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Last reviewed July 2024

Are you:

  • reviewing your current home and thinking about making adaptions?
  • moving away from home for the first time?
  • looking for a new place to live?

We hope this checklist of things to think about and how to get the support you need will be useful.

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If you are looking for new options or have questions on these topics, our information and links to organisations may be useful.

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Louise talks about being a Mum who has SMA:


Recorded February 2023

 

Julian and Molly chat to Becca about having SMA and becoming a parent:


 Recorded November 2020

 

Image shows an adult man who has SMA sitting in his wheelchair, holding his baby son. They're looking at each other and smiling.

Image shows a mother who has SMA sitting in her wheelchair, with her baby boy sitting on her lap.

 

Josh and Molly also each share their experiences of having SMA and becoming a parent in our Community Voices.

 

Our What’s App Groups and Online groups and forums can provide peer support, tips and ideas for parents who have SMA.

Young Minds – offer online information and resources for parents. They also have a phone helpline for parents worried about a child or young person under 25 years.

Relate – support people to make the most of family relationships. They offer help for people of all ages, backgrounds, sexual orientations and gender identities to strengthen their relationships. They also offer other information and offer family counselling.

Toby (SMA UK Trustee) and Andi (from TreatSMA) talk about ‘Hitting their Forties’ . They look back on getting kicked out of university as well as reflecting on mental health, treatment, work, healthcare, support and more…

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You might like to join our Adults 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 podcasts.

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In this podcast Luis chats to Becca about life with SMA:

Recorded August 2022

Assistance dogs are popular with many adults and families 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.

As with many dogs, it will also provide loyal and unconditional friendship and company.

Dogs are also a great ice breaker and way of meeting and talking to people when you are 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 are 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. They can also give information and advice about the responsibilities of dog owners:


Animal Companions

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

Sunny Every DayImage shows a man sitting in his wheelchair, with his golden retriever next to him.

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.

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Image shows an adult woman, who has SMA, sitting in her wheelchair. She is holding the paw of her black goldendoodle dog.Marni – with Dylan the Goldendoodle & Buttercup the Chihuahua

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

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Image shows an adult man in a specialised beach wheelchair, with his brown sitting on his lap.Ross & Ralph

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

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