ALS for Dummies

[Doug Carpenter]

As a result of an article in today’s Guardian about its author

https://www.theguardian.com/music/2020/feb/14/pone-paralysed-producer-making-music-with-his-eyes

-I found this:

https://alsfordummies.com

I’ve not read it yet.

Doug

[Shaun]

Hello Doug
Thanks for posting the link, some interesting ideas and blunt personal points from him. Perhaps more suited for those of us at the beginning of this journey, as many of the senior members* of this forum have the T-shirt, so to speak.
My personal take on it was, be positive, prepare and plan, make sure all involved know your plan, don't let this disease own you, you own the disease. I know that is easy for me to say right now, but I know I have some time on my side and I going to try and make the best use of it.

Interesting that in France they have the same financial and information issues we have here.
Perhaps we need a sexier name , MND , ALS isn't that catchy.

(*Senior members - said with respect and admiration)

S

[Ellie]

"You own the disease"

I couldn't agree more, Shaun.

Because keeping positive is SO important, taking ownership and control of our MND is empowering - and that includes being confident enough to say YES or NO at all stages, be it to equipment, medical intervention, medication or even visitors etc. etc..

Knowing your body is important too, and this takes a bit of time, but if you can recognise subtle changes in your body you can be more proactive, i.e. more control.

I know I need to be in charge of and (politely) run the show re my meds, care plan etc. because it's damn hard being reliant on others for all my physical needs !!

Love Ellie.