PPS Articles

 A friend is a present you give yourself


Robert Louis Stevenson

From time to time we will bring you a different article on Polio and PPS
___________________________________

From the April 2017 meeting

OTHER SYMPTOMS NOT RELATED TO PPS

Ulcerative Colitis

In February 2016 I started with the symptoms of what was later diagnosed as Ulcerative Colitis. I consequently spent 3 weeks in hospital on intravenous antibiotics and steroids.

12 months earlier I had gone through similar symptoms although not as severe as this time.

Ulcerative Colitis is a condition that causes inflammation and ulceration of the inner lining of the colon (the large bowel). In UC, tiny ulcers develop on the surface of the lining and these may bleed.

Ulcerative Colitis is a chronic condition. This means that it is ongoing and lifelong, although you may have periods of good health (remission), as well as times when symptoms are more active (relapses or flare-ups).

Although there has been a lot of research, we still don’t really know what causes Ulcerative Colitis.  However, advances have been made in recent years, particularly in genetics and we now believe that UC is caused by a combination of factors:

- the genes you’re born with

- plus an abnormal reaction of the digestive system to bacteria in the intestine

- along with an unknown 'trigger' that could include viruses, other bacteria, diet, stress, or something else in the environment.

It’s estimated that UC affects about one in every 420 people in the UK (0.23%).

UC is also more common in white people of European descent.

UC tends to develop more frequently in non-smokers and ex-smokers than in smokers – but health professionals strongly advise against smoking as a way of treating Ulcerative Colitis.

On the both occasions I had suffered Colitis I had just given up smoking so I was convinced that had been the cause and so started smoking again. It’s nearly 12 months on now and I still smoke (10 a day) along with the subscribed medication and have had no flare-ups.

Breathing Problems!

Also on 21st April 2016 I saw my Gastroenterology Doctor who in the note to my GP, said, “In clinic, Mr Cook was short of breath and this could be asthma. I would request if you could refer him to Chest Physicians on an urgent basis”.

I was seen by a Doctor who was a specialist in respiratory medicine who came up with some recommendations of which these were included.:-

“Even though his chest X-Ray is normal I will request a scan of his lungs to rule out any subtle diagnosis I may have missed out like scars on his lungs.

I have requested him to push himself as far as his physical limits are concerned and gradually increase his exercise tolerance.

I will refer him to the pulmonary rehab sessions at Failsworth PCC, provided he qualifies for such intervention in spite of his previous Polio”.

I attended the rehab sessions for 6 weeks (twice a week), and have since been included in a gym course as a follow on to the rehab.

This has resulted in me constantly “ooh” and “arrhing” when getting up or sitting down and having difficulty putting my coat on so much so the Wife threatened me if I didn't tell the instructor that I was doing too much.

So problems with Colitis, breathing and exercising.

What has this got to do with Polio?

Well when you consider that the Polio virus multiplies in the gastrointestinal tract before it’s journey to destroy the motor neuron cells, who is to say that it didn't have some effect on the gastrointestinal system.

The Oral cavity, Salivary glands, Oesophagus, Stomach, Small intestine, Large intestine, Liver, Gallbladder and Pancreas all form part of the gastrointestinal tract. Now if these organs were affected by the initial Polio virus we can assume that PPS could also be affecting them today.

Last year the Fellowship issued the results of a survey they conducted on PPS. What were the main findings on how PPS had affected us?

Fatigue, Muscle Weakness, Pain, Cold Intolerance, Sleep Problems

also

Bowel and Urinary Problems
Respiratory

Take a look again at my recent problems.

Nearly half of the PPS sufferers had some sort of bowel or urinary problems and although the survey didn’t state which type of problem, you can assume that Ulcerative Colitis would be one of them. Therefore my Colitis could be down to PPS and the initial virus manifestation in the gut.

New problems with my breathing was put down to asthma or the deconditioning of my body due to the Colitis, however we see from the PPS survey that over 30% of sufferers were experiencing respiratory problems, so maybe my breathing problems are side effects of my PPS.

I was told by my chest consultant to exercise and quote,I have requested him to push himself as far as his physical limits are concerned and gradually increase his exercise tolerance.”

