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Showing posts with label Brain Tumours. Show all posts
Showing posts with label Brain Tumours. Show all posts

Friday, December 6, 2024

Wheelchair Worries - My (in)Accessible Ramp

If you've read my book, you will know that I wasn't particularly complimentary following my initial interactions with the Social Services.

Alice phoned the Social Services and was told they wouldn’t look at doing the conversion because they needed to assess me in the already converted environment to see what needs are required to be catered for.

There was a major problem with this ridiculous rule. The Haywood couldn’t discharge me until they were happy I was going back to an environment that catered for my needs.

I simply don’t know what happened here, maybe there were some crossed wires.

The problem as far as I’m concerned was Social Services, though when I’ve used them since they’ve been great. Admittedly, they’ve only project-managed modifications, but things have gone incredibly smoothly. I think whoever was running things at this time is to blame.
Source: Brain Tumours, John Bonham and Fat Pigeons

Well, this is one of those occasions where they were very helpful. They arranged for the front part of my conversion (which had remained as a garage) to be converted into a utility room/porch/entrance thingy. This would have a raised floor so it would be on the same level as the bedroom. Originally, I used a portable metal ramp to get up to the bedroom from the garage. A permanent ramp would be built and fitted allowing me to get to the front door.

It looks great and it doesn't look out of place, it looks like the ramp has been here as long as the house and is an original fixture. I was very happy with it.

A few weeks later I was walking up the ramp from my Dad's car as I do most evenings, when I took a mis-step and reached for the bannister at the side to steady me. The fixture moved. It supported me, but I hadn't put much weight on it - between my legs and Dad's support, I didn't overly rely on it. On investigation it was discovered that the ramp wasn't attached to the drive, it was held in place simply because it was clipped in to the rest of the structure.

I informed the Social Services and the company in question returned to screw the ramp into the tarmac. I didn't understand how a company who specialise in installing disability ramps failed to remember this key component.

Over the next few years I had got used to buying cartons of salt to pour on the ramp when the weather was cold. The ramp is lackered, making it like a piece of shiny plastic, it was impossible
to scale on my own as the wheels would spin. When I was being pushed, the person pushing couldn't get any grip. It started to dawn on me that this precaution wasn't needed when using my old ramp - which is at my parents house now. It's metal but their are tracks and rivets meaning that it's not slippy. I was starting to realise that although my ramp looked great it had the functionality of an ice rink.

I then noticed another short coming of my ramp, I can't self propel up it. My wheelchair pulls involountary wheelies. I have to reverse up the ramp as this allows my weight - which is predominately resting against the backrest - to be at the front. This isn't a fault of the ramp, it's as long as the drive allows and the incline is what it is. I have a large bulky wheelchair with arms to stop me flopping out. I have a friend with a lighter, sportier chair and he gets up it without a problem, he can get on the ramp already doing a good speed so he has momentum. I can't do this, I have to go bit by bit, I push with my feet whilst turning the wheels.

What is somebody's fault is putting a pointless bit of metal at the foot of the ramp. It is riveted though, so there is a bit of grip... in the dry. When it rains this ramp is a hazard to anyone - disabled or not. Fortunately the bannisters either side have rivets, so I can grab these and pull myself up.

Well, now it's screwed down I can.

Wednesday, October 30, 2024

Wheelchair Worries *Puissalicon Edition - Another seven hours in the car

 

photo courtesy of
Brit Hotel privilège
After one of the most comfortable night's sleep I've had - the beds are extremely comfortable. And a pleasant breakfast, it was time to get back on the road again. It was just after 09:00am, we knew it was going to be a long drive, but we were un-aware at this point just how long it would take. Although it wasn't lost on me that the DS could just stop working at any moment, it has form for that.

Pretty soon we reached the first péage (pronounced pay-arge). Certain motorways in France are toll roads. Thinking about it this is probably why the roads are so empty, not because "France is big" as I idiotically said in a previous post.

