Tag: Parkinsons

Beech band

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A bit like this..

I’m currently trying out a “beech band” for my Parkinsons. It looks a bit like a watch on my wrist, but it’s a blank black box with a USB port for charging and a switch on the side to turn it on. It vibrates with a rattling pulse every half second or so. It’s not medical but the pulse is meant to help with tremors and shaking. It’s supposed to train your brain somehow..

I was given it by a friend as her relative has got a new one. This loses charge and stops working sooner than I like but it does seem quite soothing, like a little whirring clock. It’s supposed to take about 6 weeks for the full effect. I’m willing to persevere.

Restless legs

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I’m sleep deprived again. I get into bed and my legs twitch and itch, feel sore and uncomfortable. After tossing and turning for a couple of hours came downstairs and slept in my armchair. It feels like having sheet and duvet resting on my legs makes it worse, but as it is cold in my bedroom I have to cover my legs up….

This seems to be happening more regularly and I decided to see what I could find out. I have Parkinsons disease and wondered if it was anything to do with it?

I’ve heard of restless legs syndrome so Googled it. Here’s the answer:

Restless Legs Syndrome (RLS), also known as Willis-Ekbom disease, is a neurological disorder causing an overwhelming, uncomfortable urge to move your legs, often with crawling, itching, or aching sensations, especially when resting in the evening or at night, with movement temporarily relieving the feelings. It’s a common, often unrecognised condition linked to dopamine issues in the brain, low iron, or other conditions, leading to sleep disturbances and daytime tiredness, but it is treatable through lifestyle changes or medication.

Reading that makes sense to me. I think I’ve realised this is the cause.

My friend painting.

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Quick sketch, crafty group, I wasn’t well so just did this. Pencil on cartridge paper. I think I still have my skill in drawing but Parkinsons makes it harder. I still hope to get better medication and reduce the dopamine breaking down in my brain. I love art and hate the way this disease is making me “stick”, or  shaking uncontrollably.

I’m trying hard to keep going, I do not enjoy how things are. But I realise my life is a lot better than some peoples lives. I’m lucky to live in a country with a universal health service. My eternal gratitude goes to the NHS., without which I would be stuffed!

Climbing

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Today I felt like I climbed a mountain…. I was rehearsing with the choir that is putting on a Christmas show tomorrow in the church. For weeks we have sung in the choir stalls near the altar, which was easy enough to move around. But last night they bought in a stage made of a metal framework and a flat top. It had a step up to it. That’s great but I struggled to climb up onto it. My Parkinsons makes me feel like I’m teetering forward and over balancing, which, added to vertigo, made me feel very unsafe.

The compromise was to sit or stand at the side of the stage, then walk up and round some steps behind the choir stalls to come out by the altar. Three steps, not as steep, but in almost complete darkness, which bought out my anxiety again. I hauled myself up the steps and dropped down them on the way back, making my knees hurt.

After eight or ten of these trips I was shattered. The show is the cast singing big songs interspersed with individual solos. It was very tiring. I felt like I’d climbed a mountain. So as a compromise during the performance I will mostly be sitting in the main church, just moving to the side of the stage for the ensemble songs… As I say I’m shattered!

Singing

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For health….

My Parkinsons is getting worse so I’m getting some therapy to help keep my voice strong and help my throat muscles.

I’ve joined a few choirs over the years and found out singing is great for lung health, breath control, and keeping your throat clear.

So this week I’m actually going to 4 rehearsals and will be singing with friends at a Christmas show on Friday. My main concern is my poor balance and weakening muscles. Shaking and stuttering isn’t helping either, I need to keep trying to improve. Maybe I need physiotherapy. Thanks for hearing my moaning!

Roadworks

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It took me half an hour to drive 500 yards and park near my house tonight.

I went out at 6pm and everything was fine. Three hours later I drove down my hill, only to find a toad closed sign about 200 yards from my house. At the bottom of the hill a large truck was parked across the junction preventing any entrance or exit from the street.

So I turned down a rutted unadopted road to get into the next street on along from mine. There was a road closed sign there too. But at least my house was only 50 yards away now.

I decided to ask one of the, workmen, but all he could say was sorry for the inconvenience. I walked a bit further and asked another workman. He, was much more sympathetic. If I went back and got my car he would move one of the cones that were in my way.

I finally managed to drive round, I couldn’t park directly in front of my house, but now I’m only about 10 yards away. If anyone moves I’ll try and shift my car later. The roadworks are going for another two days!

Table tennis

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I went back to the Parkinsons table tennis club this week after a few weeks off because of eye surgery.

I was pleased that I could just hit the ping pong balls but I was very unsteady on my feet. I was also cautious of bending forward. Time will tell whether I improve. I really think I need to discuss things with my Parkinsons nurse. I just want to be safe and careful.

Exercise is important, moving around, keeping active. If I don’t my muscles will atrophy. I think I need physiotherapy. Wish me luck. I’m so tired I’m going to get a nap.

Shopping trolley

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I just went shopping and they have changed the trolleys. They used to be shallow so that you didn’t reach down too far into them. The new ones are small, but deeper. If you want to get shopping out of it you have to reach down into it. Because I have Parkinsons I feel like I’m tipping forward and in danger of falling into the trolley.

If I use a basket I have to use a walking stick and it’s hard to put things into  the basket without finding somewhere to put the stick down. Sometimes I hang it off shelves. Also the weight of the basket seems more everytime I shop.

I know this is a first world dilemma and I should be grateful to have supermarkets. I just feel frustrated that even when disabled people are catered for the company can change it’s mind and make things worse. I just want people to recognise the problems we can face.

Catching up

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Youdraw drawing. I’m trying to catch up with things but the youdraw interview put me in a spin. So many old memories. Old friends, thinking about what I was doing and what I was capable of twenty or so years ago. And the frustration of no longer having those abilities.

I want to think about how I can get some of it back. I’m going to see if I can get better medication for Parkinsons. Does life have to be this hard? Mentally and physically I’m feeling my age.

Passion flower

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At a local garden centre I saw this lovely passion flower. Mine has died off so I will have to plant a new one.

My Parkinsons is playing up this weekend and I haven’t been out. All my limbs are shaking and aching and I’m having to hang on to my phone hard to stop it jiggling all over the place.

I would like to go out and do some gardening, but there have been loads of heavy showers and I don’t feel stable enough on my feet. Tomorrow a lot of things need doing and I hope I feel a bit better by then.