I apologise for not writing sooner. We've had a mad week.
Phil had his appointment with Prof Morris last monday. We went armed with lots of questions and were really hoping to come back with advice and knowledge to share.
However, although phils symptoms look pretty convincing to be psp, Prof M wanted to hold back on a diagnosis for now. The reason being - his young age of 42! P ticks alot of boxes. He has slow vertical saccades along with stiffness in limbs and reduced arm swing , to name a few. There is one more genetic test outstanding . This result will be back in around 6 weeks. Prof M has booked a phone appointment end of January with us. If this test shows he hasnt got a faulty gene, he said he would still hold back on psp diagnosis. He said if P was in his 70's he would diagnose him.
He felt it best that we didn't ask our questions at this moment in time. He wants to see how P's symptoms will progress. So it's a case of ' wait and see'.
He was very supportive and reassured us he would help us in any way he can. We discussed medical retirement. I can't see P being able to work much longer.
We are still feel in limbo. But after talking to other young psp sufferers, (on here) we realise that P may never get a definite diagnosis. We don't want to wait around for a diagnosis we may never get. So we feel it's important to look into our finances, getting things in order and we are going to do all the family things with our children that we want to do. We personally believe that P has psp.
P had his birthday a few days ago. We got through it. We will get through Christmas too!
I'm sorry I am unable to share any knowledge.
This is an amazing forum. Thank you all so much.
Merry Christmas. Xx Emma