50 days from MSA dx and..
1. Lots of health professionals have no knowledge of MSA, and might confuse or mishear it as MS so do always refer to Multiple System Atrophy and ask them if they know what it is.
2. Voice Banking. Try to get this organised asap after dx BEFORE your voice deteriorates. It will be easier for you and the results better than if you wait until your voice becomes problematic. Remember Voice Banking is a precaution, you may never need it.
3. Professional counselling (e.g. just after dx) can be helpful so even if you don't like the idea or think it might not suit you I would say try it. At worst you have just wasted 1/2hr of your time chatting to someone.
4. Hospices are great. Get to know your local hospice and ask your consultant for an early referral if it isn't offered. Some will take self referrals for some things so checkout their website.
5. Whenever one of your professionals rings you up or speaks to you in person do not reply to their "How are you today?" with a short "OK" but tell them all the details of what has been going on even if it's not their field. e.g. tell the physiotherapist about your urinary problems. Chances are you could get a referral to another professional and this builds your Multi Disciplinery Team even before the NHS formalises it.
6. Keep asking the NHS people for things you want/need. This covers everything from the mundane glass of water or a meal when you have been in A&E for 8 hours to more serious stuff. The squeaky wheel gets the grease. Badger them (see username), politely of course.
7. MSA Trust is a HUGE resource. Do not be shy in using it. They will do (almost) anything for you. [I'm probably in trouble now !!??]
8. This forum is also a big resource. Scroll through old posts/replies and see what you can learn !
9. Meeting others with MSA and their carers or spouses is not a depressing experience but quite the opposite. Well worth going to your local meeting if you can.
10. NEVER ever refuse an offer of help, be it from a relative, friend or whoever. When you hear the inevitable "If there is anything I can do for you..." have your customised answer ready. "Thanks,Bob. Can you give me a lift to the library on Thursday at 10 am and pick me back up an hour later?"
How do I get either a firm diagnosis or rule out MSA?
Next steps: living will, DNR and options
Just want to say Hi.. 
Flying with walking poles 
Gastroparesis as part of MSA
