Making plans

My father has recently been diagnosed with PSP but we think he has had it for some time. His breathing and speech is already impacted, he is finding every day activities very hard and gets very tired. Although he still goes for a short walk each day. My family are all planners and with a condition like this, we are all floundering a little. Mu mum and dad have a couple of trips coming up in June, which should be ok with some assistance. But they have been discussing this train trip that they would really love to do. It's so hard to know - should they drop everything to fulfill a bucket list item while they still can? Or can they take a gamble that they could still take a trip like that later in the year, say August? I know there is no real answer to this as everyone is different. But just wondering how quickly things progressed for you? Was it months or years? Just wondering how quickly we need to seize the day!

4 Replies

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  • Everyone is different in PSP . I know with my husband when we decide we should get at his bucket list we didn't finish it all , very close but I'm the one that got burnt out because being the care giver ,organizer as well as making sure all his need were taking care of .So my advise for what it's worth is get it done now

    Dee in BC

  • Hi Joanna, my advice is definitely go while he is able and wants to do it. I'm afraid it does get harder (but not impossible) to travel as things progress.

    As you say, everyone is different with PSP and some on this site are still walking, talking and making memories many years after diagnosis. In my husband's case the deterioration was fairly rapid. He was diagnosed in June 2013. In May 2014 we went on a family villa holiday to Corfu arranged by daughter. At that time D could walk using the wheeled walker. In May 2015 we did the same to Spain but he was confined to the wheelchair full time by then, although able to stand to transfer with help. After that, incontinence problems made being away from home much more difficult so outings were mostly day trips. As things progressed further he became less interested in going out and, I think, found it mentally and physically too much. During 2016 I would suggest choices of things to go and do/see but mostly he wanted to just stay in the garden. By this time speech had gone almost completely but he could indicate yes or no by hand squeezing. He died in October 2016.

    In our experience most people were extremely helpful while we were travelling. Book extra assistance in advance wherever you go. We found Easy Jet and airport assistance excellent.

    Hope this is helpful but this is just our experience, as I say, there are many others who have kept up activities and quite intrepid travel much longer than we were able to. Definitely seize the day though and make as many happy memories as you can while you can. Do remember though that it is incredibly hard work for the carer(s) being responsible away from home so don't let your Mum exhaust herself trying to do too much.

    Vicki

  • So hard to say about timing. My guy was diagnosed in 2011 and we went to Ireland in 2013, and he did okay using just a cane. He started to be in a wheelchair all the time very late 2015.

  • Hi Joanna. Get your mum and dad to go while they can. None of us know definitely what's round the corner so get them to do what they want while they can together. This is the first year since 1966 that my hubby can't go to the home he was born in, in ireland. Very sad for him and me as well. So get it done now. All the best. Marie

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