I am wife and carer to my polio survivor husband of 5 years but I also had polio as a child so he too is my carer. I have two children who are now in their forties and who have witnessed my problems since I slipped on a wet patch on a floor in October 1988. I am also the founder of this charity which started in early 1996 and have talked in person, by phone and email to many hundreds of polio survivors and their families and carers.
I know it is not easy being a family member, carer or friend of a polio survivor who having recovered from polio with many years of stable functioning is now having new problems of pain, fatigue, weakness and difficulties with tasks of daily living.
Does the following describe the polio survivor you know? Are they strong willed, determined to succeed especially when someone told them they can’t manage that, and works endless hours a day including helping others?
If they are now having new problems of weakness, fatigue, pain and difficulty managing tasks that they could easily manage before, they might have post-polio syndrome.
To experience this further stage to the polio we have ‘had’ is very difficult for us to cope with, but we now understand that it is just as difficult for those that we know, our parents, our siblings, our children, our relatives, our friends and our carers. I think it important to add here that it is also not that easy for our General Practitioners especially if we have been on their books for some years.
It is important to make clear that we can have every other condition instead of PPS or as well as so an accurate assessment by a health professional and preferably one with polio knowledge and experience is essential.
Here is a little story….
A male polio survivor who recovered fairly well had a large garden of which he was extremely proud. For 35 years he had worked hard and landscaped it with a large and productive vegetable patch.
Aged 55 autumn arrives and as in previous years he gets his gardening togs on and goes out to dig the vegetable patch over for the winter.
His 53 year old wife is really worried. Last year she noticed that he struggled to dig the garden and since then has begun to have more problems managing daily life. She goes upstairs and puts her gardening clothes on and goes out to give him a hand.
However, when the husband sees her coming he gets angry and yells at her ‘What are you doing, I have been doing this garden man and boy for years I do not need your help’. So his wife goes back inside.
About an hour later he comes in absolutely exhausted, just manages to take off his outer gear and collapses on the sofa and goes to sleep.
Next morning he gets his gardening togs on again and out he goes.
His wife, not able to watch him struggle goes upstairs to the other side of the house so she cannot watch.
About twenty minutes later she hears the door to the garden slam and he calls out ‘Where are you?’ and upon answering she hears heavy feet struggling up the stairs one by one – muddy wellington boots still on – and into the room he comes and says ‘What is wrong with you, you know I am struggling these days, why didn’t you offer to come out and help me?’
So whatever you do it can be wrong.
Polio survivors can spend years in denial of their problems. This is harder if they have been incorrectly assessed – like many of us have – and told there is nothing or little wrong with them for years.
Having pushed ourselves for years to succeed the idea of having to return to or start using new aids and equipment and help from another person that might make our lives easier is horrendous. It seems like a downward step.
Once we learn more about PPS and how we can improve the quality of our lives and how much more we can manage by doing this then we are on the right road.
How you can help
I have to thank my daughter for bringing to my attention how I had been missing how much she and her brother were struggling to cope with my PPS. This is what I learned.
We must realise that these new problems do not just impact on our lives but also those of our family and friends. You are also finding it difficult to cope and as you can see from the story above whatever you say or do we could think is wrong despite the fact that you are really trying to help.
What is easier for us is not to have the job taken over from us but given some help to do some of the task so that we are still able to do what we can.
I suggest that you pick a time when we are not overtired and in pain and start by possibly saying ‘You know you said you would like to do ‘x’ if you fancy some company I have some free time on ‘y’ and we could do it together. I don’t guarantee that this will work but it might.
For aids and assistive devices it needs to be more of a ‘fun’ time like it would be if a few of you tried hats on together. It is much easier if there is more than one person with similar needs and local and national exhibitions are really good because you are not in the minority and can try the items without feeling embarrassed. It is good if you can try things as well.
The other, not as easy, but important issue is to find time when you can both talk about how you feel about what is happening and if it goes ok then suggest that you do the same with other members of the family and friends.
How to explain our issues to others
It is much better for us if we can write a short piece like ‘I had polio in my earlier life and up till now have managed so many things but there is a late stage to this condition where tasks become a little harder to achieve. It has been hard for me to accept that I have reached the stage of having to start using or reusing aids and assistive devices. I realise that I may have to change when I do some tasks to fit in with when you can help me. Would it be alright if I let you know what I need help with and then you can tell me if and when you can help.’
If anyone reading this has any information, suggestions or anecdotes that might help others in this situation then please contact us.