The first thing I noticed was how big France was. I know that's quite an obvious comment. And how could I notice that just staring out of the window of a car? Well, it was 15:30 and the motorway was fairly empty. As the journey went on there were times when we couldn't see another car
Source: https://www.wheelchairworries.com/2024/10/wheelchair-worries-puissalicon-edition_20.html

The ticket machine was on the driver's side, but as we were in a British right hand drive car, it was up to me to reach out and grab the ticket. Something that we would get quite used to whilst driving to and from the villa. As this was the first occasion Dad lined up the car so that he was closer to the machine, which meant I was further away. And as weren't in a left hand drive car, it was upto the passenger - me. I took my seatbelt off, Dad pushed me towards the window and - fully expecting my dodgy grip to drop the ticket - I did it!

First stop, the toilets. I already knew there wasn't going to be a toilet seat in this tatty looking public bathroom - which I was quite glad about - providing there was a grab rail.

There was a disabled signpost pointing at the loos, so I was hopeful. Success! I got in and there was indeed a grab rail by the toilet. The room was quite large and in the far corner stood a solitary toilet. The room was in fairly good order. I still wouldn't like to touch anything, but I wouldn't have to rush to a Hospital to get a tetanus shot if I did. Maybe they've got a point with this no toilet seat idea...The grab rail was on the right side. My tremors are far worse on the right side and if I hold anything in my right hand I probably will shake. I gripped the grab rail very tight and my hand was trying desperately to waggle itself free. I wouldn't let go so my arm and my body started to shake. I looked across to the empty wall on the opposite side. There was a five metre space between the opposite wall and the front of this toilet bowl. Couldn't another toilet be put here? The grab rail would be on the left then, so somebody with issues on one side could use the other toilet?

I got back in the car, introduced Dad to the world of podcasting by putting on the The Rest Is Entertainment podcast and settled in for a long journey. Did you know that France has the tallest bridge in the world? Me neither! We didn't seem to be too high up, so I've double checked on Wikipedia.
As of October 2023, it is the tallest bridge in the world, having a structural height of 343 metres
Source:https://en.wikipedia.org/wiki/Millau_Viaduct

I glimpsed in the wing mirror to the pair of hangers on who'd latched onto us at Le Shuttle and I saw just a pair of feet on the dashboard. French drivers might have been alarmed to see the feet of the driver...

As we got over the bridge the view changed immediately. We seemed to have been transported into a western. The world was suddenly brownish, orange mountains. I was expecting to see bandits in between the rocks pointing rifles at us with questionable moustaches.

Along with the change of scenery, we now had the sunshine and not a cloud in the sky. The journey stayed like this for the remainder of the journey, gone were the motorways. It was single carriage roads all the way, but barely another car shared the roads with us. We got a phone call from the hangers on in the car behind.
"Are your ears popping?"
"I think so", I replied "I keep going deaf, and then I swallow and I can hear again".

Dad checked our elevation on a handy little app on the DS dashboard - this is probably the only time we'll need it, but DS have clearly got their priorities right. The car doesn't always start! But it gets the important things right. We were 3000km high, and it would continue rising to 3400km. It dropped quite significantly after that. After about another hour and a half we arrived.

Monday, June 10, 2024

I Writed A Book...

Back in 2007 I had a brain tumour, it was a Hemangioblastoma. It's a rare non cancerous tumour that occurs in about 2 to 3 people per million per year. It was supposed to be a fairly simple operation. Hemangioblastoma's are slow growing, and the tumour was 'away from all the major clockwork'.

Unfortunately MRI scans had failed to portray how “entangled” the tumour had become in hundreds of blood vessels.

Any of the blood vessels could be an essential supply to the brain stem. Each one the surgeon cut was likely to starve a part of the brain of oxygen, so he knew he was going to cause damage, but it was near-impossible to predict to what extent. I’m now forty one, I was twenty four when I had my brain tumour removed. I'm in a wheelchair, have Ataxia and have double vision and speech problems.

I've written a book; Brain Tumours, John Bonham and Fat PigeonsIt’s a cautionary tale, but also one of hope. I feel very fortunate to be able to share my story, and who knows it may help somebody going through similar times. It may help somebody identify the problem instead of making the same mistakes I did.

Plus, you want to know why fat pigeons are mentioned, don't you...

I did an interview on Vibe Radio breakfast show with Stu Haycock you can listen to it by clicking here

There is an article on the Brain Tumour Research Website - braintumourresearch.org

And an article in The Sentinel