Helping my mum cope

Hi,

My name is Pippa and am living in France whilst my mum is based in Sydney Australia. She was diagnosed with cerebellar ataxia 18 months ago and her walking, speech, writing (non-existant now) and now breathing has all been effected. I really want to try and help support her through this journey but the lack of resources in Australia is insane! What do you suggest? How can I help her? What do you wish people had done for you?

I really appreciate any input.

[HarryB Administrator]

Hi Pippa

It must be difficult being so far away from your Mum, especially when she is going through what she is going through. I think one of the most important things you can do is to keep in regular contact with her and let her know you are there to listen. I think Skype or Facetime would be the easiest as you will be able to see each other and your Mum can speak to you without having to hold anything.

Ataxia UK has produced medical guidelines for health professionals for the management of the ataxias. Your Mum might find it helpful to give the link to these to her doctor. The link is ataxia.org.uk/Handlers/Down... and o summary of these aimed at GPs/primary care is ataxia.org.uk/Handlers/Down...

Best wishes

Harriet

[Hidden in reply to HarryB]

Thank Harriet! We are definitely in constant contact and will make sure I keep it up! Will take a look at the links you have shared.. thank you

[Litty]

Hello there

My sister (now quite poorly and in a home) lives in Melbourne and found resources out there terrible too so she helped someone and they set-up a group called SCARS.

scars.org.au/index.html

Any way hope this helps x

[Hidden in reply to Litty]

Thanks Litty.. have found that site and made contact thank you

[geneticallygeneric]

Be in regular contact with her (daily if you can). You sound like a great daughter.

[Hidden in reply to geneticallygeneric]

Thank you! My son (her grandson) and I do our daily FaceTime to make sure we are chatting regularly