Hi everyone. I came across the PSP Association online. I have never written on any kind of forum before so this is very new to me.
I wanted to share that my beloved husband Phil has two weeks ago been diagnosed with PSP. He is 41. So very young. We have been in total shock and disbelief. Neither of us know what to say to eachother. We are like zombies! We also have two girls age 10 and 13 ( who aren't aware of the diagnosis yet)
Two years ago i noticed Phil was losing his balance /being unsteady. But as he is a clumsy person i didnt take it too seriously and he denied it anyway.He also seemed to be suffering with fatigue . Last August he had 5 falls. All of which were down stairs, steps and his ladder. I also noticed he had a slight tremor in his left hand. His face seemed to look so stressed and i felt he had a personality change. After a gp visit , 2 mri's and eventually a neurology appointment ( in november 2016) it was felt that he was presenting parkinsons symptoms.It was also noted he had a problem with his vertical gaze. We were asked to observe the symptoms over the following 3 months. By now phil was losing his balance every day - not great seeing as he is an electrician! He was also complaining of the cramp from hell in his hands. They go into claws ( his explanation). And stiff neck. Fatigue seems worse.He has mood swings and is not interested in anything. He has been spilling his food when eating and accidentally urinating on the floor whilst using the toilet. He has also just had a chest infection. He was finally given a diagnosis 2 weeks ago of psp.
My question is. Are there any other psp sufferers on here who are in their 40's? We are completely devastated.
Apologies for my long story!!