Please help us in our petition drive to make September Dystonia awareness month! Visit the petition site here. Greater awareness will lead to better treatment options and understanding for this difficult disorder.
If you or a loved one has dystonia, I encourage you to visit Diagnosis Dystonia for a comprehensive guide on living with dystonia.
1. I live with cervical dystonia, a neurological movement disorder that causes intense muscle spasms in my neck and shoulders, head rotation, head tremors and constant pain.
2. I was diagnosed with it in the year: 2010
3. But I had slight symptoms since: 2010. I know I’m really fortunate it got diagnosed right away.
4. The biggest adjustment I’ve had to make is: Limited driving when I have kids under 18 who need me.
5. Most people assume: I am strong. If I am, it’s because I have to make that conscious choice every single day.
6. The hardest part about mornings are: Getting out of bed and knowing the pain is going to start.
7. My favorite medical TV show is: Haven’t watched medical shows in a long time. But I love Mad Men!
8. A gadget I couldn’t live without is: Do I have to choose? Love Apple products and my Cuisinart. I hate chopping.
9. The hardest part about nights are: Insomnia, but I had that before I had dystonia
10. My daily routine: Devotions. Yoga. Lots of rest. Homeschooling. Blogging. Cooking. Anything else depends on how many spoons are left.
11. Regarding treatments: I get Xeomin injections every 3 months to be able to help keep my head straight and reduce tremors. I use essential oils and muscle relaxers to help with pain relief. Lots of yoga and exercise. I’m looking forward to medical marijuana approval.
12. If I had to choose between an invisible illness or visible I would choose: Don’t know. They both stink.
13. Regarding working and career: I’m unemployable in the corporate world now. I’m working on building up my blog and freelance writing. I also have lots of ideas that I don’t have the time to get to right now!
14. People would be surprised to know: 1. Anxiety is a big part of this disorder 2. What my trapezius muscle feels like most of the time.
15. The hardest thing to accept about my new reality has been: dependence on other people and being patient with them when they don’t understand.
16. Something I never thought I could do with my illness that I did was: have somewhat of a normal life. I was incapacitated for nearly a year.
17. The commercials about my illness: There aren’t any. We don’t have a celebrity spokesman although the Michael J. Fox Foundation has added dystonia to their research since it can co-exist with Parkinson’s for many people.
18. Something I really miss doing since I was diagnosed is: Jumping in the car with my kids and taking them anywhere I wanted. Now it’s got to be planned with someone else driving.
19. It was really hard to have to give up: see 18.
20. A new hobby I have taken up since my diagnosis is: Yoga
21. If I could have one day of feeling normal again I would: Be incredibly happy.
22. My illness has taught me: God is in control and to trust Him even when things are not going the way I hope. To be thankful for small things.
23. Want to know a secret? One thing people say that gets under my skin is “God doesn’t give you more than you can handle.”
24. But I love it when people: Ask me what dystonia is, because it is so misunderstood.
25. My favorite motto, scripture, quote that gets me through tough times is: It’s hard to pick but this is a favorite. 2 Corinthians 12:9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.”
26. When someone is diagnosed I’d like to tell them: I’m so sorry. I wouldn’t wish this on anybody. Welcome to the world this difficult and unpredictable disorder. You’ll learn what works best for you as time goes on. Life is still worth living.
27. Something that has surprised me about living with an illness is: Life goes on and the time passes. It’s up to me to make them most of it.
28. The nicest thing someone did for me: Shoutout to my family who patiently pick up the slack for me. I know this affects them every single day.
29. Why I advocate: We need more awareness and more treatment options. Dystonia needs to become as easily recognized as other major diseases like Parkinson’s, MS, Fibro and countless others.
30. The fact that you read this list makes me feel: thankful that you took the time to read it!
Additional information and support for dystonia:
Rest Ministries (support for chronic illness and pain)
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