I want to come forward with my experiences of living with a movement disorder called Dystonia. However, when discussing these types of illnesses it is important to start from the very beginning. My interaction with the illness began in 2018, but in order to provide the proper context for discussion it is important to go back to 2016.
Actually, there are some ideas I need to express regarding my personality that is relative to the events that took place in 2016. Prior to that date, I would describe myself as an active person. Throughout all levels of my education, I always strived to be the best student and professional that I could be. As I think back it reminds me of my high school days when I had outstanding grades and pursued a lot of extracurricular activities like: volleyball, basketball, student government, Amnesty International, Model United Nations, national honor society among others.
More specifically, I had an active mind. A healthy mind, but one that was constantly being challenged by new opportunities. I handled things in the best ways that I could, which usually turned out to be excellently. I took great pride in my accomplishments and I loved sharing information about my experiences with others.
The point I’m trying to make is that throughout my upbringing I had a healthy mind, body and spirit. If you found this article on Google you probably would say the same thing about yourself. What you may also have in common with me is that you may have gone through a period of mental health struggles.
From the end of 2015 to Spring of 2016 I had a very difficult time managing a mental illness. I do not want to share the name of my diagnosis, but it isn’t unlike any one that you may have experienced in your life. One part of mental illness that I must share with you is the “mania” that is associated with the different diagnosis that comprise the spectrum of mental health issues.
Dealing with mania was one of the most difficult parts of my life. When you experience mania, you have too much energy and you start to applying it in every way possible. You talk too quickly. When you come home you kick off your shoes as quickly as possible. You go from one thought to another at an extraordinary pace. While experiencing mania you may not feel that you are doing anything wrong. If you were also an active, busy person like me you probably will not notice mania at all.
Now that you’ve got an idea of what it is like to experience mania, you probably see how this can be very dangerous. People who experience mania often find themselves in situations where they can potentially hurt themselves. They usually end up having suicide attempts or having some other type of episode that could cost them their lives. From Winter 2015 to Spring 2016, mania was a dominant aspect of my mental health.
One thing that helped me get out of mania is hearing about celebrities and athletes who were coming forward to talk about mental health issues and destigmatizing them. I am a basketball fan and it was great to hear of players like DeMar DeRozan and Kevin Love come forward and talk about their experiences with mental health. It also hit me in a positive way when Simone Biles and Naomi Osaka came forward with their experiences. I know that if I was touched by these conversations, there are many others who are feeling the same.
When you’re suffering from mania and other psychosis related symptoms, psychiatrists will prescribe antipsychotic and antidepressant medications. These medications are given out to just about everyone who has a lapse in their mental health. The unfortunate part is that the medications can have side effects. I developed Dystonia after a couple of years of taking antipsychotics and antidepressants.
In 2018, I started graduate school and about two or three weeks into it I started to notice involuntary movements of my arm. As an active student, I always enjoyed sitting in the front row of the class, preferably in the first seat. As the involuntary movements began their onset, I became curious if other students were able to see them. I looked over my shoulder one day and it became obvious that the other students could see what was going on. Sometimes my professor thought I was raising my hand to ask a question but it was only an involuntary movement.
If you are dealing with the pain and discomfort of Dystonia, Tardive Dyskinesia or any other movement disorder you are not alone and I’ve got some advice for you:
Acknowledge Mental Health for What it Is
If you have a medicine-induced movement disorder then chances are you developed it through the process of taking antipsychotic and antidepressant medications. Do not look at your struggles with mental health as something to be ashamed of. I understand it is difficult to talk to other people about it, but you must realize that you first must psychologically accept the fact that you have or had a mental disorder in order to truly understand it. It took me years to feel comfortable enough to talk to other people about the symptoms that I experienced during mental illness and the psychical ones that I experience today. I am now confident, and I no longer shut away this part of my existence. It still isn’t one of my favorite things to talk about, but now I have the courage to do so and I hope you do as well. Even if you have no interest in telling other people, at least having the courage to tell your doctors exactly how you feel is paramount.
