Prayers and love: It's been quite a while... - PSP Association

PSP Association

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Prayers and love


It's been quite a while since I was in touch but have been unable to think clearly.

It's now 13 weeks since my beloved TJ passed to a better place. Anywhere would be better than what he was living here on earth.

I hope and pray that a treatment or preferably cure could be found sooner rather than later for this cruel, cruel disease.

We were really blessed to have the most caring, compassionate, competent and kind neurologist you could hope for during the last few months.

As TJ passed only after his diagnosis two months before his passing I'm in two minds as to whether it was best not to know earlier. Because of his fall which left him an incomplete quadriplegic his spinal cord injury masked most of the symptoms.

At first I was pleased I didn't know earlier but then again had I known maybe we could have ticked a few things off the bucket list.

These things go through my mind as well as thoughts as, did I do enough for him, could I have done more, did I tell him enough how much I loved him etc. This keeps me awake for hours on end.

Just writing this has helped me as I have tried to keep a lot of my thoughts to myself trying to stay strong for the family.

My love and prayers go with you all to help you through this horrid time.


6 Replies

I am sure you did everything you could and things you couldn't do you had help to see things were done. I know it's hard but try not to dwell on "what could have...." and take comfort in knowing like you said he has to be in a better place.


I can only imagine what you are feeling right now and I still have to face it. Please take comfort in knowing he is now at peace. He went through a lot in his last months as did you . You did all you could. xxxx

Thinking of you xxxx

Dear Caz;

Going through the same thing myself now, I know it's a hard time.

My personal belief is our loved ones knew how we felt about them. I think being disabled they were vulnerable -and had a natural perception of where they were safe and ok, and who loved them.

I read your first posts and it sounded like ever since TJ fell off that porch he was in one medical intervention or another...I wonder how you could have managed much bucket list during that time!

Like you, I am so relieved that my husband is free from this relentless disease. Our loved ones deserved a better life at the end than they got - but at least they had us, Caz: they had loving committed spouses who did their very best to ensure they got cared for and loved. That's something to remember :-)

XXX Anne G.

Yes, Charles is in a better place free from the bondage of PSP. And I know he knew I loved him til the end but...............I feel guilt and shame from some of my actions. I'll have to get used to that I guess.

We tried our best Anne. It's so hard.


It's only been eight weeks for me and I feel the same way. Guilt as well. What could have is over and so sad.

Unfortunately sleep is hard to come by and even though people tell me to "stop thinking about it" I can't and never will.

We tried our best but this awful disease brought me to my knees. I'm still reeling from the funeral and interment but I'm standing and want to help others.

I'm here too Caz. Keep posting. It helps us all!!!


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