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A personal account of living with Tourette Syndrome & associated disorders, part 3: Quality of life

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 multisubject 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

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  1. Thank you for taking the time to write this personal account of what you went through and what struggles you continue to go through. If only… things had been different, but they were not.
    I know that my son continues to struggle with many of the things you mentioned and it hits my very soul that I can’t take away his pain and struggles. Life is clearly not fair.
    You have taken a huge step in writing about your experiences and have given yourself and others a platform of hope that things can get better.

    • You’re more than welcome. Often, I also say to myself that life is clearly not fair but “it is what it is”.

      I know how your son feels at this age and how he will feel as he goes through the rest of his life, but him knowing that you will be there every step of the way, believe me, that will be very reassuring for him.

      • Thank you so very much for your feelings on this. It helps a lot to understand my son who was diagnosed with TS. From what I understand, you are still on Clonidine and that is definitely helping. However, I am not sure whether that is helping for ADD or the tics. Please clarify.
        (for a child with tics only (no ADD) would clonidine be effective? And, of course we will see a professional before taking anything, but just doing research before we start taking would assist immensely.
        Howmuch of the clonidine are you taking?
        Is there anyone else on here, who is taking medication for tics willing to share their experience? Howmuch of what type of drug, how effective, and what are the side effects?

        • You’re welcome. I take half of a ,025mg tablet of clonidine six times per day for a total of .075mg per day. Yes it does help with my ADD also and its side-effect profile is the best of all the meds I’ve taken since I started treatment for my TS+ in 1999. A few months ago the Tourette Syndrome Foundation of Canada published a research booklet on the various drugs available for TS+ and their effectiveness and side effects, and they regard Clonidine as probably the best med for TS+ for both children and adults – here is the link to go order their research booklet: https://tsfc.tng-secure.com/products/Canadian-Guidelines-for-the-Evidence%252dBased-Treatment-of-Tourette-Syndrome-%5BSoftcover-Version%5D.html. My suggestion is that before you put your child on any neuroleptic drugs, those are the ones with the terrible side effects, discuss it EXTENSIVELY with a professional.

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