Dystonia and Me: Coping with a Movement Disorder
Update on my Battle with Dystonia
Countdown, 30 days left!! My neuro says there is nothing else he can do for me! I must wait, bear with the pain, deal with new symptoms, COPE. My neuro says I have a mutant gene! So off to University of Virginia I go, human guinea pig I guess.
I do know this, I have Dystonia. I do not know the underlying hereditary condition responsible for it. Last summer on a family outing I was formally introduced to Dystonia. I didn't know the name yet but I experienced the power Dystonia could have over someone. After getting out of the pool one evening during a swim, my legs froze in a distorted, contorted like position. I have suffered from sleep paralysis in the past. But never had I experienced the loss of control during the day. Feeling so helpless I knew something was wrong. This was the catalyst to dozens of tests such as MRI's, EEG, and genetic testing. After an intial misdiagnosis of MS, I consulted with a new neuro who specializes in movement disorders. At this time I was formally introduced to Dystonia. Dystonia is a neurological movement that causes the body to have severe muscle spasms. These spasms often result in abnormal posturing and contortions. What started out like severe charley horses became painful, uncontrollable twisting of the affected limbs. I found out recently that my Dystonia is spreading to other limbs.
I began to research. What can I do to cope and relieve the painful spasms and stop dystonic storms? There are many wonderful people out there that have shared their tips in coping with dystonia. I decided to share them with you here.
Steps to Cope With Dystonia
1. Take your meds! It sounds so easy,but being compliant can be difficult for many people. As a mother of three and a pharmacy technician I need to be on my A game at all times. I found that my meds caused me to be fatigued and nauseous. My noncompliance resulted in a trip the E.R. Meds used to treat Dystonia such as Sinemet, Baclofen, and Dilantin can cause these side effects, but compliance is the key. I found out the hard way.
2.Gluten Free Diet. I have been gluten free since I was diagnosed. Gluten is a protein found in wheat, barley, rye and spelt. Not only can it affect those with celiac disease but those with neurological movement disorders and even asthmatics can benefit from eliminating it from your diet. Although it has been a hard adjustment, I have noticed a reduction in symptoms. I feel like I have made a positive change for my health. Lord knows I do long for a yummy piece of bread though!
3. Learn Sensory Tricks. I have experienced what is called a Dystonic Storm. It began with one limb painfully contorting and like a wave it spread to the adjacent limbs, trunk, arms and even my jaw. It was like an out of body experience. In this severe instance there was nothing I could do but wait and bear the brunt of the pain. In more localized instances one can try sensory tricks. Sometimes if you have touch the adjacent body part you can lessen spasticity. Those with writer's cramp( a form of dystonia) can massage the other hand for relief. In other cases a massage to the temple of back of head can be all one needs to alleviate the painful spasms.
4. Prayer and Meditation.Without prayer I would truly not be able to cope. The power of prayer can release tension and create an inner peace. In times of severe pain I have found prayer to really make it tolerable. Meditation can also relieve stress and help one ease into peaceful slumber. There are even relaxation/meditation tapes that can benefit those with Dystonia. Whatever route you choose, take time to relax your body and focus on your healing.
5.Spread Awareness. I have found people to be so understanding and encouraging. Although I feel embarrassed during the Dystonic manifestations, I have found that awareness is enlightenment. People still don't fully understand the condition, but maybe they may be a little more aware.
Well my countdown continues! I don't know what the future holds. I pray that God gives the doctor's wisdom. I am willing to be a guinea pig if it helps the future generations. For those who are battling Dystonia, keep your head up. Thanks to the dystonia community for getting me through nights filled with uncertainty. I hope my hub spreads awareness and encourages others.
God is Good!
Check out links below to hear about my Dystonia Journey!
Dystonia and Me: Transitioning to a Vegetarian Diet
- Dystonia and Me: Transitioning to a Vegetarian Diet
My journey with Dystonia has led me to transitioning to a Vegetarian diet. Here's what I learned along the way.