundation and participating in the Dogs for Dystonia Virtual Walk. In 2012, she raised the most money for the walk (along with her aunt and an adorable dog named Nico) and tied for most raised money in 2013.
Henry is working along with others who have the disorder and those close to people who have it to get national recognition of the disorder by means of an “awareness month.” We see these all the time – American Heart Month in February, Men’s Health Month in June, Breast Cancer Awareness Month in October. With awareness months comes recognition, fundraising, education opportunities and above all – ways to help those in need.
RIZZARR spoke with Henry about the ongoing We The People petition to recognize September as Dystonia Awareness Month and what it means to live with the disorder.
RIZZARR INTERVIEW WITH TREACY HENRY
1. For those who have never heard of or seen someone with Dystonia – can you generally explain what it is?
It is a neurological movement disorder. Basically, the signal from the brain to the muscle doesn’t function properly. If you want to pick something up or walk, your brain tells muscles what to do. The signals from my brain don’t tell it the right thing. Muscles will contract that you don’t want to contract and can cause spasms, tremors and really awkward postures. Dystonia varies from person to person. All the symptoms are made worse when you’re trying to do something.
2. What can those with Dystonia do to ease the symptoms?
The cause of dystonia is unknown at the moment and there are no medications that can prevent it or slow its progression. However, there are some medications that can help some people – but not everyone. Botox injections can help if people have Dystonia in a specific muscle. But if it is in the whole body – like myself – that isn’t an option.
There is also deep brain stimulation that is basically putting a pacemaker in one’s brain. DBS involves putting small electrodes that are connected to a pulse generator into certain brain regions that control body movement. The controlled amounts of electricity are sent to exact regions of the brain generating the symptoms of Dystonia, interfering with and blocking the signals causing the symptoms.
3. What form of Dystonia do you have? When did it start?
Mine is generalized Paroxysmal Dystonia. I have it in my whole body and the para word means it isn’t constant. Some people have one arm that is always twisted in a certain position 24 hours a day. Mine varies between different parts of the body. One day, my feet will be curled up. Another day, my hand could be contracted, making it hard to type or eat. It can even affect my breathing.
When I was in high school at age 15, I had a brain and inner ear infection. I had a 105 degree fever and was really sick. It took doctors years and years to even figure out that it was a brain infection that had happened. Soon after the infection, I had Dystonia in my right hand. It would shake so hard that I couldn’t hold a pencil without dropping it or a glass without spilling it. About a year after that, it spread to my whole body. When it started, I went to school for part of the day then was tutored at home. It took me five years to finish high school and that included summers – and it took that long because I couldn’t do as much as everyone else. College was actually easier because I could schedule certain days and have breaks between classes. Yet even with my going to classes, I missed a lot and didn’t do additional things like being a part of extracurricular groups or going out with people.
One issue many don’t often see is a Dystonic storm. These “storms” are essentially all the muscles contracting. In college, I would have storms for six hours on end. Now that I am not working, I can go a whole week without it. Normally a storm happens two to three times a week for me, and it will usually last at least an hour, maybe a couple hours.
4. What have been the positives and negatives of living with Dystonia?
I have met a lot of people I never would have met, connected with all sorts of people from all over the world who have Dystonia. Having Dystonia has helped me realize what is truly important in life and to not stress about little things. Some things don’t matter as much. You realize who is really your friend and who really cares about you. It helps you prioritize life and what matters to you. The hardest thing is that nothing is predictable. I am a super perfectionist and control freak, and I like to plan things, have schedules. However, I never know how I am going to be each day. I’ll think I am going to cook dinner but never-mind, because I have no control of my hands that day.
5. Is it hard to create or keep relationships while living with Dystonia?
I know for a lot of people it is really hard dating. There are people who have been married and then ended it because the other person didn’t want to deal with it. I am really lucky to have met Dan, my husband. I met him when I was 21 and told him about my symptoms. I wasn’t diagnosed until I was 28.
He believed that my symptoms were serious and real and is the one who really pushed me to go back to doctors to get a diagnosis. I had seen numerous doctors in the past, but none had been familiar enough with Dystonia to diagnose it. Many had told me it was psychosomatic. Some even made ridiculous claims that I was upset I was an only child, I was school-phobic, or that I didn’t have a boyfriend. One doctor told me I could control my symptoms. Believing him, I tried to take a bath, even though I was not feeling well, and almost drowned. I think it’s especially hard, as a teenage female, to get doctors to take you seriously.
Dan was great from the beginning about understanding but not doing the whole “I am so sorry for you” thing. He helped me with finding ways to work around things. If I can’t do something because one hand won’t work, he’ll come up with some way so I can use my other hand. He’s modified activities in ways I thought wouldn’t be possible. I really lucked out that he is a very good person to me.
6. Where did the idea originate to recognize September as Dystonia Awareness Month?
Dystonia awareness activities had been taking place in June but it wasn’t a recognized awareness month. My friend Mike Delise has Dystonia and he came up with the idea that if we had a nationally recognized month for Dystonia activities and awareness in September, we would get things like schools and health classes involved and learning about it. When you have an awareness month, you can have more events, fundraising, and research – all which Dystonia needs. You can ask people to support Dystonia but if they have never heard of it before, it is really hard. Having an officially recognized awareness month by the government for Dystonia would be a major help.
7. What will happen if the petition goes through? And if not?
If we get all 100K signatures by June 26th, we will get a response from the White House about making September recognized as Dystonia Awareness Month. We’ll get a response saying either “Yes, we’ll do it” or “No, this is why” but either way, we will get a response.
If the petition does not get enough signatures, the plan is to still have September be Dystonia Awareness Month but it wouldn’t be officially recognized that way. We would still emphasize fundraising and promotion during that month as much as possible. Most likely, everyone “knows” someone who has Dystonia. It may be you do not know specifically that they have it or the person themselves doesn’t know they have it. It takes a very good neurologist to rule out other symptoms and eventually come down to saying someone has Dystonia. This is all the more reason to sign the petition and help get people talking about it, learning about it and working with us to find treatments and help those living with Dystonia.
Learn about and sign the petition here: https://petitions.whitehouse.gov/petition/promote-dystonia-awareness-recognizing-september-dystonia-awareness-month/c64kfwpJ
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