Author: Daryl

This Story of the Month has been written by Ben, a 14 year old boy with Quadriplegic Cerebral Palsy from Malvern in Worcestershire. He has recently started his own YouTube channel and would love to be a big YouTube star.

I enjoy four-a-side wheelchair football, which I play once a month at Villa Park in Birmingham. I really love making content for my YouTube channel, which I have started recently with my tutor Sarah. I like my food – particularly cakes and chocolate – and I love going out with my family, seeing my Nan and generally being sociable.

I was first diagnosed with Quadriplegic Cerebral Palsy when I was a month old. At first, the doctors thought I wouldn’t ever be able to feed myself or even talk. I surprised everyone when I started to talk! My mum, dad and I have worked really hard to get me to where I am today. I’m semi-independent and can do lots of things that other teenagers do such as going shopping, playing video games, some reading and I am even writing my own book!

What inspired you to create your own YouTube channel?

I wanted to get my message out there. Nothing is impossible if you try hard enough. I record quality content for my channel around every two weeks about various subjects that are important to me. I want people to know that if I can do it, so can they. I have overcome so many obstacles in my life: people thought I wouldn’t be able to talk, but now I talk to give a positive message to others. I watched other YouTubers talking about the things that they’re passionate about and I wanted to do the same. I’ve got nearly 100 subscribers now but my goal is to get 10,000 subscribers by the end of 2019. I think I can do it! I’d love readers to check out my channel and subscribe: just search Ben Gannon (not the cyclist!).

What’s the biggest challenge you’ve faced as someone with Cerebral Palsy?

Sometimes I can feel quite down. I can get frustrated at school if I have a hard day and everything can feel like a roller coaster. I have felt really good lately as my YouTube channel is going well and I’m enjoying making content. My cerebral palsy affects my arms and legs so I have help to do lots of tasks like getting dressed and going to bed. But I have some really good equipment such as my chair and my lift – which I have just reviewed on my latest YouTube video! – And this means I can do a lot more for myself, which is great.

What do you love most about Ben? (for Mum)

Ben always puts 100 % in to everything he does. He doesn’t moan (only when the chocolate supplies are low) but he is genuinely a gorgeous lad. Ben loves his family and he is the most relaxed and happiest when surrounded by familiar people. Ben loves a bit of banter and will take the mick out of me regularly. He is always willing to tell people my embarrassing moments, that’s not what I love about him, but he is very funny. The characters he has used in his book shows his sense of humour, such as the seagull that tweets on twitter all day. He is such a role model for other kids. I love that he his enjoying the YouTube channel, we are keen for him to have an impact of others and have something of meaning to do with his life.

Do you have any YouTube idols that you look up to?

I love watching Jacksepticeye videos because he promotes a positive mental attitude and reviews video games – both of which are close to my heart! He also has 20 million subscribers, which is something I aspire to have! I also like PewDiePie, who makes really funny videos and has even more subscribers – he has 65 million! Sumara Redway is another favourite because she makes really cool, genuine gaming videos. I watch a lot of Typical Gamer’s videos too as he is funny and makes good Fortnite videos.

Can you tell us about 3 things that make you smile? Or the things you’re most grateful for?

I am grateful for life and because I am happy. Making videos makes me happy. I have fun doing it and love to share my message with other people. I love to read the comments people make on my videos and to engage with viewers. People have left really genuine comments and have said that my videos make them smile, which really makes me smile!

Is there anything else you’d like to share?

I decided in December that I wanted to learn to read better mainly because I wanted to text my friends and read my messages from them. I’d been covering up the fact that my reading wasn’t great for quite a number of years and had been guessing words and lip reading instead of reading the actual words. I decided to get a tutor and immediately I made loads of progress. We were looking for books for me but realised quite quickly that there was nothing suitable for people in my age group who are just starting to learn to read. I know I’m not the only teenager who is in this position! I am 14 and not really interested in Biff and Chip… so I decided, if I couldn’t find a suitable book, I would write my own! I worked with my tutor to develop a character called Bob The Fish. He is quite complicated: he’s jealous, funny, and materialistic and has some very interesting relationships with his friends!

I have written one short book about Bob the Fish and am now on my. I’ve been talking about him in my videos and people have been really interested in hearing more about the book! Who knows: I could be the next Roald Dahl!

Help Ben chase his dreams by subscribing to his YouTube channel where you can also learn more about him.

Read more of our story’s of the month on Disabled Living’s blog.

