On Tuesday we did the marathon trip to Izmir and back in a day for our appointment with the Head of Neurology at Izmir University Teaching Hospital. I got lost after taking wrong turn off motorway on outskirts of Izmir so in total drove for 9 hours (5 going and 4 coming back), hence the marathon. But this is a huge country and basically that is not a marathon in Turkish terms and, as one of my friends says I am a 'heroic' driver. So we were ushered into the Prof's office, he's called Ahmet, and he took one look at Chris , picked up the phone and called his wife in to join us and have a look at the 'text book PSP case' that was in his office. They were both lovely people and I asked them what they talked about over dinner! They gave C a really good examination and prescribed a new drug regime. Botox isn't happening, which confirmed what I thought as, whilst there are lots of examples of it being used for PSP patients with eyelids that won't open or close or a hand that is permanently fixed in 'fist mode' C's whole left arm and leg are now rigid which seems like far too big an area to tackle with botox. Mrs Ahmet did say they may try botox in left foot if new regime doesn't make a difference. Interestingly he is now on baclofen three times a day but only a quarter pill (thank god I own a pill splitter). We tried baclofen last October but our neurologist here prescribed one whole 10mg pill after breakfast and within four days C's legs were like jelly and he could barely stand so he stopped taking it. Prof. Ahmet said that whilst they rarely see anyone with PSP they work a lot with spastic children and have good results with baclofen but the dose needs to be tiny to start with then is gradually built up. Plus, and I also thoroughly agreed with this, Ahmet kept stressing the importance of exercise. He said that he was absolutely sure that exercise will ensure mobility is maintained. So we left with new prescription and drug schedule written by Prof. and bobbed into IKEA next door for meal in cafe following which I put C in car while I ran around adjoining shopping mall acquiring books in English and coffee beans. Plus bought a takeaway coffee to sip as I drove home thinking it would keep me alert, which it did, but also meant I was wide awake till 1am! I am to phone Ahmet in two weeks to report and then he may tweak dosages and arrange another appointment. So nice to find doctors who are down to earth and whose pronouncements agree with basic principles of common sense. And am now trying a new approach to get C to exercise. Found latest Donna Leon novel in my shopping mall dash so he now gets a chapter read aloud to him after he has exercised. As I write this he is sitting in armchair on other side of coffee table from me exercising arms and legs - it will be Donna Leon as soon as I press 'Post'.
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