Hi and welcome to Mr Grumpy and Wall… and !!!
It certainly takes a while to get your head around having PPMS… but believe it or not it does get easier. I think you are both going through the worst stage actually (well Wall waiting for dx is the worst stage) but also trying to get all the ‘sorting out’ done!
DLA is a tricky benefit as it depends very much on how the questions are answered and how much info you provide (the more the better!). The best advice I can offer is joining a website called ‘Benefits and Work’ which costs around £20 for annual membership but is worth every penny. They have step-by-step guides to applying for all benefits and appeals processes written by lawyers who are benefit experts.
Telling the truth of course should be enough… but it’s not. It’s the way you tell the truth that matters. Glad you both have help with it and best of luck.
I don’t know much about Access to Work. As this is a very small group on this board (did you know only about 10% of people with MS have PPMS?) I think it would be worth you posting on Everyday Living for advice… much much bigger group.
My top tip with dealing with all this… symptoms, benefits, mental anguish () is to take it one day at a time. Remember, just like the other types of MS, PPMS is different for everyone. Just because another person with PPMS has a particular symptom or disability doesn’t mean that you will get it too. We all have our own bespoke version! We have one user on here who was dx over 40 years ago and is still doing well and living independently, and another user who was dx 22 years ago and only recently gave up work due to redundancy (nothing to do with her PPMS).
Also at this time there is more research going into PPMS than at any other time in history! There is real hope of new treatments coming along to slow or halt the progression and further along the line even a possibility of a cure.
This is a great place to be with people who know exactly what you’re going through for help, support and friendship. Sometimes ONLY another PPMSer will understand what you’re going through.
Take care and look forward to seeing you both on here again (ask questions about absolutely anything!).