My initial days of dealing with it, the anxiety, worries and the nervousness ….
The burden of having the condition and add there to is the task of hiding it from others.. it was difficult, there were times of self-doubt..
The initial days were dreadful. The burden of having it and also the daunting task of hiding it from others – I was doing whatever I can to manage.
But I felt, I was falling short. Mainly because I was not aware of all the symptoms of initial incidence of PD, that as I had not come to terms with the fact that I have the condition. Meanwhile the Neurologist started my medication – a low dose Pramipexole.
The medicine was doing its work. But with all the medicine, I used to remain nervous most of the time and there was a great amount of anxiety too. I would hesitate to go near a big group, try to to avoid gatherings, I was not being able to be mentally strong. There were many concerns, like how to move ahead with this and as I started reading more about the condition and its onset, there was fear if I can remain able, long enough to discharge all my obligations as a bread winner. My inner state of affairs was almost evident in my outer self and every now and then I would be questioned around this.
– are you alright, – you look nervous etc.
We can not expect everyone to be kind, on occasions there have been some unkind questioning from acquaintances. Looking back I realize, my concerns were getting magnified as I was trying to hide them. This went on till some years. I slowly started opening up to friends and started telling them. Things started becoming normal. I began reading about the condition. In YOPD the progression of the disease is very slow. Also the ‘tremors’ which most identify with PD is not very prevalent in YOPD. That saved me a lot of concern.
With time, my medicine doses increased. From 0.25 mg twice day when I started to 1mg tablets 4 times a day – when I stopped Sifrol.
Actually as I read further, I understood there are two distinct ways of treatment adopted for YOPD. One, where the treatment starts with Dopamine agonists like pramipexole and that Levodopa is pushed towards to later part as the disease progresses… the second being starting the treatment with Levodopa.
Going back to Pramipexole, with it came the side effects, some unnoticeable and some devastating. As my doses increased, I would have sudden sleep attacks- on many occasions I had fallen asleep while driving. Sudden sleep during a particular time of the day became common. I would get into sleep for few seconds in meeting ( I was once admonished for this). But the most devastating were the Impulsive compulsive disorders (ICD) .
Many articles I read mention that when the Doctor prescribes pramipexole to a patient, he must inform/warn the user and the caregiver of the side effects and pathological habits that the patient may develop
