Is post Polio Syndrome Inevitable?
Posted , 5 users are following.
Hello
I had paralytic polio in 1950 at the age of 2.5. All four limbs were paralysed, but breathing was unaffected.
I was fortunate in that I made a full recovery with no obvious problems other than possibly flat feet and bed wetting. The latter could have been due to the fact that I was hospitalised for approximately 6 months, or some affect on bladder control.
In my late teenage years I engaged in a short period of weight training and developed a fairly good physique with good strength that has remained into my senior years.
I have just attained 70 years and still have very good mobility and strength, with only very minor intermittent aches and pains. I can still run up multipe flights of stairs and lift fairly heavy items etc.
Approximately 7 years ago I developed an interimttent heart arrhythmia. At the time I was diagnosed with atrial tachycardia and prescribed Metoprolol for life. I read about this drug and weaned myself of it within about 6 months after first taking it.
I am in good health and have never smoked and only have about 4 units of wine per week, so could notput this down to lifestyle. The arrhythmia recurrs from time to time so I decided to check on whether there was a link with polio. It seems there could be, but does not seem absolutely definitive.
I was also surprised and a little disconcerted to find that PPS could occur as much as 70 years after the initial illness.
Is PPS inevitable if you have had paralytic polio? If not what is the percentage of those that remain absolutely free from PPS?
0 likes, 6 replies
richard04103 John1066
Posted
No. PPS is not inevitable, but more people are at risk than was previously thought. If you contact the Polio Survivors Association http://www.poliosurvivorsnetwork.org.uk/ they can send additional information to you.
John1066 richard04103
Posted
Many thanks for the url.
vanora69082 John1066
Posted
I read your post with interest especially regarding how you managed to wean yourself off your heart medication.
I also had Polio aged 2, affecting all 4 limbs and one year ago developed atrial fibrillation for which I was presribed Bisoprolol apparently for life?
Could you give me some more details on how you weaned yourself off the medication as I would like to do the same.
John1066 vanora69082
Posted
Thanks for your reply.
I provide the following information with advised caution, because my situation may not be the same as yours or that of anyone else.
When I was admitted to A&E with erratic and missed heart beats the team on duty led by a non specialist consultant initially diagnosed atrial fibrillation. She wanted to put me on Warfarin which I declined. I won't go into my reasons. I accepted the Metoprolol and a daily 75mg aspirin However, I was later referred to two different cardiac specialists and was diagnosed as having atrial tachycardia.
I read up on Metoprolol and discovered that it can actually induce arrhythmia with other significant side effects. I hate taking any form of medication because there are usually side effects that can add to your health problem(s). I also have a healthy cynicism about the pharmaceutical industries. I therefore gradually reduced the physical size of the Metoprolol pill over a number of weeks. I found that my arrhythmia was gradually abating with this approach as well. I don't know if there was a correlation.
I consulted a GP and said that I no longer wanted totake the Metoprolol but that I would adopt a pill in pocket approach if and when the arrhythmia returned. This was agreed, but in the event I have had recurrences but never took theMetoprolol again. I also stopped the aspirin because it was affecting my stomach. An endoscopy showed that I had small bleeding patches.
I am currently on no medication whatsoever and have not been for a number of years. Instead I take 500mgs twice a day of slow release vitamin C with bioflavanoids. This was mentioned as working for some people on a website and it seems to work for me. I still get an arrhythmia on occasion, but it is usually short lived. I also take magnesium citrate from time to time. I eat bananas for the potassium, and I take 5000ius daily of a high quality Vitamin D3 throughout the winter months. I have my blood tested about every 2 years via Birmingham Hospital to ascertain my Vitamin D3 levels. I also take a daiy multi vitamin with minerals excluding iron. I also try to stay hydrated and get exercise by walking, or cycling on an exercise bike.
I drink only about 4 units of wine a week, sometimes less, and have never smoked.
My BMI is about 25.6.
The foregoing works for me and if you have been on the Afib site you can see that there are a variety of regimes that seem to work for others. It may be due to a placebo effect, who knows, but I do get compliments on how well I look.
However, I do wish to emphasise that Atrial Fibrillation is potentially problematic so don't just think that my regime is the panacea for you. You really have to do your research very thoroughly, cautiously, and carefully.
I am a great believer in adopting a non medicated approach to health problems wherever possible. I always try to undertake my own research.
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lesley29707 John1066
Posted
I myself am a clinical hypnotherapist, semi retired and now 72 years of age and I have always been a believer in mind over matter, and thought I was doing brilliantly, but getting weaker and becoming apathetic. It wasn't until I spotted the book 'The Polio Paradox@ that gave me so many answers and I realised that my dogged determination would probably have crippled me if I had carried on overriding the pain. I realised that I had to take on board being 'disabled' and slowing down and asking for help or paying someone to do the things that I loved and was proud of doing. The most important thing is Pacing yourself. Do a task and as soon as you begin to get tired, stop, take a note of the time it took to get tired or painful and the next time round, if it took 10 mins to get tired etc., then do a task for only 5 mins and rest again. It really does work, it may be frustrating but at least you wont burn out your body before time.
The most frustrating thing is trying to work out whether any health problem is due to polio and this where it can become daunting but I can only advise you to read up as much as you can and compare notes and do what you feel is right for you. Do read the Polio Paradox though, get it from Amazon and you will find it very helpful. It also has medical notes that you can print out and show it to your doctor or the hospital, as so many people in the medical profession do not have a clue about PPS and it's effects with treatment and medication. I hope this helps a little.
John1066 lesley29707
Posted
Thank you for telling about your experiences.
I did discover about PPS many years ago and have broached the subject with a few GPs over the years. I found that they were 100% in the dark.
I would therefore never link my polio history to any ailment I have had, but rather do my own research for possible links and solutions.
When refreshing my memory concerning polio survivors and general anaesthetics I accidentally came across a brief few words statement about a possible link to the effects of polio on the autonomic system and heart arrhythymia, as well as PPS possibly surfacing even 70years after the initial event. In trying to find additional information I came across this site and thought I would cast a line and see if anyone had any knowledge on these subjects.
I was a little bit disconcerted to read of PPS happening as much as 70 years later. I had done all my reading years ago and had been lulled into a false sense of security by thinking that as nothing had happened by the time I was 50, I was free and clear! Now the sword of Damacles has returned.
Every cloud has a silver lining. My wife has been at me for years to travel more and longer. This has never been my thing, but the above discovery resulted in a mini epiphany. We are going to be travelling much more from now on, much to her delight.
Thanks for the Polio Paradox reference I will have a read of it. Although it mentions medical notes for doctors and hospitals, I have always been very reluctant to print off and produce anything for doctors. My past experiences have never been that positive. I had surgery for gall bladder removal recently and was aware of the potential implications for polio survivors having a general anaesthetic. I printed off just such notes by an American professor of anaestheseology, but could not present them on the day. I could tell that the anaesthetist would not have been receptive. Instead, as part of the pre surgery assessment I resorted to emphasising that I had total limb paralysis due to polio as an infant. It went completely over his head. Not a flicker!
Like many polio survivors, probably you also, I have an A type personality so do find it difficult to rein myself in mentally and physically.
I wish you well.