I wanted to let you know I rely on an electric wheelchair to get about. Many years ago I was very lucky to get an old Permobil wheelchair for free from a friend of a friend, and it was the best chair which I ever had! I loved the comfort, being able to move position while in my wheelchair and get out walking in “off terrain” roads. It was great to drive and it made me feel more independent. Unfortunately the chair was very old and parts of the chair were broken and extremely hard to source parts to fix it. So I set my sights on a new one… 

As I loved my chair so much I contacted the supplier, which was Permobil, and last April a representative came to my house with the newest model of the chair to try out.  The minute I started to drive it, it was like dream to drive and the seating was pretty good for me. I had made my mind up this was the chair for me. 

After receiving the quote for the chair, which was over £12,000, I decided to start the big challenge of raising the funds to get myself this chair. The first thing I did was set up a JustGiving page to see if I could get off to a start. I wrote a good story about myself, stating how important the new chair would make to my life. I shared this page with my friends on Facebook and asked them to share to as many places as they could. I was thrilled with how generous people were. I then started thinking about doing events and decided to hold a race night, which was a great night and a big success with a lot money raised. Very generously my sister did a sponsored bike ride in January 2018 and an old school friend of hers ran The Great Scottish Run in October 2017. They both did very well and raised a great amount for the pot.  

My mum and I then wrote to many trust organizations. Because I am an adult it was for very difficult to find trusts that could donate to an individual plus an adult. Some of the trusts which gave me grants were The Bruce Wake Foundation, The Act Foundation and The Elifar Foundation. Some of these trusts had application forms to fill in which was time consuming because they were very detailed and some just needed a letter. I got supportive letters from my therapist from Bobath and my GP which was very important as it showed the trusts how beneficial it would be to me. I also wrote a very detailed story about myself to put into the application. Some trusts I found on the internet and others were recommended to me.

Early in 2018 we got told the price of the chair have been dropped by £1,000 which was very good news meaning we were on track to get the money sooner. In total it took me roughly 9 months to get the grand total. I ordered the chair and within 4 weeks it arrived all the way from Sweeden! The service Permobil offer is great. The representative comes out to fit the chair to you and then is coming to visit me in a few weeks’ time to make any adjustments that need done. This has given me a chance to find out what needs to be altered. Apart from a few teething issues this chair is amazing!

My top tip: Fundraising for a wheelchair or any other piece of equipment can be a long process and it sometimes can be frustrating! So my advice is if you would like a new wheelchair or equipment make sure that you have plenty of time and you have patience. 

Good luck if you are planning on fundraising.

Calvert Trust Kielder

In this week’s blog, Bernie finds out about adventures and accommodation at Calvert Trust Kielder

Calvert Trust Kielder is a charity that provides outdoor adventure, to people with all abilities. There are accessible chalets that have suitable equipment for people who have additional needs, to ensure an enjoyable stay with friends and family. Kielder encourages young people and adults to achieve their full potential by getting involved in all outdoor adventure activities.

Their outdoor adventures include a wide range of activities including zip wire, high ropes course, climbing wall, archery, canoeing, kayaking, sailing and much more. All of the activities are accessible to people who have support needs, each of the activities is adapted with harnesses and specialised seating aids with straps, which helps people feel secure when taking part in the activity. There is something for everyone at Kielder and it is a great experience too.

There are different sizes of chalets available for people to stay in all with accessible equipment. Calvert Trust Kielder has an adult respite care service, allowing guests to go and have a break on their own. The charity has a team of carers who have over 25 years of experience and are fully trained, meaning that they can provide daily care to people who require assistance.  People who are interested in using the respite service would need to discuss their personal care plan with the care team at Kielder, before their stay.

In the main building and in addition to the respite wing, there are 12 bedrooms, a dining room, bar, lounge and a range of indoor activities. Self-catering is available in the chalets or guests are welcome to have breakfast, lunch and dinner, in the dining room. The site is fully accessible with respite and chalets adapted with equipment such as hoists, ceiling hoists, electric beds and much more.

Within Kielder Water & Forest Park, there are other attractions including Kielder Castle, where you can watch live footage of the rare ospreys and the Kielder Birds of Prey Centre where you can find out about all kinds of birds. The forest is great for wildlife spotting, fishing and cycling.

Kielder is based in Northumberland, England. It is only 7 miles from the Scottish border. This is a great opportunity for people who like going on adventure holidays. For information and to book contact the sales team on 01434 250232 or e-mail enquiries@calvert-kielder.com, For further information on accessible holidays at Kielder, check out their website: http://www.calvert-trust.org.uk/kielder/kielder

 

 

Wheelchair Dancing – A trip to Blackpool

This week Marion tells us about her experinces of wheelchair dancing

Hi it is Marion again! Recently just back from Blackpool with my Wheelchair Dancing team and thought I would tell you a bit about it!

