Telephone consultation with Prof.

Yesterday I phoned Prof. Ahmet at Izmir Teaching Hospital to report back on his prescribed drug regime. C and I talked about what I would say and agreed the baclofen isn't working - indeed, he's had some nasty falls since starting it. Prof. said we should taper it off over next six days: down to two doses per day starting yesterday, then 1 dose from Sunday ending on Tuesday then he'll not take it anymore. I am to phone again in two weeks - I can't quite believe this is happening. Free consultations with Prof. of Neurology on his mobile. And this morning I have just got C up to find bed dry for first time in a month. Feels like Christmas and is probably just a one-off, but a real treat. Now Heady I can do laundry from upstairs beds (still only partially done despite your challenge) instead of having daily laundry mountain down here. Am also hoping C's mobility will improve again once he is baclofen free. And first guest of 2015 emailed a couple of days ago and lands on 24th so hey ho here we go.

[easterncedar]

Getting advice you feel good about makes all the difference, doesn't it? Sorry the baclofen didn't help your guy either. The pt mine is getting now is definitely helping. He's more alert afterwards, and he has even started to do some of the seated exercises on his own without any nagging from me. Maybe it's just a plateau we would have come to anyway, but I'm going to make the most of it. Enjoy the orange blossoms. Love and peace, ec

[Hidden in reply to easterncedar]

Thanks easterncedar I know you are right about exercise but C refuses to do it. So what to do? Plod on of course.

[Hidden]

My father was not given baclofen until almost the end, by this time he had been bed ridden for six years. I can well imagine the increase in falls of one is on that drug and still mobile. I am suprised that your neurologist would advise it at that stage. In any case, my father's doctor did not have s clue either and gave my father an overdose and sent him into s coma !!baclofen has a long half life and unless the right hour gap between each dose got each 24 hours, there will be problems. Ask your doctor about Rotigotene. That was helpful for my dad but as I have said, he was already bed ridden and not diagnosed with PSP until 6 months before he died. Maybe Rotigotene would not be suitable for someone who is still mobile. It is such a terrible disease ,we just have to try this and that as we go through the various stages. I think medical cannabis is worth a try too. I don't know where you are but here in the UK it seems impossible to get a trial. It has been available in the USA for 20 years.

[Hidden]

In defense of the Prof he prescribed tiny doses (quarter of 10mg tablet three times per day) in the hope of slowly increasing dosage as body/brain accepted the baclofen. C had previously tried baclofen in much larger dose with catastrophic results so that I stopped it after only four days. I agree with you on medical marijuana but we live in Turkey where cannabis is only viewed as a highly illegal recreational drug. After first baclofen fail last November C's balance improved rapidly once it was stopped. I am hoping we will have similar experience this time around.