Sadly I'm writing about the passing of my beloved TJ last Thursday 17th May, 2018.
After another hospitalisation for suspected aspiration pneumonia, he was getting ready to come home again when he had a turn for the worse. He had a morphine pump inserted into his abdomen which controlled his pain but after 6 days finally took his last breath. I was with him for the past four days, sleeping in a bed alongside of him. The staff in the John Hunter Hospital, Newcastle, Australia were amazing and were the same ones that looked after him for 3 months after his spinal cord injury. This injury masked a lot of the symptoms of this revolting disease and he was only diagnosed with PSP on 2nd March, 2018. Thank you to you all for your posts that were very informative and helped us on our journey. TJ is now without pain. He was and will always be much loved and missed by family and friends. Let's all pray for the day there is a treatment and cure for this horrible,horrible disease.
Caz49
Written by
Caz49
To view profiles and participate in discussions please or .
So very sorry to hear of the loss of your TJ. It seems shockingly fast - but I have to recall that you didn't even get the PSP diagnosis until recently.
You're right - it's a vile disease and no-one deserves to have it. Why, is a mystery that is as agonizing as the disease sometimes. I'm glad your husband is free of it - but what a loss to you, now.
So very sorry for your loss. Such a short time since his diagnosis, but I understand the masking you spoke of. My husbands symptoms were masked by his familiarity with his surroundings until he had brain trauma at which time everything came to the surface.
As you say TJ is now pain free and that is a blessing.
Now you'll need to take care of yourself and try to find acceptance.
So sorry to hear that TJ has passed away. May he rest in rest, finally free from this evil disease. I join you in your prayers, that one day they find a cure for this illness, a bit of knowledge by the professionals now, would help.
Now is your time, take care of yourself, be kind and gentle, nothing has to been done today. Do things your way, grieve at your own pace.
Caz so sad at the way this has happened. At least he is free of any pain now? You too for that matter. Of course you have a new pain now. I hope you have some support? Thinking of you and your TJ. Bless you and strength to you too.
So feel for you, as I am afraid I am close to losing my beloved Leon here in Australia too. Thinking of you at this frightful time. It is certainly an incidious illness that I would wish upon no-one. Hugs and thoughts are with you Marg H Howlong N.S.W.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Our PSP Journey is Over
The Bluebird
Gratefulness for the love and support this group has for each other. 