Ian is an avid football supporter but is very visually impaired due to mitochondrial dysfunction. This means his sight is only good for short range and large, high-contrast, images. Although he visits Anfield to watch Liverpool play, he is unable to see the play. He simply listens to the radio commentary and soaks up the atmosphere from the touch line.

He has always wanted to watch the action but he simply cannot see further than a few inches!

Rupert Powell, a volunteer with Remap York, was given the challenge. His solution uses a virtual reality headset, a video display screen, a camera with a powerful motorised zoom lens and some clever computer processing to bring the action up close.

Here’s how it works. The camera is mounted on the headset itself so wherever Ian looks he gets a high-contrast image on the screen right in front of his eyes. He can zoom in if required and the images can be further enhanced by the computer. Ian uses a wireless Play-station game controller to control zoom and focus, as well as contrast/still-frame/negative/Edge detection more.

So now Ian can watch the football match, rather than simply listen to a radio commentary, and absorb the atmosphere. He said he finds it easy to use and enables him to see the play over 2/3rds of the field. Something he has NEVER been able to do before!

Ian also uses the device for everyday activities such as shopping. He can locate shops and no longer has to ask other shoppers where certain products are on the shelf – he can now easily scan the shelf from his wheelchair and see the products he is looking for.

The helping handle

Bob Crump is paraplegic following a car accident, but this hasn’t put him off his hobby of off-road driving. He has a hand-controlled Range Rover but was experiencing difficulty getting from his wheelchair up into the car’s driving seat unassisted, due to declining upper body strength.

Remap volunteer David Tappin came up with a solution for him. This is a simple, lightweight frame which clips onto the vehicle’s door hinges to provide a strong but stable handle. Bob can fit it himself, then lean on it to lift himself into the driving seat. There was nothing strong enough on the market to meet this need.

Bob took the time to thank Remap afterwards:

The handle David Tappin made allowed me to not only continue my off road driving but also enabled me to get out much more for general day to day activities, which I had started to avoid, therefore improving my quality of life.

I can’t put into words how grateful I am to Remap and especially Mr Tappin who generously gave so much of his time and expertise.

Other recent projects include the adaptation of a rollator for an amputee, some fold down steps for a child with dwarfism and a special wheeled frame that fixes to an ordinary chair which allows it to be used as a wheelchair on board a narrowboat.

A more unusual request came from the Parochial Church Council of St. Peter’s Church, Wootton Wawen, which is the oldest church in Warwickshire. Here parishioners wanted a handrail as the heavy door to the church opens onto steep steps. But there was a big catch: no part of the church or doors could be modified in any way, and it was forbidden to drill holes into anything! Whatever was supplied had to be quick and easy to install and remove, and, above all, had to be really stable and secure, with no possibility of coming loose and causing an accident.

Once again Remap supplied a solution in the form of a removable handrail which simply clips tightly onto the door when required but can be removed afterwards without having marked the door.

What can Remap do for you?

Do you need a piece of equipment that you just can’t find on the market? Or perhaps you have an item that isn’t quite suitable and needs to be modified just for you? Everything supplied by Remap is free of charge and designed individually for each person. Give them a try!

Remap has a network of over 70 groups across England and Wales, so there is probably help near you. For more information, visit the Remap website at or phone the national office on 01732 760209.

Remap is a charity that helps disabled people achieve greater independence and quality of life. It has a network of skilled volunteers who design and make bespoke equipment for individuals and provide this free of charge. So in any situation where you can’t find the right gadget, contact Remap! Here are a couple of examples of recent projects.

Eilian needs to use a three-wheeled rollator to get out and about. Having an amputation however, creates an extra challenge, as he can’t safely use the rollator with one hand.

Remap volunteer Martin Rees modified the rollator for Eilian. First the brakes were modified so they could be operated from one hand. Then a cup-type receptacle was made to accept his residual limb. This was made from 3D printed plastic parts and a metal bracket that fits onto the rollator. The finished cup was lined with felt to make it comfy.

Jan Costa, the Occupational Therapist who referred the case says:

I have had previous experience working with Remap and although I knew what I wanted, it was not commercially available.  The Remap volunteer converted my concept and idea into a fully functional design and produced the item. The provision of the adapted braking system and single handed propulsion enabled the patient to mobilise safely with a three wheeled walker and reduces the risk of falls.

We occasionally have difficult issues like this, when one off items are the solution. Remap have helped on more than one occasion. My advice is that if you know what you want but cannot source it contact Remap. They can advise you and can also design solutions just for your patient. Give them a ring!

