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Polio Survivors Network [formerly the Lincolnshire Post Polio Network] provide information as an aide to Health Professionals and Polio Survivors. The Lincolnshire Post Polio Library contains over 100 full text medical articles.
Each article is endorsed with the following text:-
People who had polio and are experiencing new symptoms need to be assessed by medical
professionals who are experienced in Post-
Polio and Post Polio Syndrome -
PatientPlus article on Post Polio Syndrome
This article provides a comprehensive overview and contains references to our work.
[http://www.patient.co.uk/doctor/Post-
Assessing a Polio Survivor
Polio Survivors are reported to be strong willed and determined folks who have got on with their lives achieving as highly as they can despite their level of polio damage. The last place a polio survivor with new medical problems wants to be is in a doctors office. However, it is important to note that to be in your office they are likely to have been experiencing symptoms over a long time and they are reluctant to admit that actions of daily living have become harder. As actions of daily living become more difficult they adapt how they do an action and it becomes their new norm. Often they do not notice or don’t want to accept that this is happening.
To assist Polio Survivors to ‘see’ the changes in black and white [although this is often a difficult experience] we suggest that they make up a file of information on their lives. To assist them with this we have formulated a Self Assessment Tool called ‘My Polio Life’. We do not advocate their bringing the whole file to the appointment but pick from it the important points relevant to this appointment and collate this on one sheet of paper.
Due to the decreasing number of facts taught by Colleges of Medicine in the decades since the success of the Polio Vaccine April 1955 it is often not realised that many Polio Survivors recover to what appears to be a high level. Many have been told or believe that because of this they must have had a mild dose.
A slide used in our presentations demonstrates this. We suggest that Polio Survivors therefore provide a couple of photographs demonstrating their highest level of ability.
How well some Polio survivors recovered from paralysis
Help polio survivors to tell it like it really is by changing the way you ask questions from ‘can’ to ‘how’. For example, ‘Can you get up a flight of stairs?’ and most will likely reply ‘Yes’. However if you ask ‘How do you get up a flight of stairs?’ they will explain how they do this action, which could be ‘I go up backwards sitting on my bottom and pushing myself up with my arms’.
Polio Survivors across the world are being recorded as having issues with weakness
and functional decline in areas of their bodies they knew were affected and also
areas they believed were uninvolved by the original infection.
Post Polio Syndrome.
Single Action Manual Muscle testing can be unreliable because it is not testing the length of time that action can be sustained, or how often the action can be repeated or how that muscle works as part of a pattern of movement.
We respectfully suggest that when testing muscle ability to ask the polio survivor what change has their been to the way they are now having to do actions of daily living now compared to how they did this before their new problems. If possible a demonstration of how they do the action now will show unexpected muscles working. E.g. Getting up off the floor and using hamstrings and back extensors.
Polio Survivors being tested for reported swallowing issues with a single ‘Say Ah’, have shown no issues., However, if you ask them to repeat this a few times the weakness of the palatal muscles has then been demonstrated.
Polio Survivors reporting issues with sleeping and breathing at night are being asked to repeat each Lung Function Test three times to the same level, but as they have fatigue told to rest for as long as they need to between repeats of the action. The result sheet is then most often sent to the Consultant with only the highest result for each test recorded without the lengths of time each patient had to rest to manage this level. The Consultant, not having witnessed the testing, may believe from the figures that their issues are not as bad as reported.
If anyone reading this has any information, suggestions or anecdotes that might help others in this situation then please contact us.
