I do not think the new meds are holding at all. He is so rigid that he slides out of his chair continually - and getting him back in is difficult at best. I need a block on the bottom of the foot rest so his feed cannot slide off but if we put one on then the chair would not be able to be raised for him to get out so that would not work. We may have to consider getting a reclining wheel chair for him to sit in. But first I guess we will have to deal with the meds.
I spoke to the doctor today at the conference (our neurologist was the chief speaker) and told him about yesterday and he said to watch him over the weeked and call sharon (the nurse clinitian) on Monday if he was not any better. He does not seem to really realize what John goes through each day and how hard it is for him.
I enjoyed the conference. The doctor had lots of information on new areas of research that is being done into diagonsing and watching the progress of the disease. But nothing that will be even available for 5 - 10 more years. Nothing applicable for now.
The afternoon was a physiotherapist who talked about exercise and gave all sorts of exercises that can be done sitting down. I came how with a whole list of good ones for John - but he was way too sick to even talk to him about them today.
I am beginning to get very angry at the whole medical system - surely there is some way to supervise and get meds to work without having the patient go through all this agony!!! And surely there is some way to get a hospital bed and mattress when you need one without having to wait for weeks and weeks!!! (still no word on when they will be delivered) but he is developing a pressure sore on one hip so we need it urgently.And yes, I hve called to check on them.
TWO big thumbs down for today.
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