Trigger Warning: this blog describes experiences with Parkinson’s, Anxiety and the loss of a loved one. If any of these things are particularly distressing to you, we urge our readers to take care of their mental health and click away. We have provided a full list of the resources Rosie mentions at the bottom of this blog, and hope that her experiences will be able to support others. Thank you.
“This last year has not turned out as I would have planned- a few dates burn brightly in my mind.”
7 August 2021 – my wedding day.
A beautiful day. It follows a surprise proposal from my partner Paul on my 50th birthday in a beautiful hilltop town called Taormina in Sicily. I am very happy, but also at the same time I am struggling – with anxiety and with a strange shaking in my left hand. Friends say I am starting to move more slowly.
My GP refers me to a neurologist who I see two months before my wedding. He had previously asked my GP to put me on some Parkinson’s medication, but when he sees me, he takes me off this, as I say my tremor is still there. He does some tests and says he thinks I have Functional Neurological Disorder (FND), a condition which affects how messages to and from the brain are being sent and received, which can cause a whole array of symptoms. It is basically a ‘software’ rather than a ‘hardware’ problem. It can sometimes, but not always, be caused by anxiety which I’ve had to a greater or lesser extent for most of my life. He gives me some exercises to do.
In many ways it feels like it is down to me to get myself better.
Summer turns to autumn and I start to feel really unsteady and unbalanced when walking and I begin using a walking pole to steady myself. One day, just before Christmas, I am walking from the car park to the office (a two minute walk generally), when my legs freeze and I cannot move. I am trapped against the wall of Connells estate agents and I have to ask a couple going by to help me into the office. This is very scary and I stop going out on my own. When I do go out, I need to hold onto Paul’s arm to keep my balance. All the while, I am thinking it is my anxiety which is causing the problems. A friend who hasn’t seen me for a while says there is something seriously wrong with how I am moving and encourages me to speak to my GP, which I do. My GP arranges for me to see the neurologist again who I see, with Paul, on 10 January this year. He does some more tests and says, ‘Unfortunately I think you have Parkinson’s’. This comes like a bolt out of the blue, because I thought they had eliminated this diagnosis last year. However, I am also relieved that I haven’t been making my symptoms up: an increase in anxiety can also be an early symptom of Parkinson’s. I go back on the Parkinson’s medication and this time they have a dramatic effect. Over the next couple of months my mobility improves (albeit using a walker) and I begin to feel much happier in myself. I make contact with the Parkinson’s UK charity, available via this link, who are really helpful answering the many questions I have following my diagnosis.
Another date – 23 March 2022.
I am sitting at my desk at home working when I realise I’ve got a voicemail message. It is from a manager at Hampshire County Council. Paul runs the reception team at the council. I call her back and she tells me Paul has collapsed at work and has been taken to hospital in an ambulance. She doesn’t know any more, but suggests I get to the hospital as soon as possible. I haven’t driven since my legs froze so I desperately ring friends to see if they can take me there. The first two go to voicemail.
Then I call Jo who is working in the office- she says she’ll be right round to pick me up. My thoughts are spiralling out of control while I wait. Paul had had a minor heart attack nine years previously and although he was very fit, he was not that good at going for regular check ups. Jo arrives and we drive to Winchester hospital, park and Jo sits me on a chair in a queue outside A & E while she goes to speak to a nurse. I later find out the nurse had told Jo they were too busy and we needed to go home and phone up, but Jo insisted we speak to someone. We are taken into a room and 2 men come in – a nurse and a doctor. I can’t remember if I stay sitting or stand up. The doctor tells me they tried everything but Paul’s heart and breathing had stopped. I ask if Paul is still alive. He says no. I scream. My life as I know it stops. Jo (who has already gone above and beyond the normal bounds of friendship) comes with me to see Paul then takes me home.
The days and weeks that follow are a bit of a blur. I wonder how I will carry on. There is so much about Paul that I miss. If you have ever lost someone close to you, you will know there is a mountain of admin to do following a death, at a time when you least feel like doing it. But planning the funeral does help tether me a little to reality (I’ve organised enough events at work in my time) and my amazing family and friends rally round to support me. I am signed off work, eventually returning around the middle of May.
A couple of weeks after returning to work, I notice my left leg is dragging a bit.
