Recently I shared my diagnosis on a Parkinson's website and I am going to share it here. If you are interested have a read and for those close friends of mine on the South Coast, I am sure you remember where it all started!
I was 29 when I had my fourth child. A beautiful baby girl! We didn't know then what we obviously know now but my life was changing physically and mentally.
I started to suffer from severe sleep episodes where I would feel like I was being attacked, strangled, twisted and haunted. I would get up and scream at nothing, kick, punch, fight and cry in fear. I would do anything from wandering the house to kicking and punching my partner and rolling around in the bed as he would patiently sit on me and pray. He was very frightened.
It took around a year before I got treatement for the sleep disorder and by this point both my partner and I were suffering! I was suffering insomnia in between periods of the above and my partner was up and down with me almost everynight. It got to the point where I was threatening him in my sleep because I thought he was my tormentor. Even if I wasn't suffering from some intensely vivid experiences I got up and down and woke regularly on and off. My partner was suffering migraines and we knew it was time to see a specialist. I didn't want any medications that would put me to sleep as I feared it, however my specialist indicated that I could no longer go on this way and I surrendered. He called it 'deep sleep parasomnias and REM sleep disorder' but said either way they were treated the same and were similar. I was put on clonazepam 0.5mg which was increased to 1mg with the threat of tranquilisers if the medication did not work. We got some relief some months on and I am much better these days... But little did I know this was the beginning of a much bigger monster! Later my neurologist would make the link.
When I started to twitch on my right side my GP said to me 'Do you have Parkinson's Disease in the family?' I was 30 now. It was a bit frightening hearing him say that. He sent me to the first neurologist who knew something was amiss but things didn't add up to it being essential tremor, however, he said it was either PD or ET and sent me off telling me time would tell.
I then moved 6 hours away from Sydney and saw the next neurologist after my new GP confidently said I had Parkinson's Disease. I now had a significant tremor on my right side with some minor slowing, some occasional freezing and some very minor speech problems. Being now 31, the neurologist was reluctant to diagnose me and said it was probably PTSD and to see a psychologist for stress. I thought GREAT! But alarm bells should have been ringing because he said he was making appointments for me to see the head of Neurology at Westmead Hospital - a specialist in movement disorders. He told me he would make all the arrangements and I would just need to go when they told me to go.
I did and was told I had 'parkinsonism' at the age now of 32. I had extensive testing done that revealed I also have a carvernoma in my brain (not related), an autoimmune thyroid disease (not related) and there was no other cause that they could identify causing the parkinsonism, so I was diagnosed with Young Onset Parkinson's Disease and put on madopar. My neurologist has told me I have a 1 in a million chance of it being 'Dopa-Responsive Dystonia' but not to get my hopes up. So here I am, 32 with PD. I have been on meds now for 5 months with positive results. My future is as unknown as everyones here but I am going to do all I can to fight it!
My children are 15, 13, 10 and 3. They are the reason I will fight and I won't let this win. I am training to run in 'City to Surf' in Sydney to raise money for PD this year. Wish me luck because it is really hard to run when your steps are so damn small...
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