Joseph has whole body dystonia (generalised dystonia). He first shared his story with us in our magazine Dystonia Matters in 2009. Over 10 years later we are delighted to hear from him as he tells his updated story.

Whole body dystonia is characterised by continuous or intermittent muscle contractions which cause abnormal, often painful, repetitive movements in the whole body. Typically, the condition starts in a limb and then ‘generalises’ to other areas.

My name is Joseph Doliczny; I am 29 and have had the full generalised dystonia experience. I first experienced symptoms at age 12. My right arm would move uncontrollably. Initially I tried to ignore the signs, even learning to write with my other hand. Eventually I could not hide the symptoms anymore.

I then began my journey to a diagnosis, which took approximately two years. Countless MRI, CAT scans, lumber punctures and medication, all without any solid results. I was also tested for a terminal disease. During this time I had dropped out of education. The spasms had spread to my back and feet. It became difficult to walk, but despite recommendation I decided against a wheelchair. This resulted in me hardly ever leaving the house.

I was embarrassed about my condition. I was very selective about who saw me. I did not know what was happening to my body. Therefore I did not expect others to understand. I was bullied about my condition at school. Any type of social situation made me anxious. Not venturing from my home was incredibly damaging to both my mental and physical health. 

Eventually I received the diagnosis; I have the DYT1 active gene which can cause generalised dystonia. Finally having a name for my condition gave me some relief. As it stands, there is still no cure but at least I could then look at treatment options.

Botulinum toxin and more drugs did not help me. I was then told about Deep Brain Stimulation (DBS) therapy. I said yes right away. Despite it being a big operation, it felt like a step towards tackling my dystonia.

My consultant pushed to secure funding for my DBS procedure, and largely due to my age (15) it was approved. The operation itself consisted of going deep into my brain, in order to insert electrodes into the part which controls movement. The electrodes are controlled and powered by a battery pack in my chest, which is connected by wires running through my neck. I can easily say the operation has changed my life. 

DBS however was no quick fix. It took roughly a year of programming for the device to make a real impact. As each person’s brain is different, it is very much a process of trial and error. Once I was on the right settings my spasms were then controlled around 95% of the time. It enabled me to get back to seeing my friends and into school. Now, I work full time, drive, exercise and travel. Before I had my DBS I never imagined I would live the life I do now. 

There are a few disadvantages to the DBS. Originally I opted for a non- rechargeable battery pack. This meant every 2 years it would require an operation to replace it. This August (and 5 operations later) I decided upon the rechargeable option. I now charge myself every 3-5 days, which is done by holding a wireless charger over the battery. The other downsides are my friends asking me if I have Wi-Fi and going through airport security. Word of advice, do not tell the staff at New York airport you have a device in your chest.

Living with dystonia has changed me as a person. It has made me mentally stronger to deal with what life throws at us. I could not have survived through the toughest of times without the care of my family and friends, especially my mother and wife. 

Organisations like Dystonia UK can also offer bags of support. It is really important to reach out for help; whether you have dystonia or know somebody who does.