Movers and Shakers: Help!
As Parkinson's progresses who do you turn to?
Progressive. It will sound to many people like a positive word - forward-looking, liberal, not stuck in the past. But to anyone with Parkinson’s, progressive is a darker word which they first heard when they were diagnosed with a condition which is incurable and will inevitably progress. This week’s episode of Movers and Shakers is all about something we don’t usually like to think about - what happens when your Parkinson’s progresses to the stage where you and your carer find it impossible to cope?
Paul Mayhew-Archer is in charge of an episode he calls “Help!” and for him this is personal. With typical Paul candour and humour, he tells us his Parkinson’s is suddenly getting worse and, because he had not taken seriously enough the idea of progression he is totally unprepared for the impact on his life:
“I have run my life totally back to front. In my 30s, I could manage stairs with ease - so naturally, we lived in a bungalow. And in my mid 50s, when I probably had Parkinson's but didn't yet know it, well, that's when we moved into a house on three levels.”
Now just as his condition makes moving around more difficult, Paul’s main carer his wife Julie is having mobility problems of her own, after having surgery on her feet. “So just when I need more care from my carer, my carer needs care from me, and I am rubbish at caring,” says Paul.
We then explore the question of what help is available from the government as we progress towards needing the involvement of paid carers, as well as the volunteers in our homes, with the help of two great guests. Claire Toplisek is an executive assistant but is increasingly becoming a full-time carer for her husband. He was initially diagnosed with Parkinson’s but later rediagnosed as having an even more serious condition, Progressive Supranuclear Palsy or PSP, which does not respond to medication.
Delia Wells is the Parkinson’s UK advisor for Oxfordshire, with a huge fund of knowledge of how the care system works. She has helped Claire, who joined the very active Oxford Parkinson’s UK group after her husband’s initial diagnosis and still finds it a very useful community for advice on his PSP.
She says there is plenty of information out there, but goes on to sum up the pressures of caring for a loved one: “You want to give them the best quality of life that you possibly can so they can enjoy the time they have. So getting all of that information together, I found particularly stressful, which led to me having quite a lot of time sick off of work because of the pressure.”
Claire stresses that, for many older carers than her, searching the internet for advice does not come naturally - Gillian Lacey-Solymar points out that one of the aims of our Parky Charter is to give Parkies and their carers better, simpler access to information.
That is what makes people like Delia Wells so useful. She takes us through the basics of who pays for the steep costs of care whether in a nursing home or at your own home - basically, if you’ve got more than about £23,000 in the bank, you do.
But there is some help that doesn’t get means-tested. Paul recently had extra banisters put up on a staircase, and Claire explains how an occupational therapy team came to assess her house and later provided extra equipment, including a handrail and a recliner chair which made it easier for her husband to stand up.
Delia says most areas should have occupation therapy and mental health teams available to carry out assessments - it is just a case of finding them.
Then on to the subject which always causes controversy - blue badges for disabled drivers. Mark Mardell explains that he has just been turned down for one by his local council, after providing a letter in which his doctor explained his difficulties with walking: “They rejected it literally within five minutes of me filing it so they can barely have read it.”
Claire has some advice for him: “You've got to think about your absolute worst day. Yes, some days, as you know, with Parkinson's, you can walk better, and some days you can't walk very far at all.”
What we quickly come to realise is that Oxfordshire seems to have gold standard services for everything from exercise classes - Paul says he loves the “Big, Bold and Balalnced” classes but confesses he hasn’t been for months - to speech therapy. Claire’s husband has been using what’s called a speech bank, recording himself talking on days when his voice is strong, so that when he loses the power of speech, a computer will be able to speak in his voice.
But what if like most of us you don’t live in Oxfordshire? Then there are two pieces of advice. Join your local Parkinson’s group because the easiest way to learn about what is available is by talking to others who are on the same journey. But, above all, keep this phone number on file - 0808 800 0303. That is the Parkinson’s UK helpline where you should find expert advice on all the issues we discuss in this week’s episode.
Excellent information. My brother-in-law in the US, has Parkinson’s. He is 66 y.o. He cut down work to three days a week. The owner of the company loves my brother-in-law and this past summer, insisted on hosting the office bbq on a day when he was working. The younger men in the office have told him if there is anything around the house that needs doing, to let them know. He was a mentor to each one of these young men, when they began their jobs. He still drives, he also goes to the gym, takes boxing classes and aqua classes. He tends his garden and looks after his house. He and my sister love to cook. He continues to participate. They have plenty of family about and socialise regularly with friends. He loves having the guys over for a poker game. Pizza and Italian beefs and beer provided.
I know he will become less able to do all he is doing now, but he is living life to it’s fullest today, which is all any of us can be sure of. He seems to have a kind doctor and I get the impression this is key to coping with Parkinson’s.
While my neither of my parents are affected by Parkinson's, a couple of their friends have been diagnosed recently, and they've talked with them about the big changes in their lives. In both cases, the friends had to move from their homes of many decades - it was heart-wrenching and not what they wanted. However, both houses had multiple stairwells that were too much of a risk, and the spaces also interfered greatly with the carer's (their wives) ability to care for them.
As always, very grateful to have Rory's thoughts on all aspects of this.