TRAVELLING with PSP
Hi everyone. Thought I would tell you about how Ch and I managed to travel from Australia to Norway for grandchild christening and back, over the last month.
We had 3 legs on outward journey planned to be over 21hours (4 legs and longer on the way home).
The day before we left he had a panic attack "I don't want to die overseas!". However by the afternoon he was okay as I had just kept calm and let him know that I heard what he was saying and understood. It is not easy to pull out once it is all paid for.
The 2 hour trip left late due to airport problems in the South. I had ordered softer food but it did not arrive and the hard thick toast with stringy salami proved to be a disaster. A massive choking attack occurred , he was in the aisle seat, it was well spotted by 2 gentlemen in the seats in front, one of whom was able to dislodge the offending item. I was jammed in by the tray. Attendants were great. Ch learned that you don't have to eat all food you are offered. I learnt to be more pushy. There was no more choking episodes. We arrived safely.
While in Norway he had 2 falls. One in the house we stayed at due to the raised thresholds they have. Once they put down some bright non slip tape that problem was eliminated. However he injured his hand which is still a bit sore 3wks later. (I would carry tape with me next time).
Then we were 4 people(+baby) travelling 2hrs North, 3 nights in a hotel and 5 nights on a ship and 4 hours on a train. Again we had ordered mobility assistance and handicapped rooms (which had rails & space). Even so Ch fell backwards from bathroom which should have had a handrail on edge of door. (will carry a good suction one next time) (no injury).
I was now on full alert and we got by without further falls.
But there was a new problem - kind of cross between claustrophobia and panic attack- For the cold of the country we were given a thick doona (quilt?) This is something we are not used to and first night Ch awoke very confused and panicking ("Why are we here?") next day okay. Then again in the cabin on the boat. ("I feel very strange - got to get out") We got dressed quickly and went upstairs. Then again on the long flight back where we weren't given the aisle seat I had requested, He was jammed in by the window.
But he did say a number of times "I am really glad we came". So it was worth it and we will go on more trips - while we can.
So travel is good. In addition to a First Aid kit take non-slip tape and good suction handrail, demand the food you need and an aisle seat. Ask for mobility assist (using a wheelchair gives you priority) and handicapped room. Keep calm and respond to stress. Remember to slot in rest days - they are good for you both.
cheers ... Val and Ch
Anyone else with ideas on travelling with PSP?