A very different request came from the Parochial Church Council of St. Peter’s Church, Wootton Wawen – the oldest church in Warwickshire.

The church has large inward-opening oak doors, which lead directly onto two large descending stone steps. But there is no handrail. The congregation includes many elderly people – could Remap supply some device or other to make it easier to negotiate the steps?

Some sort of handrail was the only feasible solution. But there was a big catch: no part of the church or doors could be modified in any way, and it was forbidden to drill holes into anything! Whatever was supplied had to be quick and easy to install and remove, and, above all, had to be really stable and secure, with no possibility of coming loose and causing an accident.

Remap volunteer Gary made a handrail built into a collapsible A-frame. Before the start of each service, the doors are opened and the handrail fitted. The congregation then enters the church with more confidence because of the handrail. After the service the device is removed and stored inside the church.

For over 50 years, Remap has helped thousands of disabled people to live more independently. It has a network of over 70 groups across England and Wales, so there is probably help near you. For more information, visit the Remap website or phone the national office on 01732 760209.

This post has been written by Martin Block from Able Rise for Disabled Living.

Assisting your senior loved one from afar as as long-distance caregivers can feel like an uphill battle, but there is help. Employing technology and services makes it easier to meet the needs of an ageing parent.  Here is some great advice to bring you peace of mind.

First, gather your tribe

Even with all the technology and services available to help long-distance caregivers, it’s still best to have at least one person you know and trust that you can call on to help your senior loved one when needed.  Work with friends, family members, physicians, or the senior’s neighbours to establish a supportive network. This is an important step to take first so that everyone on your “team” is aware of any outside services that are brought in.

This is also a good time to help your senior loved one connect with people they may have lost touch with or even become estranged from, whether due to a long-distance move, a prior substance abuse issue that caused emotional trauma, or an argument that got out of hand and was never resolved. Your loved one will need all the support they can get, and re-establishing bonds will help prevent them from becoming isolated, especially if they live alone.  If you encounter someone reluctant to take part in your senior’s care plan — or even their life — try your best to encourage them to try to make amends, or at least hear out your senior loved one.

Video monitoring

According to some experts, technological improvements and lowered costs make video monitoring a viable option. This is a great option for long-distance caregivers. Video cameras are typically small, and installation is easy.  Capabilities include options such as wide-angle views, night vision, high definition video, sound and motion sensitivity, and two-way audio.  “Nest Cam” and “Simplicam” are two of the products you can try.

Sensor monitoring

Sensor monitoring allows your loved one more privacy.  Wireless sensors are installed in the home to detect unusual activity. You can receive notifications via email, phone or text. “Silver Mother” offers small sensors that monitor items such as pillboxes, television sets, the refrigerator door, and doors to the home.

Sites matching onsite care

Another useful tool are websites that match caregivers with patient needs. These sites allow you to request what needs are to be met and can get help on-demand. Cera, a London-based provider, has been likened to Uber but for senior care. Similarly, apps such as “Care” are set up for you to select caregivers, who are vetted before they are available for selection.  You set up a profile, correspond with those who could be a good fit, and choose your caregiver. Once hired, caregivers are paid through a payroll management system.

Support apps

Your network of care should remain connected at all times. That’s where apps like Jointly come into play. CarersUK explains that this simple phone-based program can organise notes between carers and ensure everyone has access to task lists and a communal calendar.

Senior move managers

Consider looking into a senior move manager if your loved one needs to move and/or downsize. These specialists help navigate every aspect of moving and downsizing, including decluttering, hiring movers, donating items, disposal, and even sending items to you and other family members who live far away. They do the packing and unpacking and can set up utilities and cable television.

Downsizing can be stressful for seniors, and stressful for those trying to help them through it. Here are some great tips from experts:

• Discuss details with your parent, such as what will distributed to family members, what will be given away to charity, and what items will be sold.
• Facilitate sales. If your parent wants to sell items through an online service, offer to help. This is particularly important if your parent isn’t internet savvy. You can research what things are worth and do the listings yourself. There are “valet” services that can sell items on behalf of others as well, which take a percentage of sales.  You ship your item to the valet and then receive payment upon the successful sale. If sales need to close in-person, some police departments now offer parking lot exchanges for your safety.

Services and apps that help you both

If you’re feeling overwhelmed by assisting your ageing parent across the miles, there is help. Use technology and services to support your parent from afar. Even if you can’t be there for everything in person, you will have peace of mind knowing your loved one’s needs are met.