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

[Tot]

Following on from my post last December, I have now done my second journey by first class travel and have discovered all first class is not the same. My first trip was with LNER this one was with GWR. GWR make the most of promoting their meals service which is served in the dining car of their Pullman trains. Otherwise I only read that they served coffee, tea, biscuits and cakes. Not strictly true, I did have a boxed lunch similar to that I had with LNER but only they standard disposable cups and paper napkins. Not a major issue as the journey was still worth it in terms of space and room to move. It will be interesting to see if the extras that go with travelling first class, are standardised as it becomes a national train service once in again.

[Janben]

@Tot Our luxury which is definitely a necessity is flying Business Class when we visit our daughter once a year [she lives in both Philippines and Thailand]. We meet in Thailand. There’s no way we could travel without going in Business Class. Luckily she helps with the cost .

[Tot]

I’m glad you have found as I did Janben that travelling first class (or business class in your case) makes sense. Obviously it won’t be for everyone. There will be some who think it is money wasted and I must admit when l first thought of it, it needed something of a mindset shift for me before I felt comfortable enough to book it. The truth is, it ticked all the boxes especially the one that I was happy to take occasional short trips to see family and friends - I was in danger of losing that as I was beginning to if not dread, certainly not look forward to the journey, which I’ve always thought of as an integral part of the trip.

I think Parkinson’s can teach us a lot if we choose to see it. For me the key thing is that I need to live in the present. There is only so much planning one can do to do to Parkinson’s proof the unknown future we all face. I’ve done what I can in that regard, just revisit it from time to time to keep it all up to date and now I live for today and if a bit of budgeting to travel longer distances first class enables me to have the best life I can, then that’s what I will do.

I hope you can continue to enjoy the annual trip to see your daughter for a long time to come.

Tot

PS that is some annual trip it sounds wonderful. May I ask how long you stay. It must be terribly hard to say goodbye when it comes time to return home

[Janben]

Hi Tot, we do 23 days but this includes travel either end [ approx 17-19 hours] plus time difference. It’s the time difference that’s the killer especially with hubbys meds. He’s pretty whacked for about 3 days until his meds even out, but we’re with her and that’s all that matters.

We’ve made pretty much this journey for the last 20 odd years, but it was originally economy as she and we didn’t have much money. We didn’t enjoy the economy class , but we did do some brilliant travelling with them on a budget [backpacking with our suitcases] .

Luckily daughter and partners business is flying, so we don’t spend a penny when out there , as they have their own place,they pay for all our meals out and food as well.and if we need it she helps with the flight.

Yes Tot, it is really hard to say goodbye. I’m a sobbing wreck and hubby manages to keep his in until we go through to departures.

[Janben]

Edit:

@Janben

Luckily daughter and partners business is flying

Her business is doing well, it’s not a flying business

[Tot]

It would have made sense when you wrote it I’m sure Janben, it’s when you read it back you realise something could be read a little differently lol.

What a wonderful trip and worth every penny of whoever pays. However hard it is for your husband to manage his meds etc and however hard it may be to leave, you will have wonderful memories built up over a long period. Maybe you should write some of them down, no doubt you have seen a lot of changes over all that time and it may be fun to have a record of the bits you remember most - you could add photos or maybe clip art (which is what I mostly use with my photobooks) and if you want to you could turn it into a sort of scrapbook and use all sorts of bits and pieces to decorate the pages -which is what I did when I stopped fostering cats I used a simple black paged photo album and love looking at it from time to time. The photo shows a couple of pages from the scrapbook. Most of all though I hope you continue to have many more annual trips flying business class so you can enjoy the journey as much as seeing your daughter and her husband and continuing to build lots of precious memories

Tot

[Janben]

@Tot Yes we will continue for as long as we can. As I said it has become more difficult with each year. I do all the booking [with daughters help, as our flights have to match up]. Also the insurance which is another hurdle as it’s increased unbelievably in the last few years since covid. Plus we have in the last couple of years both turned 70 which doesn’t help at all.

I also sort all the packing, in fact all hubby has to do is decide what he wants to wear whilst away. plus what he’s going to wear whilst travelling [ even then we have a discussion ]

Anxiety is a big part of his PD so by doing all this it alleviates it for him so therefore his PD settles, if that makes sense?

It’s an idea about the scrapbooks, we do have a lot of our photos on my chromebook which we do look at occasionally.

Daughter and hubby went backpacking for a year, then extended it to 2 years and they did a written blog with pics online which I duly printed off every entry it was brilliant I have 4 large ring binders which I have read a few times through the years.

During their 2 years they had started their business , that was over 20 years ago but it has worked out well for them.

