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December 17, 2012Posted in: News & Information Tagged:

A Personal Account of Living with Tourette Syndrome & Associated Disorders, Part 3: Quality of Life

his blog article was originally posted on New Jersey Center for Tourette Syndrome’s TS Parents Online Blog and is republished here with kind permission.

In my first two posts, I talked about what my life was like early on and the various phases of treatment I had to go through leading up to present day. Now, I’ll talk about how Tourette Syndrome can hinder one’s quality of life, especially when it comes to work, Tourette Syndrome is not life threatening, but it can be living threatening — and what I mean by this is that it can seriously hinder you from living to your full potential. Probably the most difficult time for a person with Tourette Syndrome is the period of transition from school to the workforce and life, because Tourette Syndrome really hinders you during these periods of significant transition. For people with Tourette Syndrome this period is commonly referred to as a “transition cliff.” I know this as a fact because right from the time I graduated university to the time I was diagnosed and started treatment for Tourette Syndrome some 15 years later, I was in a void of not being able to function properly — a period where I had various jobs, many of which were part-time, so my career development suffered immensely. Many aspects of Tourette Syndrome including the mental anguish of emotions that we go through on a daily basis are very difficult for someone who doesn’t have the disorder to understand, which is why properly educating people about the disorder is very important. Even my wife, who’s known me for many years, doesn’t fully understand the many facets of Tourette Syndrome and everything I go through on a daily basis. If I myself had to describe Tourette Syndrome, I would say the following:

Tourette Syndrome is faulty wiring somewhere in the brain that manifests itself in various motor and vocal tics, and that makes you feel — in varying degrees — constantly jittery. All this taken together interferes — anywhere from a little one day to a lot another day — with your ability to function normally.

However, individuals with moderate to severe symptoms like me can, with the proper medication and family support, be sufficiently treated to allow them to enjoy a pretty normal life. I can’t stress enough how important family support is to individuals suffering from moderate to severe Tourette Syndrome, and in fact if I had support early on, it would have made a huge positive difference in my life. By not having the support I needed and because as a child the disorder makes you sensitive, I in turn often felt mistreated, misunderstood, confused and alone. Even today, I still feel alone at times because I still can’t tell everyone about my Tourette Syndrome. To make things even more interesting, starting in the Spring of 2011 my wife was insisting to me that based on everything she now knew about this disorder she was quite certain that Tourette Syndrome alone did not explain all my behaviors and mannerisms. So in early Spring 2012 I went to talk to my neurologist about this, and he referred me to another neurologist that specializes in related disorders. After a lengthy evaluation, this other neurologist confirmed the fact that I also suffer from a good case of Attention Deficit Disorder or ADD. Now I know why whenever I worked on multi-subject problems in school I always had a difficult and frustrating time in processing all the information presented in them — it required me to re-read those type of problems so many times just to make all the information stay in my brain. This other neurologist put me on Ritalin, but right from the start the side-effects — namely confusion and dizziness — were too strong, so I stopped taking it and I have decided not to try anything else for my ADD. Luckily, there is some benefit I get for my ADD from taking Clonidine, so I will stick to taking this med only. I’m very glad all is better now, but I have to say that up to the time I started treatment for Tourette Syndrome — which was in my late 30s — my life was especially difficult. But I’m very proud to say that during that very difficult time of my life, I still managed to look after my severely mentally ill father, complete a university degree with solid grades and attain a graduate-level professional designation. Looking back, I must say that one of the most difficult parts of living with the disorder is the frustration and loneliness one feels because of the ignorance of people in understanding the disorder. Trying to convey to them that Tourette is more than just a tic is still difficult today, and many more people still often associate the non-tic parts of the disorder — which are often more of an hindrance — as being character weaknesses rather than medical disorders. The last thing I want to say about my experience living with Tourette Syndrome and its associated disorders is that I will always be grateful to my caring wife for pushing me to seek the medical help I so very much needed and for having a great amount of patience to put up with my tics and associated disorders. With no family member to turn to, it goes without saying, that without her support I never would have made it this far. Below is a favorite quote of mine which if practiced by the public would certainly reduce a good part of the ignorance it has towards individuals with Tourette Syndrome:

We observe only what happened, and not how it happens. When we are doing something it has in fact already been done. – G. L. Lichtenberg

2 Comments

  1. Thank you so much for the insight you have given me and my son. He was diagnosed with TS when he was 12 and had all the labels (which) I hate that go along with TS. We have had a challenge with getting help and still do because no one understands. I am worried that now as a young adult (23) he will have a hard time getting a place to live on his own. In the past he has had many jobs but only recently he has held the current job now for 2.5 months. I am truly proud of him, I had to raise him on my own because his father did not understand and did not want to understand TS.

    Once again thank you for your openness of TS.

    • Hi Nicole
      Thank you for your comment. I would like to let you know about our weekly virtual support groups in case you are not already aware of them, as I feel they are a huge help. We have virtual groups for youth with Tourette, adults with Tourette, and for parents. If your son is interested in receiving support from others like himself, or if you would be interested in speaking with other parents, then please feel free to contact Melissa, our Virtual Support Coordinator at virtual@tourette.ca where she can answer any of your questions and get you set up for these helpful weekly calls!

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