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'.
Two professors for the price of one! - PSP Association
Two professors for the price of one!
9 hours! A marathon indeed. Was this a one off or are you expected to do this again? It will be interesting to see if the baclofen is effective. I hope it is. Enjoy the book.
I shall probably do it again but this is not a long journey here. You have to drive 3 hours to get anywhere as it really is a big country. I am also interested in whether or not the baclofen works. I shall keep you informed.
I SO AGREE WITH YOUR DR AHMET RE THE EXERCISING. I HAVE A PHYSIO WHO COMES THREE MORNINGS A WEEK AT 7,30 IN THE MORNING BUT I ALSO DO THE SAME EXERCISES ON MY OWN ON THE OTHER DAYS AND I AM SURE THAT HAS MADE A BIG DIFFERENCE , ALSO WHEN I AM SITTING IN MR RISING CHAIR I STRETCH NY LEGS OUT IN FRONT OF ME LOADS OF TIMES A DAY SO GOOD LUCK WITH THAT AND LET US KNOW HOW IT GOES ' LOVE SHARON XX
Sharon, If only Chris had your attitude. He just wants a magic pill to make it all right. He is now doing leg and arm raising, bending, stretching when sitting - but only when I remind him. So I now have yet another thing to do. Not to mention timed drug regime. We plod on.
JUST KEEP ON NAGGING HIM !!
So admire your courage and attitude. Keep it up. Interesting that a small dose of Baclofen was suggested I am sure some Doctors, Neurologists prescribe too heavy a dose of medicines. Good luck x
Thanks flicka though I don't feel courageous at all. Last night helping C up from dinner table he lost his footing and fell into me sending both of us hurtling to tiled floor, he landed on top of me! So today I am suffering with badly bruised right hip and knee and we are both moving very slowly and carefully. Guess it was a disaster waiting to happen and it did. PSP is truly awful.
Hi Pattz, is there any way you could get someone in, or go to, so your husband can have some help with his exercises. None of us is good at doing exercises on our own. I agree, there is no way you can take on that mantel, there is only so much nagging you can do, takes up far to much energy, that you need for other fights.
Why oh, why, is life such a HUGE struggle. Wouldn't it be lovely, if just once, things happened, without having to raise your voice, kick, scream, threaten or just plain bursting into tears. I am so tired of fighting, S thinks I love shouting and nagging, can't even be bothered to answer that anymore!
Hope these pills work!
Lots of love
Heady
Lovely to hear from you Heady. We simply can't afford to get anyone in to help so I am now nagging on a daily basis! No discernible change with new drug regime but it is early days yet. We plod on.
Oh well, better get the lyrica out and start your own gym sessions. Best of luck!!!! It will be worth the effort, if you can summon up the energy for the nagging!!!
Lots of love
Heady
Oh my, aren't we all in the same boat, all around the world. We have found a good physiotherapist who is trying hard to help me keep my sweetheart moving, and she is motivating me to keep on him, too. I do get tired of pushing all the time, though, as well as taking care of cars and the house and the bills and the food and the shopping and the driving and the appointments and the taxes and the planning and the ever-increasing loads of laundry. Going into the office is the least stressful part of the day. Oh well, I do love the guy. So on we go. It's good to have a place to vent. Love and thanks to all, Easterncedar.
I just read your post to my guy, pattz. He was very interested. I did mean to say earlier how impressed I am by your adventurous spirit and all that driving! I'm glad you found good and sensible advice. Rare everywhere. Do the Ahmets speak English? How do you generally manage? Thanks for posting. Ec
Thank you. I am adventurous and hope to stay that way. I speak fluent Turkish. When I first came to this country to teach Maths in an English-medium school in Istanbul at the age of 21, no-one spoke English outside our school. Also there were no packaged foods, no supermarkets, no ready-made clothes, it was just emerging from being a third world country to early stages of industrialization. In those days English wasn't taught in the Turkish school system kids learnt French or German as a second language. So I got a book and started listening, speaking French in the meantime, but after a year my Turkish got me by and it has continued to improve ever since. I do have an ear for language and was only 21 when I first came to Turkey so started to learn when I was young. Now I translate academic books, articles, essays from Turkish to English and continue to improve my language - though at that level it is hardly ever useful in the village where we live. The Professors spoke very little English so I translated as C doesn't have an ear for language and, whilst he understands some of what he hears, he can't really speak beyond greetings and ordering food and drink. My medical Turkish vocabulary is currently growing fast! There are thousands of British retirees living in southern Turkey now almost all of whom struggle mightily with the language as tourism means all the locals want to practice their English - which has been taught in schools for the past 20 years or so. They miss out on so much by not speaking Turkish as the language is the root of the culture. So I am lucky.
What a great story Pattz - you are a trouper! I can agree with the other comments; exercise really helped my Dad for a long time. He was determined to stay mobile and would go for walks around the block with one of us holding his hand for stability. When his mobility because worse he would do laps along the pathways in his care home, with one hand on the railing to keep steady. Not only did it help keep him moving, but it also helped his mood and positivity 
Thank you for even more confirmation on efficacy of exercise. Still nagging at this end - to little avail so far.
Searching the forum for something? Here's a good trick.
May I join you here ?
PSP eye problems
