Our phone chat #16 – Tania

Maria: Hi Tania, thank you for sharing your epilepsy story with me today.

Tania: That is okay. I don’t often speak about my epilepsy because I just accept the way things are now. My first seizure happened when I was 16 years old, straight after I had a haircut, in fact. My parents clicked that something was wrong with me and I felt upset that I didn’t feel normal. I eventually ended up by going to Melbourne and being diagnosed with Rassmussens Encephalitis.

Maria: Goodness! That is a rare neurological disease. I have to give a text book answer here, Tania, straight from Dr Google. It says that Rassmussens Encephalitis is characterised by frequent and severe seizures a loss of motor skills and speech. There is also weakness on one side of the body.

Tania: All of that is true. I can’t use my left arm to do the simple things like pick up a cup. My left leg drags and the neurologists say that I have Todd’s paralysis.

Maria: Todd’s paralysis is something that I know about. It means that there is a brief period of temporary paralysis after a seizure and it usually affects one side of the body.

Tania: That is right but they haven’t explained why I still drag my leg. I need to use a walking stick to get around. There are days when I have lots of seizures. My arm shakes, my fist clenches, and I feel cold. I haven’t had a tonic clonic seizure for years, fortunately.

Maria: How do you manage day-to-day?

Tania: I have a team of people who come in and help me on weekdays. In the mornings I am helped with my personal cares. Someone showers me and makes sure that I have taken my meds. They come in again at lunchtime to make my lunch and to make my bed and anything else that needs doing. In the afternoon, they help to get my evening meal prepared. I really do need their help because my seizures have got worse over the years. I also lose my balance and so I fall down quite a bit. Don’t let me start talking about my memory, which is like a sieve.

Maria: That is pretty tough but you do have a positive attitude towards life even if you say that epilepsy sucks!

Tania: It does rather but I am not lonely. I have lovely family and friends who keep in touch. I like to muck around on my computer and on Facebook and I talk on the phone quite a bit. I am happy in myself and I am grateful for the small things in life like my garden. My son is 13 years old and I want to be around for his 21st birthday.

Maria: That is every mother’s wish. I am sure that you will be there to enjoy the day. Thank you for your time.