Life after having a stroke can be exceptionally challenging. At HERE, we want to speak to people who have experienced this to understand the complexities of their needs and make sure they get the support they need. So, we’ve asked John, someone who has first hand knowledge of having a stroke and living with hemiplegia* what it has been like for him.
Hi John**, can tell us a couple of things about yourself and your condition?
In 1980, at the age of 43, I had stroke causing total hemiplegia* of my left side. Following brain surgery, I was in hospital and Garston Manor Rehabilitation Centre for about 6 months where I received intensive physiotherapy and occupational therapy.
With such excellent care, the only (albeit permanent) traces of my stroke were a dropped left foot and some weakness in the left leg.
It still affects my life in lots of ways and there have been moments where my condition has declined substantially. After a fall about 10 years ago, I’ve needed more and more assistance. I am now almost completely immobilised, apart from short trips in my electric wheelchair.
What sort of things do you enjoy? Do you have any hobbies?
In addition, and despite my immobility, I get a good bit of enjoyment out of life – television, my talking books, visits to the pub every Sunday in my electric wheelchair followed by lunch at my sister, occasional visits further afield, contacts with friends by way of email, telephone or snail-mail, receiving visits from them, etc, etc.
What sort of equipment and gadgets do you use at home?
I’ve used lots of different types of equipment, depending on my needs at the time. Over the years, I’ve ‘graduated’ from two walking sticks to a tetrapod plus one stick, from there to a walking-frame, and from there to a wheelchair.
District nurses and therapists who used to visit me in my home have been very helpful. They’re obtained for me numerous items, including a wheelchair, commode chairs, a bath lift, and a reclining chair.
I was relieved to find that I was able to have a stairlift fitted in my home as a leading supplier of stairlifts said that it would be impossible to fit one. However, another supplier fitted one without difficulty! It’s great because I can go upstairs in my cottage now.
Do you have any other help at home?
Yes, I have carers, and as I’ve had different kinds of carers over the years, depending on what I needed at the time.
I’ve had regular visits from District Nurses and Therapists for about 10 years, who dealt with various problems arising from time to time with my leg. Since 2011, I have needed full-time, live-in, carers. The cost is horrendous, but I have substantial support from my family. On the plus side, my carers have been delightful and have brought a bit of jollity into my life.
Back in the 1980s, how did you find going back to work after your stoke?
I managed, but I needed assistance to walk. I wore a calliper and was able to walk with two sticks. After a while, I got my driving licence back. Since I could no longer travel to work by the London underground, I was able to obtain a grant towards the cost of taxis from the Manpower Services Commission.
And finally, is there anything you’d like to share with one in a similar situation?
I’d like to share with you my experience of physiotherapy in the weeks following my stroke and brain operation.
In addition to the physiotherapy I was given, I sat in hospital focussing, in the first place, on my useless hand, making repeated mental efforts to ‘will’ it to rise. I did this (shall we say) a thousand times, without any result. But the thousand-and-first time my hand suddenly did rise. And then my forearm, and then my entire arm, yielded to the same treatment. My leg took a bit longer, but eventually that got working again also.
Accordingly, it would seem desirable for patients to supplement their physiotherapy with a lot of personal persistence – and optimism.
If you are in a similar situation to John and have recently left hospital or are spending lots of time in rehabilitation, you’ll know that there is so much to think about. At HERE we are trying to help you navigate your way and get the support and equipment you need. Take a look at our website for more information, or if you’d prefer to talk your situation through with someone, call 0300 222 5709 to speak to a friendly, impartial advisor.
*Hemiplegia is when you get paralysis in one side of your body and often happens to people who have had a stroke
** Names have been changed for confidentiality reasons