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Join Assistive Technology For All campaign for AT for all
Want to help us advocate for a national assistive technology program for people with a disability outside the NDIS? There are a number of ways you can get involved.
We are sorry to announce both sessions one at Repat Pool at Daw Park and one at RSB Pool at Gilles Plains
both these pools are now closed until further notice.
We will keep our members informed as soon as we have notice that they are open again.
Apologies for all concerned.
Please find below some information for polio survivors about coronavirus COVID-19, from Post-Polio Health International. The information links to the CDC, but please also keep in touch with local health messages such as those available through the Australian Department of Health: https://www.health.gov.au/…/novel-coronavirus-2019-ncov-hea…
Everyone seems to be talking about, worrying about and asking questions about coronavirus, and that includes polio survivors. As we have seen this is a rapidly evolving situation and what we know today may change next week or next month.
Some facts that are not likely to change are:
Polio and the late effects of polio do not, in themselves, cause immune compromise. Therefore, polio survivors are no more likely to contract a coronavirus infection or develop serious illness from it than people who never had polio!
Most polio survivors in the United States and Canada are over 60 years old, which places us in the “higher risk” category with a greater likelihood of developing severe disease after being infected with the virus than younger people.
Polio survivors who had breathing muscle involvement with their original illness and/or now have respiratory problems of any kind are at “high risk” when they become ill with any respiratory infection, including coronaviruses.
Just as it is for people who never had polio, if a polio survivor has diabetes, heart disease, severe kidney disease, or are immunocompromised due to a medical condition or certain medications, then they are at high risk of developing complications if they contract COVID-19.
What you can do: follow CDC guidelines about infection control—washing hands frequently, disinfecting frequently touched surfaces, covering coughs and sneezes, avoiding large crowds especially in poorly ventilated areas, staying home if you are sick and avoiding non-essential trips, such as long airplane rides or embarking on a cruise ship.
If you do develop cough or fever (temperature over 100.4 degrees F, 38 degrees Celcius), especially if you have had known contact with someone who has coronavirus or has recently been in some of the “coronavirus hot spots,” call your doctor for advice about what to do next. If you have increased trouble breathing, you probably need to be seen by a doctor at a hospital but have someone call ahead so that the emergency room is prepared for your arrival. Likewise, if an ambulance is called to transport you please let them know in advance that you may have coronavirus so they can take appropriate precautions.
For the latest information about the coronavirus, check the CDC’s website at www.cdc.gov/coronavirus/2019-ncov/. If you have any specific health questions about yourself, contact your physician.
Post-Polio Health International
Including International Ventilator Users Network
St. Louis, Missouri
www.post-polio.org
314-534-0475
We received notice that RSB Pool at Gilles Plains has been closed until further notice.
So hydro session on Tuesday at 10:30 till 11:30am will not happen. We will keep you informed when they will commence again.
Cold intolerance is a common symptom amongst polio survivors (29-56% incidence according to Brauer 2011). A related question is whether polio survivors have a lower core body temperature. We don't have an answer for you, but would like to find out! Is your's lower than normal?
Write down your body temperature measurements for 14 days at about the same time each day (set a daily alarm!). Record in degrees Celsius, with any type of thermometer. Submit your list of temperatures to our online form (linked below) once you have your 14 numbers,
(All ages, genders and nationalities of polio survivors are welcome to contribute to this data.)
Read moreAs I have stated in previous Newsletters my health has precluded me from continuing as President of Polio SA. At a recent Committee Meeting Peter Wierenga has agreed to continue as ACTING President until the August Annual General Meeting, so please consider volunteering a little of your time to help this Organisation. Why should I volunteer some time? Well Members of Polio SA have access to massage vouchers, 4 x $40 to assist you getting treatment for aching muscles etc. Also, there are two venues for hydrotherapy sessions, RSB pool Gilles Plains and the Repat pool Daw Park. There are some questions to answer to allow access to the pools, but no one has been refused yet, so if you are interested in either of these offers please contact Polio SA Office. We also keep all our Members up to date through Newsletters and social media sites of Polio SA. These are some of the ways Polio SA is helping its Members but now Polio SA needs some help from our Members to keep looking after the Members.
It is with much sadness that I must report that Polio SA stalwart Mr. Thornton Kowalick passed away in mid-January 2020. Thornton was the caring supportive husband of long time Committee Member Maureen Kowalick, many of you know of Maureen as the very friendly voice at the other end of the Polio SA phone line when you needed vouchers. Our thoughts and Prayers are with you Maureen.
With this I am closing my final “front page”, so I must first thank the Committee for all the support given over the past ten years, especially the extra yard given by Peter Wierenga and Trevor Jessop. The efforts of all have allowed Polio SA to continue to be as successful as it has been in providing services and information to all our financial Members, the new addition of our Community and Membership Officer has made the Executives work load much lighter, thank you Helen.
Farewell and good health to you ALL, see you again soon.
Brett Howard President (retired) Polio SA.
Polio SA Members Christmas Lunch Polio SA Committee and Members enjoyed a Christmas lunch and catch up at Highlander Hotel , Gilles Plains on Tuesday 10th December 2019. A good time was had by all.
Read moreOn the topic of EMG’s identifying where polio affected the body
Question: I got the electrodiagnostic results of my "good" right hand. The doctor said there was evidence of prior, “old” anterior horn cell disease. Does this mean that Polio affected my right arm as well?
Answer: Statistically, the poliovirus affected all of the motor neurons that activate your muscles, even the muscles that seemingly were unaffected. For a limb to be weakened by the poliovirus, let alone paralysed, it had to lose more than 60% of its motor neurons. EMG’s can detect “old” polio damage and the death of motor neurons, which is what the physician meant by “evidence of prior, old anterior horn cell disease.”
Read moreCoronavirus and polio survivors
A recent question by one of our members
Question : If you had a clinician who would speculate, it would be a fantastic read to know whether PPS sufferers would be more affected by the coronavirus.
Answer :Yes vulnerable people at greater risk, as with flu older people are at increased risk. Good idea to maintain very good personal hygiene . Smile and don’t shake hands. Get the flu jab.
Response from Dr Booy infectious disease specialist, Clinical Advisory Group Polio Australia
Other source for more information on coronavirus see links below.
https://www.who.int/docs/default-source/coronaviruse/situation-reports/20200225-sitrep-36-covid-19.pdf? sfvrsn=2791b4e0_2
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses
Special Thanks to Michael Jackson Polio Australia Clinical Health Educator for sourcing information .
Question: I've just read Mia Farrow's PostPolio Letter again, (see letter below) but I still can't get my head around PPS not being progressive. I find that confusing. The alternative is that it is stable and doesn't get worse. I think we have all experienced decline and progressive weakness and pain. Can you explain what you mean please? As it stands, if I give this to any doctor with little or no understanding of PPS, I fear they will immediately hone in on the 'not progressive' and close the door to possible or further decline.
Answer: PPS is the result of overuse and exercise damaging already damaged neurons. There is no "disease" underlying PPS that progresses. PPS symptoms progress if you don't listen to your body and stop activities before your neurons stop you. Of course, after age 60, everyone loses about 1% of motor neurons every year and has lost a greater percentage of brain activating neurons just due to aging. If you start out with only 40% of your motor neurons after polio, losing even a few percent more is going to have some effect on muscle strength. As for doctors homing in on the "not progressive," they should be focusing in on your symptoms, activities and need for assistive devices to prevent, not close the door to, further decline.
The Post-Polio Letter Basic Facts about PPS for Polio Survivors' Doctors, Family & Friends. Dr. Richard L. Bruno, HD, PhD. Director, International Centre for Polio Education
Read more