I have been dancing in different teams on and off since the age of 10 I have been travelling to Blackpool every 2 years.  The years we were not in Blackpool we spent in Glasgow for the Wheelchair dancing festivals.

Sadly over the years the teams of dancers have become less and less. Due to not as many teams the Wheelchair Dancing Association has made the deicision to stop competing in England.   However the Scottish Wheelchair dancing association hope to continue to get more people involved and run competitions under new rules.

So we meet every second week to practise our dance routines, there are 7 of us in my team and what a laugh we have! We are called the All Stars Dance Team and are a C team meaning we are less able to move our chairs due to our disability and use power chairs.  We have to learn 3 to 4 dances, these include formation, set,   novelty   and couples dances.  It can be hard work remembering the moves especially on the run up to the competition!

In the past we have won many medals for our dancing there were gold, silver and bronze medals and plenty trophies.  This is an activity that I love as my friends are there too.  I’ve met many people over all my years at dancing.  

As this was the last of the English Championships they changed the way they usually do things.  This year was to be more of a fun day rather than a competition.  It seemed so wrong to me not be buying and taking any lovely   costumes with me which I have done for years.  Also felt strange not being judged and there was no couples section which made me sad as me and my dance partner have won many medals together.

We all set off on Friday morning and when we all arrived at the Hilton Hotel we met up and joined the other 1  dance team from Scotland and 1 team from Cornwall.  We had some dinner and got into the hall for one last practice

The next day was very relaxed compared to previous years.  We did our own dances which we had practised although one was missed out due to the floor area being too small for us all.  We also went into new dances with all the other competitors meaning we had to learn quick,  thankfully we all managed and was really good fun.  Later that night we all met for dinner and as if we didn’t dance enough there was a disco in the evening for us all to enjoy and let our hair down! 

Over the weekend I had a great time laughing and spending time with friends and fellow dancers.  I will really miss out trips to Blackpool and hope we can get the new Scottish association up and running quickly and make it more of a competition. . . . . . . who doesn’t like some friendly competition? 

 

If you’d like to find out more about getting started have a look at http://www.swda.org.uk/

As from 19 March 2018 the AAC law started, which means that every health board in Scotland must  provide AAC equipment and support to children and adults who require AAC to communicate.

There was a lot of work put into making AAC the law for many years, from speech therapists, people who use AAC, lawyers, people from different organizations and people from the Scottish Parliament to make this law happen. Also, as I am a AAC user, I was very involved in making AAC the law myself.

For many years I have been a part of a few AAC steering groups, spoke at a few conferences, met people from Scottish Parliament and a lot more. It was really important to me to be really involved in making this law happen, because I know how difficult having no voice and not be able to talk is. Although, I am one of lucky ones who got a Communication device and support no problem! But I know that there are people out there who had to fight for their Communication devices or AAC support and that’s not right at all. No one should have to fight for their own voice, but this new law should make things better for those who had to fight before.

Some people who are reading this may think oh ok no big deal!  But this law is a big deal for so many people in Scotland because AAC opens up a new world for so many people who can’t talk themselves.

A very good example of how AAC changes people’s lives for the better is Steven Hawking. Steven had MND from a very young age and due to having MND lost his voice and therefore he used a Communication device to communicate. And without AAC Steven wouldn’t have done half of the things that he did in his life. People see Steven as the greatest scientist ever but for someone like myself who uses AAC, Steve was someone who I looked up to and think well, he was disabled and used AAC like me and he did a lot of amazing things in his life, so there’s nothing stopping anyone from doing anything. So having this law in Scotland is really important to lots of people.

I have been using Communication devices from a young age, so if I needed a Communication device the education board always funded my Communication device without problems. But it was a big worry for me once I left school that I wouldn’t get any funding for any Communication devices in the future, but like I said before I am one of these lucky people who got funding and support from a speech therapist to get a new Communication device. But it always worries me that someday I won’t get any help or funding for any future Communication devices. But now, with this law in place I feel    like that I don’t need to worry any more that will I get funding.

Another part of the AAC law is the time factor and what I mean by that is, if someone loses their voice, they should get help from a speech therapist and any equipment that they need to communicate right away (like the next day) because no one must go for a long period of time without being able to speak, no way at all.

Also, making awareness of AAC is a big part of the law. Making awareness of AAC is really important in the new law too. Quite a lot of people out there don’t know what is AAC? Or what is a Communication device? Or how to talk to someone who uses a Communication device? And it is really a shame that a lot of people don’t know anything about AAC, because communication is the key to life! As I am someone who uses a Communication device I do get a lot of people who ask me what is that, meaning my Communication device, or people don’t know how to talk to me because I  use a Communication device, and that’s not right because everyone should feel comfortable to talk anyone that they want, so making awareness of AAC is really important to have in the new AAC law.

I hope having this new law will make Scotland a better place for people who use AAC because no one should have to fight for their own voice and everyone has the right to speak and to be heard.

To get more info about the AAC law