Newly diagnosed

Hello,

I have been recently diagnosed with SCA2 and I just wondering if anyone has some tips to share for thouse off us just starting out with the diagnosis? So to speak.

[Litty]

Welcome

Stay as active for as long as you can.

We are all at different stages too and have different requirements.

My tips for in a car - I sleep a lot so a neck pillow is a must, sunglasses (I hate all bright lights and headlights) and blanket.

Eating out I have a bag containing thermal-lidded cup (for hot drinks), sport water.drinker, weighted cutlery, slopped plate and mat.

I have learnt that others react better the more disabled you are. I have a rollator for indoors but a wheelchair for days out.

My speech is dreadful and my alphabet chart is useful, My handwriting is not good so I try to make lists and I try to play Boggle.

My daughter loves taking me to concerts. You need to tell them you are in a chair and you get better parking and sometimes special seats.

I think that is most stuff x

[Jenandbeth in reply to Litty]

I have just read this and it's really helpful for me. As my daughter has learning disability as well she can't tell me what she needs and sometimes I'm slow on the uptake. This is really helpful x

[Litty in reply to Jenandbeth]

I am so pleased - I was worried it went on a bit x

[auntiesally]

hello, get yourself a pedal machine (its not a machine, I call it that) do it every day to keep your muscles going, invest in a wobble cushion (ebay) and do the exercises daily while you can, go to physio, a must, take up swimming, slow down, don,t rush things and breathe!

Take care x

[Hidden in reply to auntiesally]

I’m not sure what you mean by a pedal machine.

[auntiesally]

Get in touch with your doctor and ask to be reffered for a visit from an o.t. They will provide and fit grab rails for you in your a house a must for the shower, oh ask for a bath board, you may not need it yet, but am sorry to tell you that you may later on, you may need to explain the axtaxia to the o.t., if you need rails fitting to get out into the garden they will sort that out, I don't know where you live but I cannot praise the o.t.'s enough, they will guide you to what they can provide, it is all free- well it is where I live.

Good luck

[auntiesally]

Are you a Mary Poppin fan?

[Hidden in reply to auntiesally]

I saw it a few times as a kid.