Tearse Tearse

Suited and booted today with Parkinson's UK bandanas, but we didnt get going until late because my meds just weren't cooperating. Never mind, we got there in the end.

We've smashed our target even though its only day 2. Thank you so much to everyone who has donated!

OK, so we aren’t going to be running a marathon or abseiling off a building.

We’re just going to be strolling with our Westies, Heidi and Jak, throughout July for at least 25 minutes every day to try to raise a wee bit of money for Parkinson’s UK. Their Nurse Appeal aims to fund at least 25 Parkinson’s specialist nurses, which could give 7,500 more people access to the specialist care they need. Just £135 will fund a Parkinson’s nurse for one morning. And Parkinson’s UK will match anything raised up to £60,000.

Walking the dogs for 25 minutes… isn’t that a bit boring? Where’s the challenge? You’d be surprised.  

I want to take the opportunity to highlight a little known condition that can be a Parkinson’s symptom, or in some cases can be caused by Deep Brain Stimulation therapy (DBS) or by damage done to the brain during the DBS surgery. This condition is APRAXIA OF EYELID OPENING. 

Damage to the region of the brain which controls muscles governing the eyelids means that a person closes their eyes but is sometimes unable to reopen them. Ken had a stroke during his DBS surgery 13 years ago and this probably caused his apraxia. We first noticed it about a year after the surgery. It was very subtle at first but over time has become progressively worse. It can be triggered by anything that increases blinking such as bright light, windy weather, sweat running into his eyes. Its worse when he’s tired, passively sitting down or inactive. However an episode can happen even when he’s walking and moving. His eyes are more likely to remain open if he is focused on something, and when he is physically and mentally active. That is why table tennis is such a good activity for him. Sometimes he has good days where his eyes seem to respond quite well, but then apparently at random the eyes will suddenly refuse to open and they might remain closed for substantial periods of time. Every time he blinks he has no idea whether his eyes will open again.

 The only treatment is botox injections in one of the muscles of the eyelid. They weaken the muscle which governs eye closure, making it easier for the smaller, opposing muscle to force the eye open. However the injections are only effective for a short period of time – perhaps a week or so, if they work at all – and can only be administered every 10 – 12 weeks otherwise there is a danger of permanent damage. So the reality is that for extensive periods of time Ken is - to all intents and purposes - blind.  

So you see walking is a bit of a challenge.  

By the way, our older dog, Heidi, travels in style now. She will be in her buggy for some of the time, with Jak trotting along beside. She’s 15, and can’t walk for very long before she gets tired. If Heidi could speak I’m sure that she would sympathise with Ken. Heidi has cataracts but is not strong enough to have surgery, so she is losing her sight. But she clearly enjoys lording it in the buggy, so she still enjoys walkies. We’re aiming to explore as many accessible walks as we can throughout July. Any suggestions?

Walk number 1 is Wednesday 1st July. I’ll be keeping track with the Samsung Health App, and sharing some photos and videos on Facebook.  

To donate just follow this link

https://events.parkinsons.org.uk/fundraisers/tearsetearse