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Craig’s story

“His reaction time was slow when driving, he became quiet and withdrawn and he was having balance issues.  We went to the GP and they said it was depression!”

Craig first started showing signs something wasn’t quite right in 2016. Here, his wife Jayne, shares how his diagnosis came about. 

In 2016 we started to see some changes in Craig. He was made redundant from work in September 2016. The reason they gave was he was not reaching his targets, this in itself was unusual as Craig was the hardest working man I knew.  

His reaction time was slow when driving, he became quiet and withdrawn and he was having some balance issues.  We went to the GP and they said it was depression!!

In 2016 he fell backwards down the stairs top to bottom. We went to the hospital and they sent him home with a clean bill of health. When we got home the same happened the very same night.  The following day we were flying out to Cape Verde to celebrate our 25th wedding anniversary. He wanted to go, I wanted to cancel.  He struggled on that holiday, I wouldn’t let him do anything as I was frightened he would fall and end up in hospital whilst there. 

On our return we had many appointments, hearing specialists, balance testing, blood tests and MRI. Nothing was identified. Then he had a slight tremor in one of his fingers.  Finally, in 2018 he was diagnosed with Parkinson’s. We were relieved that at least we had an answer and even though we knew it could not be cured, it could be managed with medication. 

Craig went to see a nutritionist and she said read from her notes that he had PSP. I had not been in that appointment and waited outside. I asked Craig if he asked her about what it was and he said no.  So I went straight home and Googled it.  It was like someone had pulled a rug from beneath me.  

Our appointment with the Parkinson’s consultant confirmed it was PSP and she did a few simple tests, clock face, writing his name, tapping his leg and following the pen.  She explained the disease and I thought her to be quite cold but I guess how do you dress it up?  The medication he was given made no difference and Craig may as well been given smarties. 

Once the diagnosis was made everything seem to happen at once. Insomnia, he couldn’t walk at all without assistance, could not focus his gaze, loss of bladder and bowel control, couldn’t speak and then the choking.

I was on the PSPA forum and read other peoples stories and chatted to a few people.

I wish people knew how quickly it can progress. Always ask for help and accept when it’s offered. You can’t do it all yourself. Make sure you have everything in place. Craig was only 58 when he died, we thought we had many more years together and plenty of time to make wills etc. but we didn’t.

Most of all make memories as best you can, it is hard work and never feel guilty if you are angry. It’s not the person you are caring for it’s PSP.”

Karen’s story

“We continued to live life to the full.”

Dawn’s story

Dawn’s dad, Noel MacCoombe,  was a really athletic and active man, having played rugby and boxed when he was younger.