Girls just wanna have funds...

Where Emma ponders money

Well, hello you lovely lot! Sorry about the lack of a letter last week, I forgot to mention it was half term here and a mini-break from all things writing. But I’m back! Welcome, (lots) of new folks :)

I want to talk about money. Well, actually I’m British so the VERY last thing I want to do is talk about money. But we must, dear reader, we must.

MONEY, n. A blessing that is of no advantage to us excepting when we part with it. An evidence of culture and a passport to polite society. Supportable property.

There can be a tendency within the Parkinson’s community¹ to assume that many PwPs are older who may have completed their working lives and are living in retirement - with a pot of cash to aid their comfort.

This is however not the case. To begin; retirement in the UK isn’t a bed of roses. (I can’t speak for elsewhere in the world but I imagine this is applicable in most places.) Even if you have been fortunate enough to retire comfortably, the cost of living and medical care has risen drastically. Our NHS services have been eroded significantly leaving us with little alternative. We are not yet (and I hope will never be) practised at paying for medical care and have not the infrastructure to do so anyway.

On to the younger Parkinson’s folk; those who are still working or at working age but unable to work. I know many of you are still holding on in there but it is finite. The unpredictable nature of PD means our ability to work can be erratic. Reduced hours and flexible working from home can go a long way to support but eventually, work has to stop. Even if you can continue to work we are facing a retirement age of 70+ - excepting US presidents - no one can work comfortably to that age.

If you are partnered up you may be fortunate, as I am, to be able to live mostly on a single wage. Once you add children and rising costs that wage doesn’t go nearly far enough. We live frugally and might ‘just’ be able to send our daughter to university. ²But as a couple our long-term outlook is bleak. We don’t own property, we have a 14-year-old car that once it dies we won’t be able to replace, we live in a cold, expensive part of the world and I will only get sicker.

But what if you are single? How do you survive the challenges of illness and the financial implications? I honestly do not know.

Yes, in the UK we do have a social security system and disability support but that is increasingly challenging to access. If you are not deemed ill enough because one Tuesday a month you can tie your shoelaces then fuck off you workshy scrounger.

And then there is the cost of being chronically ill and disabled.

Almost all disabled people report high extra transport costs, most report difficulties affording insurance and many pay more for housing, fuel and energy.

The impact of extra costs is profound. The financial penalty an individual faces impacts on their standard of living and can limit their family life, opportunities to learn, work and participate in society. Disabled people are less likely to be able to cope with financial shocks and more likely to have to turn to payday loans to help with everyday living. (Read report here)

I know this isn’t uplifting in any way. I don’t have any answers to these issues other than using our voices, where we can, to vote, petition, and advocate to begin to implement a better more compassionate system.

Anyway on a more upbeat note here’s a wee list you might find helpful:

from Dancingshrub ❤️

1 You are not alone.

2 Degeneration isn’t next week

3 Find a PD hero

4 Adapt

5 Don't rush to tell your boss

6 Exercise!

7 New symptoms may not be PD

8 Take pills on time

9. Be a part of research

10 You are still you!

With love

E xx

P.S. It’s my birthday on Saturday (I’m not a fan) but I would like to remind the Scotland 6 Nations Rugby team that a win would be nice. Or just a glass of wine.

1. By Parkinson’s community, I also include medical professionals, advocates, charities etc

2. I understand that statement is unbelievably privileged - but surely the opportunity for children to do better than their parents is the whole point?!. We are fortunate to live in Scotland where fees are paid by the government so university costs are significantly less than in other places.