Build a Support System
At first, I can pretty much guarantee that you are going to have a difficult time telling other people about the symptoms you experience. I understand that everyone does not need to know your personal business. However, I do think building a support system is a paramount coping mechanism. I can not express how wonderful it was for me to have my family’s support during and after mental illness and the current movement issue. Multiple family members have driven me to my doctor appointments, helped me manage my medications and offered me assistence throughout the process. Some of my younger family members did not know-and some of them still do not know-the severity of what I went through but they still offered me help anyway. One example that I will never forget is when my younger cousin gave me a call and said that she didn’t really understand what I was going through but she was praying for me and asked if there was anything I needed her to do. She gave me this call from the bottom of her heart and it still brings tears to my eyes every time I think about it. I am truly blessed, I have some wonderful people in my support system. My close friends have been very supportive, especially Robert Cunningham III, he has supported me through the entire process. I’ve also had three great case workers and two stellar doctors and a nurse practitioner that have been helpful for me along the way. Building a support system is one of the most important things you can do to handle your struggles with mental health and movement disorders.
Accept Your Limitations
With any of the movement disorders, you are not going to be able to psychically do all the things you’ve done in the past. This will create a psychological hurdle. It is easy to become depressed and anxious due to the unacceptance of the abilities that you can control. It is important for you to realize that instead of trying to do all of the activities you would usually do, instead you should focus on simply doing what you can. If you focus on doing what you can, over time you will be able to accomplish more of what you want. Personally, I did not accept this until recently. Admittingly, I was very depressed that I couldn’t exercise the way I wanted or see my friends and family. In 2018, I missed the Christmas holiday as I had to stay home because I couldn’t get out of bed. Since I am a family guy, it torn me to pieces that I couldn’t see them on Christmas. When you’re dealing with Dystonia, Tardive Dyskinesia and related movement disorders there is a significant chance that you will miss out on some of the events and things that make life worth living. Not seeing my family on that day, motivated me to not let that happen again. I’ve worked very hard by working out, changing my diet, taking my medications and letting my support system know the ways in which they can assist with my recovery. Accepting your limitations takes courage, but you can do it. It may not happen overnight, but if you acknowledge what your limitations are, and you are willing to work on yourself to improve your mind and body, you can beat the challenges ahead of you.
Medication, Botox Injections and Deep Brain Stimulation (DBS)
From 2016 to 2018, I took antipsychotic and antidepressant medications. The reason why I stopped taking them was because I tried to take them along with medication for involuntary movements and it just wasn’t working out. Most people can take both types of medications and things will go well. I am very sensitive to medications, and when I was taking both I felt overmedicated and I requested to be taken off the antipsychotics and antidepressants. For me it was either one or the other, but taking both could no longer go on because I could not function properly. From 2018 to the present, I currently take medications to manage my Dystonia symptoms. I also take Botox injections a few times a year to also manage my symptoms. Even though I have been taking medications for a long time now, my symptoms remain severe. I’ve talked to my healthcare professionals about Deep Brain Stimulation (DBS) and I understand that at some point I am going to have to make a decision. If the medications and Botox are not working well enough, DBS may be the best remaining option to reduce or eliminate my involuntary movements. This is a dilemma I am currently facing. I do not want DBS, but it’s still an option that’s on the table. I would not recommend going for DBS as soon as you notice your movement disorder. Try to manage your symptoms with medication first. If that doesn’t work then try taking medications and Botox injections. If you’re still having severe problems then research the pros and cons of going through DBS and make the best decision you can possibly make.
Conclusion
Medicine-induced involuntary movements can be disruptive, but if you are willing to take the challenge of getting better, you can make incremental changes in your life. You are never alone, there are many people throughout the world who are going through the same thing you are. Try your best not to become anxious or depressed. Accept the realities of your situation for what they are. Build a support system and try each and every day to implement activities that will make your life better.