Am starting at Ground Zero with significant other's CIDP diagnosis this week. Anything that you can offer by way of information and advice is appreciated.
He is 69, active, athletic, developed weakness in upper legs 3 or 4 months ago and cannot walk even one step unassisted by walker with locked knees. He falls and his knees are wearing out. He has about 30% left of his arm strength. His first IVinfusion will be given at home in a day or two. No idea what to expect. We are grateful to finally have a diagnosis and he is fortunate to live near Shands Medical Center at University of Florida where there are doctor's familiar with different neurological orders including CIDP and confirmed his with a spinal tap last week. It is daunting but putting a face on this has helped at least mentally. As caretaker I just want to do the right things but I need to know what they are. The doctor will guide me but nobody knows like the people in this forum about all the day to day issues we face. One thing I have learned already by reading in here and online is that every single patient and case is different. I am so appalled at how long some of you have had to wait to be diagnosed and feel fortunate our time was short although it felt like forever.
We are at this point hopeful and optimistic he will walk someday. And sleep.