A few weeks ago I posted a link to this blog in a few dystonia support groups. Then I asked if anyone would be willing to let me interview them and post their answers on this blog. To my surprise many volunteered. Several agreed, this might be a good way of helping promote more awareness for dystonia. I sent out a basic Q and A and Missy is one of the wonderful people to get back to me with her answers. Please take some time to get to know what it is like When Your Body Betrays You.
This is Missy from SC.
1. What is your current diagnosis?
Dystonia, Meige syndrome (Blepharospasm with Oromatidibular Dystonia), Blepharospasm, Adductor Spastic dysphonia, Dysphagia
2. What is your biggest worry living with dystonia?
Being a burden on my family.
3. What is the hardest emotional thing to deal with while living with dystonia?
That I have lost my independence which requires me to have to ask for or pay someone to help me. I cannot do things with my children like I use to. This makes me sad for our youngest daughter, she is 12 and we stayed on the go before I got sick. We would take off for girls days or weekends all of the time.
4. What is the hardest physical thing to deal with while living with dystonia?
I would say driving and talking. I’m not sure if this qualifies but I cannot be in an environment that has lots of movement and stimulation. Grocery shopping is very hard, PLEASE don’t make me go to Wal-Mart, but the hardest one is church.
5. What do you wish people knew about dystonia most?
That it is real. It’s not a choice that I have made. As of yet I do not have a way to suppress it and it causes extreme loneliness.
6. What do you not like to hear when someone is comforting you or caring for you during a dystonic storm or episode?
Did you take your medicine? It makes me feel like people think you want to do this to your body intentionally. I try to stretch my dosage out to make it through the day, but I can normally tell when it’s time and if it’s not I try to hold off to get closer.
7. What is special about you that you want others to know that has nothing to do with dystonia?
I am an intelligent, independent person that is driven to succeed. My faith in God is very strong, my family and my children are my life. I have spent the majority of my life trying to take care of people and make sure they knew they were loved.
8. What is special about you because of dystonia?
For some reason I have always known that God was with me and He is going to heal me. I believe that this is a journey that I must take for self-improvement, to help others find easier ways to get diagnosed or I hope to help find some medical breakthrough. I have tried to look at things from a positive point of view, which is not always possible. I have been blessed that God has brought some wonderful people into my life. I call them my “Earthly Angels”. They have been there to help me with so many things. This has been a humbling experience. I have learned to accept help instead of being the one helping others. I have been blessed to watch God change people’s hearts as the Dystonia has continued to weaken my body, but strengthen my faith.
9.Do you have pain because of dystonia?
No, not really pain, I get very uncomfortable and I have a massage therapist that helps me tremendously!! I understand that so many people live with terrible pain. I cannot imagine how difficult that would be on top of the issues I personally go through.
10. How do you handle the pain?
I try to rest if possible. If it’s muscle related then I will try massaging it, stretch it or take ½ of a muscle relaxer.
11.When your body shows physical symptoms of dystonia, how do you handle the stares and worried looks from loved ones, friends and strangers?
If I’m going to be in a group of people I try to wear sunglasses to hide my eyes, my eyes are the first to go in a crowd. When we are at a friend’s house I normally ask in advance for a place I can retreat if I get “overload”. I avoid large crowds as much as possible. I do not go out a lot and I have very few places that I will go alone. No one usually asks but I tell them as much or as little as they want to hear.
12. What kind of treatment have you been given for your diagnosis?
Medication and Botox injections
13. When were you first diagnosed? Have you been diagnosed? How long have you lived with the symptoms. Have your symptoms progressed?
I was officially diagnosed in December 2014 with Blepharospasm and yes it has continued to affect different portions of my body. Every time I was told it does not normally move any further within a visit or two it had began to affect another area.
14.What do doctors think is the cause of your dystonia? What do you think is the cause?
There are so many maybes, that unless you know you have family member(s) that have it which would make it hereditary there does not seem to be a way to know for certain. Maybe a medication you had taken, maybe a fall or injury…? I have begged for tests, but apparently there are no test to determine if you have Dystonia, but they can rule out other medical conditions. I am clueless. I do know that during stressful times it’s a bit worse. So, I do believe stress is a big trigger factor, but as far as why me? I have no idea.
15. What have you learned about yourself while living with dystonia that has helped you become a better person?
I did not know how to relax my mind or body. When I would sit down I was normally thinking about something I needed to do. It was very hard to do, but now I’m pretty good at it. I am lucky if I can get still leaning back, close my eyes for a little while and can then turn everything off. It does not always stop, but it helps. My children have become more independent, which is a good thing, because I think I have over mothered them. It has been the most difficult on my husband. He has had to incorporate so much of of the things that I can no longer do or require assistance with to help me, all while he is still working hard. We have both been through some pretty tough issues in the past few years, but thank God He gives one or the other strength to hold each other up on really bad days. I think it will make our 27 years marriage stronger.
