It's been one year since being diagnosed with Parkinson's. Where has that year gone too? All in all it's been a good one. As it's been a while since my "coming out" post I thought this would be an ideal time for my next one. Which is long overdue!
My plan when diagnosed was to start to raise more awareness and funds for Parkinson's charities. However, I have been, unapologetically, taking some time out for me and of course, enjoying myself. The main thing is getting to know Parkinson's. There is so much information to absorb that it gets a little overwhelming at times. After all, this is something that will affect me for the rest of my life. So it doesn't get too much I'll only look at reputable websites and charities. And there's great support from other Parky people. I do try to stick with Parky's that also have young onset and are in the first 5years. Parkinson's affects everyone differently. It can be quite upsetting when hearing about people that are 20, 30 years into this. Like everything, the extreme side to the illness is distressing. The good side to it is that there are people who have had it for 20, 30 years that still live their life through the good and the bad days. So I'm just taking it a day at a time and still refusing to give in to it. I will get back to my original plan, as I don't want to sit back and do nothing. They say the first 5 years are the honeymoon period before Parky really starts to kick your ass. So there's no time to waste. Not that I'll be giving up after the 5years!
I have found a couple of things that have irritated me.
-Leaflets. These were sent to me a few days after my diagnoses. The picture on the front had two women with their backs to you. I automatically assumed that the dark haired lady represented me. Then I thought that it was the frail, grey haired lady that was representing Parkinson's. That's me! They went straight in the bin. Unread. At this point my emotions were still running high so I may have over reacted! It just bought it home that I'm in the minority. Or, as I like to look at it, unique. I'll take onboard the advice of the experts. When it comes down to it I'll do it my way. Maybe change the leaflets so they're more neutral. We're not all at retirement age when diagnosed.
- Prescription's. The important thing is that my meds are working. Never thought I'd be happy taking 4 tablets a day, every 4 hours from 8-8. I've always hated taking tablets. But they give me a better quality of life so not taking them is not an option for me. I have to have a monthly prescription due to the nature of the tablet. Don't want us bouncing off the walls on a dopamine high! And because I'm not exempt ( Parkinson's doesn't make the list) I have to pay for the meds. This even surprises the Pharmacy staff! That exemption list needs to be reviewed.
Like I said, the meds have been doing a great job so far. Occasionally a few symptoms may flare up. Tiredness is still present. I'm still flying full time (still my choice to be full time) so it may be a combination of both flying and Parkinson's. Plus the fact I'm not 20 anymore. No matter what my brain tells me! I make sure that I rest properly when I need it and I don't beat myself up if I have l lazy days. I've also noticed small involuntary movements. More like spasms. Which could be Dyskinesia. And Dystonia which is when muscles become stiff, painful and uncomfortable. Now, don't be alarmed! I haven't gone all Michael J Fox just yet. They are small spasms that only last a few minutes. Usually when I'm tired. Or it may be when I'm in between taking meds. A rush of dopamine that's finding out where to go after taking a tablet and too little just before you're due one The aching muscles I get are the same. Never constant. The funny thing with the Dystonia is with my right leg my toes curl under and my knee bends inwards when I bend down. It looks like I've wet myself. I'll leave you with that thought! This is something I'll have to discuss with my Neurologist. I'll be seeing a new one that specialises in Parkinson's. Although I have a 10month wait. Good job I only have to live with it!
On a more happier note. There have been a few times where I've felt like the old me. Pre Parkinson's. Each time music has been at the core of it. It's no secret that music is a big part of my life. Always has been. Our house would always have music blaring from most rooms. My escapism has always been live music. Just for those few hours I can be totally immersed in it and not think about anything else. I'm in my own little bubble. Absolute bliss. It's one of the few times when the symptoms seem to be calm or none existent. Perhaps there's something in that? The more moments I can have like that the better. Gotta keep on rockin! I love doing my own thing. Always enjoyed my own company as much as socialising! Went to Marrakesh and one of the Def Leppard concerts on my own. Hoping for another singleton holiday soon. Long may that continue!
So, I am now entering my second year. I've realised how lucky I am to have so much love and support. For which I am extremely thankful. I know it's not an easy thing to get your head round. Illness can make people feel uncomfortable. It can be so difficult to find the right words even with someone you know really well. Even saying it's name can be hard. It's like the Voldemort of illnesses. He that shall not be named! Don't be afraid or shy. Say it's name. It helps with acceptance. For me, Parkinson's is here to stay. It's not going anywhere. There's no escaping it. So please don't ever worry about asking questions and talking about it. You can't upset or offend me. Helping people to understand and be more knowledgeable can hopefully help to improve conditions for people with Parkinson's. More support will hopefully bring that all important cure even closer. And I promise not to make it dull or boring. There's always a place to laugh about it.
In the meantime,
Keep living. Keep loving and most of all............... keep rockin! xx
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