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 Ian is the first of many wonderful people to get back to me with his answers. Please take some time to get to know what it is like When Your Body Betrays You.
This is Ian from Menomonee Falls, WI.
What is your current diagnosis?
What is your biggest worry living with dystonia?
Loss of independence
What is the hardest emotional thing to deal with while living with dystonia?
What is the hardest physical thing to deal with while living with dystonia?
Progressively decreasing motor control with increasing pain
What do you wish people knew about dystonia most?
This disorder is often progressive, very difficult to effectively treat, and there is no cure.
What do you not like to hear when someone is comforting you or caring for you during a dystonic storm or episode?
God does not give us more than we can handle.
What is special about you that you want others to know that has nothing to do with dystonia?
I am a very intelligent and caring person.
What is special about you because of dystonia?
I have learned how to truly live one day at a time and be very patient.
Do you have pain because of dystonia?
Yes, I get body-wide pain due to dystonia.
How do you handle the pain?
I cannot take pain medication outside of a hospital setting. So, I rely on slowing down if necessary, accept the pain as something I must live with, modify my activities, continually re-balance my rest versus activity, pay attention to what triggers pain for me, use microwavable hot rice packs, adjust my body position whether awake or sleeping, gentle stretching, pay attention to what my body tells me and pray.
When your body shows physical symptoms of dystonia, how do you handle the stares and worried looks from loved ones, friends and strangers?
If timing and setting is appropriate I open a discussion to educate them about my dystonia. I openly and honestly communicate to loved ones and friends what I am experiencing at the moment and any assistance I might need. I ignore the stares of strangers unless they approach me. If they approach me I briefly and simply explain what I am experiencing at that moment and educate them about my dystonia if they ask questions.
What kind of treatment have you been given for your diagnosis?
My Movement Disorder Specialist (MDS) has me on Tizanadine and Clonazepam with Acetaminophen as needed. My Physiatrist injects me with Botox every three months. I also visit a Physical Therapist occasionally.
When were you first diagnosed? Have you been diagnosed? How long have you lived with the symptoms. Have your symptoms progressed?
I was first diagnosed in the mid-90’s with focal dystonia of the right hand by a MDS. I have been through an array of testing such as brain imaging, genetic testing, electromyography (EMG) and multiple physical examinations.
What do doctors think is the cause of your dystonia? What do you think is the cause?
My doctors have been unable to determine the cause of my dystonia so it has been classified as idiopathic.
What have you learned about yourself while living with dystonia that has helped you become a better person?
I have learned to be more patient in general, more empathetic to people with disabilities, and how to live life one day at a time enjoying life the best that I can.
What medication or treatment has worked best to treat your symptoms?
The medications I listed above give me the most, but not anywhere near complete, relief. Hot rice packs and gentle stretching have been very useful as needed.
Other than prescribed what seems to tame your dystonia?
Slowing down if necessary, accept the pain as something I must live with, modify my activities, continually re-balance my rest versus activity, pay attention to what triggers my dystonia symptoms, use microwavable hot rice packs, adjust my body position whether awake or sleeping, gentle stretching, pay attention to what my body tells me
How has dystonia affected your life? Your work? Your life at home? Your social life?
The combination of dystonia with multiple other medical conditions caused me to end my roughly 25-year career as a CPA nearly 10 years ago. My last position was firm-wide Assistant Director of Audit & Accounting. Frankly, I grieved over the loss of my career for quite a while. My symptoms do not allow me to work at all anymore. Early on I tried working just a few hours a week at an electronics store but that proved to be too much for me. I cannot sit, stand or walk except for short periods and have to frequently change positions/activities in order to avoid triggering painful spasms. Just before I stopped working my life was filled with long work hours, heavy business travel and family life, with not much socializing except with co-workers and my family. Now my son and daughter are young adults starting their careers. I have a beautiful baby granddaughter thanks to my son and his wife. Unfortunately, they live too far away for me to visit very often. My dystonia now limits me to driving no more than 10 miles so I rely on taking visit trips with local family members who can drive. My daughter lives locally but is extremely busy starting her career. Thank goodness for smart phones and FaceTime! My current face-to-face social time is frankly pretty limited. I am working on that given my dystonia-related limitations. I do belong to an unrelated support group. I am very active on Facebook in the Generalized Dystonia Support Forum, multiple other pages and with many old friends/acquaintances. Facebook is an activity that I can easily come and go from in order to avoid triggering painful spasms. Dystonia prevents me from sitting at the computer except for relatively short periods of time. This prohibits me from maintaining a part-time computer-based job. As the motor skills in my hands have progressively deteriorated I have started using voice recognition technology to type. I live in a one-bedroom apartment. My dystonia makes it very difficult or impossible to do activities like cleaning the apartment or cooking. As a solution I sometimes trade favors with friends, family and neighbors. I cannot afford cleaning or cooking services. I do also want to mention that my dystonia makes walking difficult for activities. I normally walk slowly with a cane but need to use a scooter or wheelchair for distances that I cannot handle with just a cane. I use scooters offered in places like grocery stores. I own a scooter but need assistance loading the pieces into a vehicle. In addition, my scooter has been inoperable for some time, and I cannot afford to get it diagnosed/fixed. I also have a wheelchair but cannot operate it on my own due to my dystonia symptoms. I have to have someone push me around.
Are you part of any support groups? If so, has this or these support groups helped you? If so how?
I attend a support group not related to dystonia and find it helpful in handling life. For dystonia I rely on the Facebook Generalized Dystonia Support Forum and find it very useful. I have noticed too that helping others helps me.
Why did you agree to this interview?
I want to continually increase awareness about dystonia and educate people based upon my experiences.
What is your best or worst story that has to do with dystonia?
I have had many falls, some requiring medical attention. On a lighter note let me share a true story. I ate out at nice restaurant with my extended family. During the meal I loaded my fork with peas. As I raised it to my mouth, a sudden strong hand spasm caused me to flip the forkful of peas over neighboring tables of strangers. We all laughed so hard, especially my kids! The strangers took it well.
Briefly describe what a typical dystonic day is like for you?
Pain and spasms do occur even when I am asleep, sometimes waking me to the point that I have to get up for good or at least move around slowly for a bit and try to get back to sleep. The first 1-2 hours are spent reducing stiffness and high levels of painful spasms from sleeping so still or in odd positions. I walk around slowly, do mental relaxation exercises, and perform mild stretching. Then I plan my day based on how I feel physically once I feel I have relaxed my body to what I call my current normal baseline. My plans are all subject to change based upon how my dystonia symptoms are at a given point in time. On and off throughout the whole day I will check Facebook, emails, texts, etc. I try to reduce my computer and iPhone time in late evening to wind down, clear my head, and get ready to sleep for the night. Any shopping or errands are usually done in the afternoon due to morning medication side effects. My support group meets on various evenings.
Please share one really good joke.
When my son asked how old I was, I teasingly replied, “I’m not sure…” “Look in your underwear Dad,” he advised, “mine says I’m 4 to 6.”
Ian would also like to share the websites below with you to help continue promote more awareness about Dystonia:
Dystonia Medical Research Foundation (DMRF) home page at https://www.dystonia-foundation.org/
DMRF Online Support at https://www.dystonia-foundation.org/online
If you have any more questions for Ian 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.