16.What medication or treatment has worked best to treat your symptoms?
Botox treatments for my eyes, neck and vocal cords.
Valium – this helps with anxiety and includes or helps as a muscle relaxer.
Zanaflex – I take this if I get overstimulated and it helps calm the storms or episodes.
17. Other than prescribed what seems to tame your dystonia?
Massages. They make a big difference if I can keep up with them. The spasms cause knots in my muscles and I can normally breath better after the muscles around my ribs and chest area!
18. How has dystonia affected your life? Your work? Your life at home? Your social life?
It has changed everything. I cannot participate in my daughter’s school activities, watch both of my children perform at musical events. Cannot watch television, read for more than a few minutes, very limited driving (we even moved closer to town so I would be close to our daughters school and town). I’m pretty good at typing with my eyes closed and I am very thankful for spell check!! On occasion it will change my words up on auto correct (that’s my story and I’m sticking to it). I can drive for about 5-6 weeks between my Botox treatments, but I do not drive very far, it’s still difficult and wears me out. I have a hard time breathing, talking and eating most days. It was very rare for me not to get up and get ready for the day, which was dressed nicely, hair and makeup done. Now I have to do everything in shifts. I have invested in a few really cute hats, so with a pony-tail I throw a hat on. It is also minimal makeup most days. I cannot pluck my eyebrows, which is minimal, but drives me nuts!
I am not working now and towards the end I was able to get a college student that was awesome to help me. She would read emails and type responses for me and even drive me around. When my symptoms progressed to where I could not focus to read, talk without running out of breath or I’d have to stop and take a rest was when I started talking with my employer. I talked to my employer to let them know how things progressed and they were great to work with me the best they could. It finally got to the point that I questioned and I doubted my ability to make solid decisions mostly because of the medications I was on. I have been on private disability for the past year and I am still working with Social Security to try to get approved there.
19. Are you part of any support groups? If so, has this or these support groups helped you? If so how?
Just this group on Facebook. South Carolina does not have a support group set up. When I get stable or better I want to try to establish one. I tried joining a few, but the Blepharospasm group said I needed to be in Dystonia and the Dystonia group said I belonged in the Blepharospasm. I posted a few questions on each and the majority of the responses were very negative. I tried reading through their post to see if I could gather information, but again it was pretty negative. Needless to say I have not joined any new groups, but one day I found this group on Facebook. I loved that they share, support, and many even have bonds. It has been wonderful to ask questions, get answers or suggestions, and even people praying for you. I have become very attached to this group and I even feel like I can offer input from my experience.
20. Why did you agree to this interview?
More people need to know about Dystonia. I saw so many doctors that should have known about this and instead so many doctors told me it was all mental, that if it was Dystonia I would die in 5 years, which we know is not true.
21. What is your best or worst story that has to do with dystonia?
Best day was when I finally received affirmation from a Movement Disorder Neurologist and my husband was with me. I think we both needed validation. I cried when we left because I was so grateful that I finally found a doctor who understood, but I was also sad because I knew this was real and it was going to be a hard road. The worst story, my husband was diagnosed with Prostate cancer when my symptoms were very active, by the time he had his surgery I was functionally blind. We went to Florida for his surgery and I could not take care of him. Thank God our oldest son took off of work and went with us. He was a blessing! I was there but he guided me around and took care of his Dad.
22. Briefly describe what a typical dystonic day is like for you?
I feel like my days revolve around medication schedules, doctor’s appointment. I have good days and bad days, I try to pickup the house and do laundry. I have two sweet ladies that I call my Earthly Angels that come once a week to keep the house in order. They will take me to the doctor appointments. I try and rest up before my daughter comes home from school and my husband comes in from work so I can focus on them. I have found a few restaurants or cooking services that will deliver cooked meals. It’s actually a pretty good price per person $5-6 per serving. I can just heat it up and make steamed veggies to go with it. That has been a big blessing because having to go grocery shopping and trying to cook is too much. I do have a few crock-pot favorites. I don’t order every week.
23. Do you have a joke you would like to share?
I am horrible with jokes. Here’s one of my daughter’s: What time is it when you have to go to the dentist? Tooth-thirty.
If you have any more questions for Missy or about Dystonia please leave a comment in the comment section or send me an email through the contact form. If you have dystonia and would like to be part of this Q and A please send me an email.
Enjoy: Chocolate Turtles