By doing this I found I was getting more pains in my arms and lower back and after reading about the type of exercise PPS sufferers can do I have had to change my exercise programme to compensate for this.

Therefore, I have come to the conclusion that these non PPS related symptoms could after all be attributed to the late effects of polio virus, because they have only started to bother me since I started to feel other symptoms that are attributed to PPS.


Eric Cook

Polio survivor attached to the Manchester Group

Ref source: Crohn’s & Colitis UK. (2013). Ulcerative Colitis. Retrieved 4th April, 2017 from

www.crohnsandcolitis.org.uk




From the March 2017 meeting


Polio - What do we really know about the virus

What is polio? Poliomyelitis is a viral disease. There are three types of poliovirus and many strains of each type. The virus enters through the mouth and multiplies in the throat and gastrointestinal tract, then moves into the bloodstream and is carried to the central nervous system where it replicates and destroys the motor neuron cells. Motor neurons control the muscles for swallowing, circulation, respiration, and the trunk, arms, and legs. Poliovirus is extremely contagious and can pass easily from person to person. The virus typically is found in feces and can be transmitted when people come into contact with infected matter from bowel movements and unknowingly touch the mouth or nose without washing their hands first.

Polio stigma

The polio experience was a difficult one. Polio carried a stigma similar to HIV/AIDS in that others were afraid to associate with children with polio and their households. It was common for polio survivors discharged from the hospital or rehabilitation to be discouraged from talking about what they had experienced. If they were able to pass as non-disabled, polio soon faded from their awareness. Many didn't feel that polio had really affected them very much at all until they developed PPS.


What are the symptoms of polio?

Up to 95 percent of people infected with polio have no symptoms. However, infected persons without symptoms can still spread the virus and cause others to develop polio. About four to five percent of infected people have minor symptoms such as fever, muscle weakness, headache, nausea and vomiting. One to two percent of infected persons develop severe muscle pain and stiffness in the neck and back. Less than one percent of polio cases result in paralysis. The British Polio Fellowship reports that there are approximately 120,000 people in the UK living with the late effects of Polio and Post Polio Syndrome. If we take the 120,000 has being the 5% that had symptoms from minor to sever, that leaves the other 95% approximately 2,400,000 polio survivors who were infected by the virus but showed no symptoms, are living today and could also be affected by PPS to a certain degree.

Acute polio was an extremely painful disease. Along with the pain, the patient would have a high fever and become unable to move parts or all of his or her body. He or she may have developed difficulty in breathing, and even been placed in an iron lung. Children and adults who were hospitalized and contagious were kept in isolation from family, and even when rehabilitating allowed few visitors.

What are the complications associated with polio?

Complications include paralysis, most commonly of the legs. Paralysis of the muscles of breathing and swallowing can be fatal.

Coping with Polio

When it was time to go through rehabilitation, polio survivors were encouraged to work as hard as they could, often pushing themselves past the point of exhaustion to regain as much mobility as possible. They learned to do whatever they could to function in a society that would make no accommodations for their disabilities. Wherever possible they were encouraged to give up braces and crutches as soon as they were able. Essentially, the message was that if they worked hard enough they could be successful at whatever they wanted to accomplish.

Polio survivors often became stubbornly independent because of these experiences. They learned to be self-reliant. They exercised and exercised out of a belief that doing so would allow them to preserve their abilities. For many, PPS has felt like a betrayal, because what was helpful then has turned out to be harmful now.

What is post-polio syndrome (PPS)?

PPS is a condition that affects polio survivors ten to 40 years after recovery from an initial infection. PPS is characterized by further weakening of muscles that were previously affected by the polio infection. Symptoms include fatigue, slowly progressive muscle weakness and deterioration. Joint pain and bone deformities are common. PPS is generally not life-threatening. There is no known cause or effective treatment for PPS.

Websites for PPS information

Below are a few websites that contain more information on PPS much of it is the same on each website.

www.britishpolio.org.uk/polio-and-post-polio-syndrome/post-polio-syndrome/

www.nhs.uk/Conditions/Polio-and-post-polio-syndrome-/Pages/Treatment.aspx

www.mayoclinic.org/diseases-conditions/post-polio-syndrome/basics/definition/con-20021725

www.post-polio.org/edu/pps.html