On We Go

Sometimes I find it easy to think of stuff for the blog. It flows out of me and I can barely type fast enough. I tried dictating once, but the thoughts don’t flow so well. I hope I can continue to type as well as I do for some time. Well, forever really. Who wants to lose use of their hands? (Shudders.) Other times I have struggled, and this past fortnight is one of those times. Dear reader, I am determined to not let you down. I am therefore sitting and writing. Hopefully something will flow that’s worth reading.

I felt down after the last couple of posts. This year there appeared to be many people complaining that April is something to those of us with Parkinson’s, and nothing to everyone else. How true. We keep banging on about awareness, like it means something. I bumped into one of my children’s teachers recently. She beamed at me and said “Oh, how are you doing? You had that thing, didn’t you? Awful. What was it? MS?”

“No. I have Parkinson’s.”

“Oh, that’s right. You look great, so glad you’ve got over it. You’re all better now? Horrible thing.”

“Sadly not. It’s an incurable degenerative disease.” I swear to God, her friend took a step backwards. “Don’t worry,” I said, “it’s not contagious. Did you have a good afternoon?”

How many of us have had conversations like this? I’m betting we all have. That’s if we even tell people. They’re so scared of it, this frightening brain disease. You can feel the sympathy rolling off them in waves. I think that people don’t want to know. They want to hide. Wouldn’t you? Don’t we? How we wish we could do the same. 

image of feet wearing pale green roller skates.

Danger! Danger! She’s on wheels and is coming for you!

I’m sure we all recall only too easily the first time we heard the words “you have Parkinson’s.” I’m sure like me, there was confusion, disbelief.  We wondered what it was. I remember saying “isn’t that like, really bad?” I  knew it was nothing good.  This was confirmed less than 15 minutes later when a lady gazed sorrowfully into my eyes and gave the soothing advice,  “you will be limited.”

So began my crusade against negative assumptive language.  People that should know better telling us constantly how sick we are.  It’s bad enough that people perceive Parkinson’s as an affliction of the elderly, but for that myth to  be perpetuated and encouraged by our national charity in NZ is a downright disgrace.

When I look to other examples of national and international charities calling for help with this same disease I see messages of hope, of inspiration and positivity.  Turn to NZ and it’s like a cloud of doom.  No hope, never getting better, no way out.

We need messages of hope and inspiration. How are we’r supposed to find the strength to keep going without it? The daily routine is gruelling for many of us. It’s depressing to know there will never be an end to it, only more fighting. 

My day begins with a little yoga, a couple of rounds of physio (LSVT Big- sadly still only really available privately) exercises and I’m ready to get going. I began messing with my medication after a conversation with my neurologist about a month ago. I’m to take my meds at 4.5-hour intervals three times and day and a Sinemet in the evening to keep me going.

Keeping going is a bit of a laugh. I’m still taking five pills in the morning, then four at 11.30 am. Then another four at 3.30pm / 4.00 pm ish. I used to take them at 5.30 pm but it was too long and they were all wearing off. They take a while to kick in and I was limping again by 5.00 pm. It’s better now moving them back, but now I really need that last Sinemet. Without it I really struggle by around 09.00pm.

kitty imagining dopamine

Oh no – not this picture again….

The mornings are now awful. I don’t honestly know what it is that causes such a huge change, but I’ve noticed I’m noticeably   worse when I wake up on a morning now. My arms (alarmingly both, but still worse on the left) tremor slightly, I’m stiff and it’s hard to bend down. I force myself to put on my underwear unaided, reaching around my back is getting harder but I pretend it’s just the way I slept. I can step into my smalls without holding onto anything. My left side is a bit harder, and I need to lift my leg a bit manually sometimes, but I celebrate inwardly every time I succeed. It’s the little things.

I have joint pain in my left knee. Experience had taught me that my doctors will say “well you have Parkinson’s,” as though I should just shut up and expect to be in pain, have limited movement and face disability with open arms.

My youngest children are 12. Why shouldn’t I still race around with them? I love tramping  (walking) in the country. I love dancing like a mad woman to music.    I tried on my son’s roller skates at the weekend,  what a scream! 

I say we stick together regardless.  I’ll still be here here being crazy and living life to the full. Because this is it, folks.  We can only go forward,  not back. This is no rehearsal and we must make every day count.  Get up, keep moving and never give in.  You owe it to yourself,  you are worth it. You deserved to feel good and know there is hope for us all. Even if that hope comes in snippets of wretched exercise, it’s still good.  It still helps and we all need more feel good vibes.

Until next time, Kitty. 


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