A luxury or necessity for quality of life

[Tot]

Quality of Life - When does a luxury become a necessity?

I am writing this piece and posting it on the forum just to see if anyone has any comment to make, or indeed has found their own luxury that has become a necessity since being diagnosed with Parkinson’s. Allow me to explain.

This week I had a few days away and travelled first class by train. I had not done that before, indeed I never even thought about it until this trip. The fact is I have had some poor experiences of train travel and as a result this can cause the anxiety symptom that is so difficult to manage at times, to kick in. This can include my feet freezing. Getting on and off trains, particularly long distance ones, can be especially problematic. The trains do not wait long, there is a scramble to get on or off, the aisle is narrow and trying to squeeze past other passengers with luggage etc while everyone including me, is trying to find their reserved seat and get settled is something akin to a nightmare at times. The trains are often very busy, leg room limited, people going up and down to the buffet car etc often means being jostled as someone tries to create room for someone passing the other way - you get the idea. I like train travel but it was becoming more of an ordeal, something to tolerate to get to my destination and not an enjoyable part of my trip.

That was the situation I was facing with my recent trip. So I began to think of other ways to make this journey more relaxed and comfortable for me. It wasn’t possible to do what I normally do, which is send my luggage on ahead so that I travel with only one small bag. This time I had to take my main luggage with me, which made it more important to consider making the journey as simple and relaxed as I could. The obvious thing to look at was travelling first class. Obviously it was more expensive but by buying an advance ticket and my rail card, it cost £80 return. I factored this intp the costs of the trip overall and in truth it didn’t take much adjustment to be able to cover this amount so I booked. What a revelation. The train pulled in, I put my bag on the train and went to step in, a staff member saw me came out to take my bag and show me to a seat. The carriage was all but empty. When we got to my destination my bag was taken off the train by one of the train crew, who made sure I could manage before leaving me. It was the same on the return. I had a peaceful, quiet journey, comfortable seat and loads of leg room. Food and drink were brought to my seat with unexpected touches like coffee in a china mug, a glass tumbler, proper cutlery - even the napkin which was paper, was thicker and larger than normal and felt almost like linen. I had an enjoyable and stress free train journey for the first time in years.

I now consider first class train travel for long distance train journeys anyway, a necessity not a luxury because it doesn’t impact on my Parkinson’s, and that alone is worth everything. If all it takes is to factor in the cost to the overall cost and plan early so that there is time to save up for the additional cost, I will do that.

This goes alongside what is arguably my other biggest expense, which I have previously written about on the forum, and that is my personal trainer with whom I do 3 x 1 hour sessions per week. Currently paid for out of my PIP but if that was stopped I would do everything I could to be able to continue my sessions. I am fitter and stronger than at any time of my life and I want her in my corner to help manage whatever Parkinson’s may throw in my direction for as long as I can raise the money - I would give up other things before losing my personal trainer.

There is no doubt that these two things, neither of which I would ever have normally considered and have only done so because of my Parkinson’s diagnosis, I now think of as a necessary part of managing my Parkinson’s symptoms and allowing me a quality of life I would not otherwise be able to have. I just wondered what others may think or indeed, if any of you have found something that might be seen as a luxury to be necessary or at least worth it, in making life with Parkinson’s not quite such hard work.
Tot

[Littlenanny]

Hello Tot
I have just read your post and found it very thought provoking, I have not looked at those two situations in that way! I suppose it also boils down to priorities, it can be difficult to change a lifetime’s habit with spending money on luxuries, but as you say if it’s factored into your budget from the outset, it’s not such a surprise…,So luxury or necessity what’s it to be?
As the old saying says “you can’t take it with you“ and we only have one life.
I think I need to readjust my way of thinking on certain expenditures.
Thanks Tot
Little nanny

[Plus1]

Hello Tot
Thankyou for putting this forward and quite honestly not something I would have thought about but having read your post it makes total sense.
I feel we become ingrained with a lifetime of habits and certainly travelling first class by train would have previously been considered a luxury. Explained as you have I feel there is very sound ideas to consider it a necessity rather than luxury. As my husband with Parkinson’s is a full time wheelchair user will definable be looking into whether our rail companies provide first class wheelchair spaces.

[Tot]

Thank you both for your replies. You are both quite right we do rend to do what we have always done and I was no different. Choosing to travel first class didn’t ever enter my conscious thinking and I have had some poor experiences and the journey to and from was becoming something to be endured. So this time I found myself thinking their must be a better way and the obvious first step was to look at first class and to be honest I expected it to cost more - but it pays to be organised, I kept my eye on when the advance tickets for the dates I wanted became available and also used my rail card. The key thing was, although a little nervous not being used to first class, it did not impact on my Parkinson’s symptoms and I was able to enjoy the journey as part of the trip. It got me thinking that this wasn’t a luxury as I previously viewed it and could not justify the cost - choosing this option gave me a quality to my journey that I simply couldn’t get travelling standard class (I’m thinking long distance rather than local). It changed my thinking absolutely. I’m glad it gave you food for thought that was the point of posting it. You may choose to do as you have always done but just maybe there is a better way if we are open minded and not just about first class rail but all sorts of things we carry on doing the way we always have.
In answer to your wondering about wheelchair space. On this occasion I travelled with LNER and there was certainly a whhhelchair space in my carriage, This is copied from the National Rail site.

AI Overview

Learn more

Most trains in the UK can accommodate wheelchairs in first class, as long as they meet the government’s prescribed dimensions of 700 mm wide by 1,200 mm long. However, some older trains can only accommodate wheelchairs up to 550 mm wide.

To ensure you have a wheelchair space reserved for your journey, you can:

• Add First Class to your journey information: When you make your reservation, you can specify that you want to travel in First Class.
• Contact the train company: The more notice you can give, the better.
• Check the National Rail train formation guide: You can use this guide to see if the train company you’re traveling with has wheelchair spaces.

If a wheelchair space isn’t available, the Passenger Assist team can help you find other options. They can also help if you’re traveling with a companion and need a seat for them.

Some train companies that are considered to be accommodating to wheelchair users include: CrossCountry and Virgin Trains
Tot

[Margs1]

Hi
When my daughter was at Liverpool University before my Parkinsons diagnosis I used to travel regularly from Euston to Liverpool.

The first class ticket was only a few pounds more and on occasion slightly cheaper. You could get free drink and croissant. At Euston you could use the first class lounge again with free drinks if I remember rightly croissants. It was well worth going first class.

My daughter now lives in Wigan and the first class tickets are a lot more expensive. I could never understand why it was so different for the two different journeys.

Im not too bad so far, touch wood, but going forward I would think about using my Attendance Allowance to travel first class when the time comes.

That is if the Government hasnt taken the AA away by then.

[Tot]

Hello Marga1
I will certainly factor in first class travel on any future trips as I said in my post but you are right about train fares, they make no sense. Some years ago I was at college in Manchester and the fare from London to Manchester was more expensive than that from Manchester to London. It didn’t make sense then and it doesn’t now but it is quite shocking how many times this holds true of many fares/journeys. One of life’s many mysteries.
Tot