Hi Noreen. I have been reading about your husband. How is he doing now? Is all very sad and my thoughts are with you both. My mum is 70 next year and has just been diagnosed with this. It's taken a long time (3 years) for diagnoses. She started swaying around 4 years ago, jump to today and she can't even walk with a frame. Her body goes into spasms, even freezes. Her right side is effected more, her arm and leg feeling dead. She has had a stair lift fitted and next few weeks a wet room too. She gets so angry and it's heart breaking to see her like this at all. We have been told of life expectancy at all. She has other conditions including conduction disease and needs something fitted. We know it's a rare condition and here in the UK the doctors are very vague. She recently had a DNA test done to determine if it's Genetic (she was adopted and didn't ever know her real parents) so awaiting results. Her speech is sometimes a little slurry but when she is tired. We don't know how long or how bad this gets but the more research I do, the more heart breaking the reality becomes. Thinking of you and your husband, hope you are ok x