Travelling with PSP

[crab2093]

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?

[aliciamq]

Thank you - good thread - we just stayed home for a year😕 For the first time we missed going to our son's cottage up north because I wasn't sure how to manage a rest area stop. I didn't know how the truckers would feel with a woman in the men's rest room!?!!!!

[easterncedar in reply to aliciamq]

Lots of rest stops have single occupancy family or handicapped restrooms. These worked for us for a while. Better was when he wasn't using facilities at all, though. Folks have good luck with convenes for traveling. We relied on depends.

[aliciamq in reply to easterncedar]

It should be easy to check what accomodations each stop has~ now that the weather is changing - I kinda regret not putting a trip up north together😑

[easterncedar in reply to aliciamq]

Where is up north for you? My family has a cottage in Ontario, and we call that "up north."

[aliciamq in reply to easterncedar]

Bois Blanc Island, Sarah. It's very close to Mackinaw Island. We need to take a ferry boat out of Cheboygan, MI to get to BBI. We have family in Wasaga Beach, Ontario. We take the Blue Water Bridge out of Port Huron to get there. Being in Detroit area, we are right across the river from Windsor, Ont.🙂

[LuisRodicioRodicio in reply to aliciamq]

We have had similar situations and the reaction of the people has always been solidarity.

[aliciamq]

I'm glad your huge trip turned out OK!!!🙂

[doglington]

Well done. You will always be glad you did it !

Jean x

[Yvonneandgeorge]

Very very brave, well done xxxxx

[easterncedar]

Wow! What a wonderful adventure! I'm totally impressed.

[Heady]

Well done! We kept travelling until 18 months before Steve died, from the UK to South Africa. After that, we managed a camping trip, yes it was possible, with a lot of strong family members and several other trips in England, with family support.

Please, any body debating, whether a holiday is possible, after PSP diagnosed. Of course it is! You just need good planning and further down the line, support from others. The smile on Steve's face, when we were camping, in a good old fashioned England summer, torrential rain, will live with us all forever. Worth every bit of hardship.

Hope you have other trips away planned.

Lots of love

Anne

[LuisRodicioRodicio]

You are very brave and I applaud you.

In my case we make non-stop plane trips with a duration of 1,5 hours only and choosing schedules that do not interfere much with the daily routine. We travel with a wheelchair and are served with preference. So we do not have the food problems since we eat outside the plane.

We always carry a thickener to add to the liquids. The liquids are taken with a plastic straw that we also carry. We try to absorb liquid through the straw with the chin as low as possible. I suggest in your case to carry proper solid food (could be cakes?) that can pass the airport liquid control.

A couple of days before a trip she is nervous and says he does not want to travel. After this phase we had no problems at the airport or during the flight. The stress of the trip is quite tiring and she needs an extra rest time. Overcome the plane ride she enjoy the rest of the trip.

I hope to be useful.

Regards. Luis

[crab2093]

Thankyou Luis, that is very useful.