Life with Parkinson's under lockdown: Pauline's story

Pauline lives in Suffolk, with her husband of 45 years, Mario. She was diagnosed with Parkinson’s in 2011. Here she shares her experiences of lockdown – and how her sunny side is seeing her through.

How am I coping? Well so far so good. My husband, Mario, and I haven’t strangled each other yet! I admit though, it is difficult just seeing the same one person 24/7, but we have managed somehow to get around this. I usually wake up at 5:30 for some reason, and I let him sleep until noon, so that gives me the whole morning to do what I like without interruptions. We have a pleasant afternoon together, doing whatever needs to be done, or just watching TV. Then we have our dinner and spend the evening together. At about 10:30, I crawl off to bed, leaving Mario to do whatever he wants to until he goes to bed. The plan seems to be working and the days pass in harmony.

I have decided I won’t let lockdown ruin my optimism. At first, the days without going out were difficult. I was not getting any exercise and my body and mind were craving fresh air. I am now doing my best to do some physio every day, but before that I was too stiff to walk when I woke up, the pain was worse, the shakes were worse, sleep was a thing of the past. If I was a pessimistic person it would have been easy to become depressed. As it is, I have been blessed with a sunny nature and try to see the best side of things, or at least put up a fight.

There are many people like us, who are old and vulnerable with underlying health conditions, but who are not sick enough to be on the very vulnerable list. Don’t get me wrong, I’m glad I’m not on that list, but if I didn’t have my neighbour, I would have to go out and risk it.

Getting supplies

Luckily, before we were told to stay at home, I’d got a 2-month supply of my medication and we’d done a big shop. So with the fridge, freezer, larder and medicine cupboard bursting at the seams, we were unwittingly prepared for lockdown. As supplies began to run low though, I found it difficult to navigate how supermarkets are prioritising who can get online shopping. We tried getting a slot with Ocado and Sainsbury's and others, but it was impossible. We did keep trying though and were finally rewarded. Honestly, it was like winning the lottery! So far we have managed to do 3 shops, so we won’t starve.

We only have 1 neighbour and she is still working and mixing with lots of people, so unless it is urgent, we agree it is better to avoid contact with her. There are many people like us, who are old and vulnerable with underlying health conditions, but who are not sick enough to be on the very vulnerable list. Don’t get me wrong, I’m glad I’m not on that list, but if I didn’t have my neighbour I would have to go out and risk it. It worries me that there might be some people frightened to go out and not be able to shop. 

I find I am cooking and baking quite a lot. I think many people are doing the same because flour and caster sugar are becoming difficult to find. My son, Alan, kindly bought me a year’s subscription to an online learning platform, where I can take classes led by chefs including Gordon Ramsey and Wolfgang Puck. So we are now having gourmet dinners and I am learning to cut food without chopping off my fingers. I’ve been reading a few recipe books to make some cakes. The problem is though, too much food and not enough exercise means we have both put on weight. Mario doesn’t know, but we have been on a diet since 2 days ago. I have stopped baking cakes and I am trying to make meals as healthy as possible.

I know this bad moment will pass, it may be a long time, but we will get through it and be able to meet our loved ones again.

Keeping busy

Being inside all the time is hard work, but I try to keep busy, which isn't difficult – the days are never long enough for me. I always manage to find something to do, though sometimes I push too hard and overdo it. Alan and my daughter-in-law, Alessia, are expecting a baby in the summer, so I’ve made a quilted cot cover, which I am quite proud of. I also finished 2 crochet blankets and made a rosette to hang on the door when our grandson is born  yes, it’s a boy!

Recently, I have started getting out in the garden. We are very isolated here, so are quite safe. Apart from enjoying the sunshine, I am getting some weeding and tidying up done, a little at a time. 

I know this bad moment will pass, it may be a long time, but we will get through it and be able to meet our loved ones again. Lockdown coincided with our annual family get together and it was very disappointing to have to cancel especially as I was really looking forward to seeing Alessia's growing bump. I miss her and Alan terribly and hope it will be over before my grandson is born. Let us hope our scientists can produce a vaccine soon. Until then, we just need to keep safe, stay alert, protect the NHS and save lives  and don’t give up.

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