It doesn’t bother me at first and I begin to make tentative steps to rebuilding my life without Paul. I start going to the local church, Three Saints Bartholomew (available via this link), and make enquiries about joining the WI (my mum would be proud, she was a staunch Wi-er). But by the Jubilee weekend at the beginning of June I am struggling to move around the flat and need to use a walker again, which I haven’t used inside for a couple of months. I am desperately missing Paul and spend most of the weekend trying to speak to someone through 111, finally speaking to a doctor 36 hours after my initial call. This does however set off a chain of events which eventually sees me being admitted into hospital. They are worried about my lack of movement in my left leg and think I may have had a stroke. They do a CT scan which confirms this isn’t the case but they keep me in for a week to do further investigations. The neurologist who diagnosed me comes to see me and increases my meds.
I actually enjoy my week in hospital. I diligently practice my walking during the day, going up and down the ward. A lady with dementia tells me to stop running. Chance would be a fine thing! I eat properly for the first time in ages and put on about 4 pounds! I chat to the other patients, read and watch the comings and goings on the ward. There is even a bit of excitement when someone throws a jug of water across the room! I’m not so keen on being woken up at 6am to have my blood pressure taken. The OT and physio come to see me and are happy that I’ll be able to get around once I get home. Whilst in hospital I’ve organised a care agency to come in twice a day to help me with meals and laundry. My leg is not better but the hospital staff are happy that I’ll be safe at home. My step-daughter, Rachel, arrives, takes me home and gets me settled in. I cry a bit when she leaves.
Two days later, another physio, who I have found out about through the Winchester Parkinson’s group, available via this link, visits me at home. She is a force of nature and she gets to know me well over the coming months. She tells me outrageous stories and makes me laugh. Although she agrees I have Parkinson’s, she doesn’t think my leg is presenting as a normal Parkinson’s symptom and wonders if the trauma from the year may have had an effect on its deterioration in movement. FND is mentioned again. Over the coming months she continues assessing me and comes to the conclusion that it probably is Parkinson’s affecting my leg after all, as the medication does seem to have some positive effects on my leg. I am still using a walker at home and outside and struggle to get out and about on my own. It is hard grieving and not being able to go out for a simple thing like a walk.
One day fairly recently I am getting ready to have a bath and put my dressing gown on. There is a spider on the sleeve. I shriek and dash through the flat and onto the balcony to brush it off. When I come back in, I realise I have managed to get all the way through the flat at speed without using my walker! My physio concludes that this shows there is probably a mix of FND and Parkinson’s going on. I find it hard to accept that there might be a psychological element to my mobility, but she says it is good news as the movement is there when I really need it. I am seeing a Parkinson’s specialist for the first time next week and I will make sure I get some answers and a plan of action!
Whilst all this is going on, my grief ebbs and flows.
Some days I feel stronger in myself, others I sob under the weight of the loss. Paul was not the world’s greatest talker but it is so quiet at home without him. He was funny, kind and thoughtful and interested in so many things – not least his beloved West Ham football club, Shakespeare, theatre, reading, walking, family, films and music. He was the best husband. I make contact with Winchester Bereavement Support, via this link, and they send a volunteer visitor to meet me. We get on well from the start and I am still seeing her regularly. She is quirky, kind and funny and sends me supportive messages in between visits. She reassures and encourages me and I always feel better after she has visited.
I start driving again a bit but mainly use a lovely company called Driving Miss Daisy, available via this link, to get around. I am able to claim the costs of getting to and from the office back through Access to Work, which can be found through this link. I also use Winchester Good Neighbours, via this link, to get to some medical appointments. With some help from a friend I apply for and now receive Personal Independence Payment (PIP), which helps towards my care costs.
Significant dates have processed through my life over the last year, unbidden and unwanted since Paul died. My birthday was 6 days later and I spent the majority of it crying, tears falling into my bowl of soup in a village pub. Then comes Paul’s birthday, followed by our first anniversary. And now the prospect of Christmas is looming.
I’m told the ‘firsts’ following a bereavement are the hardest. I try to take one day at a time. Have a routine. Be kind to myself. See friends. Work helps and I am so grateful to my kind and supportive colleagues at Action Hampshire. I have watched numerous episodes of Sewing Bee and the Repair Shop: I am neither a good sewer nor maker of things – but the programmes soothe my mind. Radio 4 is a constant friend.
I am certainly not where I would have chosen to be at this point in my life, but somehow I have managed to get through the last few months, organising help from some fantastic local services, making new friends and, as Richard E Grant, the actor who recently lost his wife says, finding ‘a Pocketful of Happiness’ in every day.
