If you are looking for something new you may find something that will appeal in these pages. Read more… 

See here for more information

For more information on this, please see:

• Plane Travel
• A-Z of Other Transport 

on this page in the Adults Section.

Mia, Ellia and Sophie Talk about Fashion, Make-up and Confidence:

Recorded: August 2021

A daily chore you hate or something you love? There’s no end of advice out there on skin care, hair care, fashion, make-up, latest looks; you name it, someone’s on YouTube or a blog telling you what they think and giving you ideas to try. We’re not out to compete or tell you ‘don’t go there’; we want this section to have tips and advice from people who do like fashion and who aren’t going to let muscle weakness or wheelchairs get in the way. So, if you have found it challenging to find fashionable clothes or footwear that work for you, or struggled to put on make-up, please share your questions. And if you’ve found solutions that work for you, please share your tips, advice and photos.

Footwear

Parents and teenagers have recommended:

• Friendly Shoes
• BILLY Footwear:
  • click here for a UK supplier;
  • click here for the original US supplier.

If you are having difficulty keeping your feet warm, in November 2023 some people on our Families’ WhatsApp Network recommended looking at the shop at:

• Raynaudsdisease.com

You might like to join our Teenagers’ WhatsApp Group. You may also find other virtual groups and networks on Facebook, WhatsApp and Instagram. We have listed a number of these on our Online Communities page.

You can listen to, watch or read what young people, adults and others have to say in Community Voices as well as our Living With SMA podcast. Find out more.

A recent example:

SMA Life Through The Ages – Maxwell (August 2022)

For SMA Awareness Month, we released a 4-part special called ‘SMA Life Through The Ages’ where you can hear different perspectives from various age groups. Featured in part 3 is Maxwell:

You can keep up to date with developments in services and research, campaigns and surveys, social and fundraising events and other general information and news by signing up for our monthly E-news.

Assistance dogs are popular with many families and adults in the SMA Community. An assistance dog could help you with practical tasks such as:

• picking up dropped items like your mobile, or remote control
• opening and closing doors
• helping with dressing and undressing
• helping with physiotherapy routines
• pressing the button at a pedestrian crossing
• reaching up to shop counters.

This can mean that you’re less reliant on other people for some of your day-to-day activities.

If you’re in charge of your working dog’s care and training, it could also help you increase your confidence (though you may not need this!) and, as with many dogs, provide loyal and unconditional friendship and company. Dogs are also a great ice breaker and way of meeting and talking to people when you’re out and about. Registered assistance dogs should be allowed to go with their owner into many public places, such as shops, restaurants and to travel on public transport.

There is however a ‘but’, which is that an assistance dog is a serious commitment that needs a lot of thought and planning.

If you’re interested, there are several organisations that can give advice. Some train and provide their own dogs; others provide training for people who already have a pet dog. Each organisation has its own eligibility criteria, application process and training schemes and can give information and advice about the responsibilities of dog owners as well:

• Assistance Dogs UK
• Dog AID 
• Dogs for Good (formerly Dogs for the Disabled) 
• Support Dogs 

Animal Companions

You may decide that you don’t want an assistance dog, but a well trained family dog can be a great addition and companion:

• Sunny Every Day

In March 2018, Martyn and his fiancée, Kasia, got their dog Sunny – find out why they decided to go for it and what Sunny means to them.

Read more >

• Marni – with Dylan the Goldendoodle & Buttercup the Chihuahua

Marni, who has SMA Type 2, shares what Dylan and Buttercup mean to her.

Read more >

• Ross & Ralph

Ross, who has SMA Type 2, introduces his golden cockapoo called Ralph!

Read more >

See here for more information

If you’re a regular wheelchair user you’ll know that though there have been many improvements, many places that think they are accessible just aren’t! Knowing where to find an accessible loo, for example, can make a big difference to a day out. If you don’t use a wheelchair at home (and maybe don’t have your own) and you get tired when you’re out and about, speak to your physio or OT about if and when it might be helpful to start using one sometimes – perhaps for days out at big venues – and how to go about getting one.

Accessaloo App – uploaded and rated by users worldwide.

Changing Places toilets provide a height adjustable changing bench with hoist and plenty of space. Visit their website for more information and a map of where Changing Places can be found. 

The National Key Scheme for accessible toilets that can be found in shopping centres, cafes, department stores and in bus and train stations around the country. To unlock the toilets, you’ll need to buy a RADAR key.

ToiletMap – Great British Toilet Map gives opening hours and locations – use the filter to find accessible toilets.

For actual days out, these websites are full of tips and ideas:

AccessAble – access information for over 120,000 places of interest in the UK

Accessible Boating – charity offering day trips on an accessible boat.

CanalAbility – charity offering accessible canal boat day trips

Cinema Trips can be much cheaper with a CEA Card (Cinema Exhibitors’ Association Card). This works nationally entitling anyone age 8 years and over to one free ticket for a person accompanying them. To apply, your child will need to be receiving Disability Living Allowance (DLA), The card currently costs £6.00 a year.

Euan’s Guide – access reviews from disabled people and their friends and families. Covers tourism and entertainment venues as well as post offices, supermarkets and railway stations.

Kids Days Out –  child friendly activities across Britain and whether they are wheelchair accessible throughout.

National Trust Accessibility Guide.

Sandcastle Trust – offers bespoke family respite, wrap around fun family engagement activities and peer support to support families living with a rare genetic condition (based on their individual needs) from across the UK.

Seagull Trust (Scotland) – a charitable organisation, wholly run by unpaid volunteers, providing free barge trips for people with special needs. They have fully accessible boats suitable for wheelchairs.

The Rough Guide to Accessible Britain includes accessibility information, including disabled parking and reviews, hints and tips written by disabled visitors.