I have been avidly reading this site since my husband was diagnosed in January and feel that I know many of you. Of particular interest is Eastern Cedar as we live in the neighboring state of New Hampshire, and I just love Georgepa's descriptions of the English countryside. After many years of visiting my parents in Sussex or Oxford every spring this is my second year without needing to go. We have gone from winter to summer overnight here, so the awakening of one bulb, blossom or tree that lasts months in the UK is taking 2 weeks!
I have such admiration for you all - whether suffering this disease or as caters. You all seem to have such endless patience, and I hope to emulate you as the frustrations mount. All of you have provided such valuable information, and helped us to prepare for what lies down the road.
Very soon after diagnosis he took the driving test, and failed of course. He sat down with a former colleague and spelled out what he wouldn't tolerate as far as intervention when he becomes incapacitated. We have put a handicapped shower in a downstairs room and it is ready to be his bedroom when stairs are no longer possible. The U-step is also ready for days when he feels the need for that.
He started on a Paleo diet after reading Dr Wahl's book about putting her MS into remission - seemingly permanent. It is hard to know if anything helps, because we have no idea what the progression would be without it.
The most significant benefit has come from the prism glasses. It was so frustrating for him not being able to read for most of the day.
We are lucky to be in a small college town with a major medical centre, so have access to an excellent neurologist and neuro ophthalmologist, as well as having many PT and OT programs and an active Aging Resource Center. He is still able to take the bus on occasion.
We are planning to make a trip to New York to see a doctor who infuses Phosphatyl Choline. Has anyone heard of this or have any opinion? It was suggested by a dietician friend as being something that will heal cells, and she put us in touch with the researcher in the field. They have had some success with some conditions apparently. A biologist friend and professor is skeptical, as is our neurologist. I suspect we are grasping at straws, but if J thinks it is worth pursuing I will be the chauffeur!