We brought her up to be independent and to live the best life she could, so we can’t complain that she now has, we are so proud of what they have achieved even though we only get to see her once a year. though she does say, if they still lived in the UK, they were a couple of hours drive away and we used to go for a weekend to see them that it’s the equivalent of 10 weekends

[carlbidwell]

What you’ve described does not feel like a luxury at all, but a way of making life manageable and less stressful. That sense of calm and support during your journey is so valuable, especially when Parkinson’s can make everyday situations overwhelming. It’s a good reminder that if something genuinely improves your comfort and confidence, it is worth prioritizing without guilt.

[Janben]

You may be right Carl, but flying business will always be a luxury to us,. Just an update we were due to fly out on 1st March, unfortunately we were flying with Emirates, so our flight was cancelled. Hubby was stressed about the flight out, then when it was cancelled we managed to rebook for a few days later, that was cancelled too. So we cancelled the trip totally. He was really bad for a couple of weeks, but has settled now.

Good news is that we have been able to re arrange to go the middle of July, with another airline that doesn’t transit the Middle East

[Tot]

Hello to all who have replied to my original post on ‘Is it a luxury or a necessity.’ Of course cost will always come into it and may mean that some things, like flying business class on a long haul flight for eg, may simply not be possible. The main point I was making was that it is worth considering all options when we find something, whatever it is, is creating some sort of obstacle and not just stick with the status quo just because it’s what we have always done. My post happened to be about train travel and my forthcoming trip to York. I used to view the journey as part of the trip, something to be looked forward to. A few bad experiences changed this into feeling that the journey was something to be endured not enjoyed. Travelling first class, like the majority probably, never crossed my mind until I became aware that the actual journey was potentialy becoming a problem.

Since writing that I have applied the same principle to other things. I have a personal trainer 3 x p.w. Pre parkinson’s I would not have considered that - it just wasn’t something that ‘somone like me’ would consider, it would have felt a bit pretentious. However I was having limited success in developing a regular exercise routine which I knew was important and had a variety of ‘stop/start’ experiments before concluding the only way it woud work for me is to have a trainer who would come to my home. (I have written about this elsewhere on the forim) I have now been with my trainer over four years and I can categorically say in many ways I am fitter and stronger than I have ever been and I believe that the reason I continue to hold up quite well is due in no small part to my getting a personal trainer - it may once have been not even a luxury but something I would never have considered, but now I consider it an absolute necessity. On a different tack but along similar lines of the need to change your thinking to give the best chance of living well with Parkinson’s, I now raise formal complaints et much earlier and much more readily. My local council and leaseholder are not exactly the most efficient of services and frequently break their own actions. So if they say they will get back to me within ten working days and don’t, I will give a couple of days grace and then contact them. Time was I would just wait until they got in touch. To be proactive by holding them to their deadlines keeps the stress/anxiety of not knowing what was happening, manageable.

So my original post has now expanded to thinking more generally around any situation that potentiallly affects my symptoms. I have long held the view that the mindset you hold can have a +ve or -ve impact on one’s symptoms this is just an extension of that and the principles can be applied across the board if you so choose. It’s not always easy to break away from doing what you have always done especially when some of your changed actions cause eyebrows to be raised in others; but it is me that is living with Parkinson’s not them. If it means I can carry on living well with Parkinson’s by ensuring that I keep an open mind to all options available however out of character it may feel, then that is what I will do

Tot

[CandicePUKMODTEAM25]

Hi, @Tot. Thanks so much for sharing this - I’m sure there’s so much in here that will really resonate with others.

It’s great to hear how you’ve adapted things to suit you and found what helps you live well with Parkinson’s.

That mindset of keeping an open mind and doing what works for you is really powerful - thanks again for sharing.

Take care

Parkinson’s UK Moderation Team

[Tot]

Thank you Candice for your reply. The longer I have my Parkinson’s, which will be 17 years post diagnosis come December, , the more I think that living well with Paekinson’s is much more than meds, managing symptoms and exercise (and for me personally I would add the power of a positive mindset) is the benefit of looking at my response to many things. Not to necessarily change anything and everything’ but look at things in terms of life today which is very different to the life I was born into where roles and social norms were vastly different but shaped me as a person and influenced my thinking and responses. I think that gave me much that still holds true but equally it can prevent you from taking advantage of how life is today and that is true for all not just those with Parkinson’s. For me it has brought a huge bonus - to look at how and why I react as I do and to change that without guilt or a lot of explanation gives me back some control over my life, confirms I have a voice and that my life is as good as it can be. When living with Parkinson’s that takes so much, that means everything……and here endeth the philosophy of Parkinson’s life according to Tot lol