Muscular Dystrophy UK (MDUK) produced this neuromuscular care plan which is extremely useful way to keep all your infomration in one place. Fill it out and update regularly as your condition changes, and keep a copy in your emergency file so it is always to hand.
Muscular Dystrophy UK have published this great guide to support with home adaptions. We advise you to read it, identify what you need and what you are entitled to, and share it with your Occupational Therapist (OT).OT may not fully understand Myotonic Dystrophy, or how support needs may increase iover time, It is important to get this information to them and enable them to FUTURE-PROOF your home.
MDUK published guide to support with Personal Independence Payment (PIP) applications.
