So are we in the category of people who are at risk because we have a chronic condition? Has anyone read anything or been told anything by their doctor?
To my knowledge, SCA itself should not increase any risk for Coronavirus. I have cancelled my trip to Johns Hopkins this March 23rd. because of my age.
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Undernoted is a link to the Ataxia UK website with advice on the virus and Ataxia sufferers. Hopefully this helps.
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Ah yes, that was helpful. Thank you, Craig!
My ataxia symptoms get much worse if I’m fighting off a cold. But I’m not sure if that is dangerous or simply inconvenient.
Let’s just hope none of us get it bad enough where we have to go to the ER. This is not a good time to educate overwhelmed health workers with “this thing I have called ataxia.”
My sister, who works in the medical field, received this at her office. Many medical facilities are receiving this, and it is valid information, unlike any false information going around. You may already be aware of some of this advice but I’m sending it anyway. Please read it and share it. Thank you.
The new Coronavirus may not show signs of infection for many days. How can you know if you are infected? By the time you have fever and/or cough and go to the hospital, the lung is usually 50% fibrosis.
Taiwan experts provide a simple self-check that we can do e very morning: Take a deep breath and hold it for more than 10 seconds . If you do this successfully without coughing, without discomfort, stiffness or tightness, there is no fibrosis in the lungs; it basically indicates no infection. In critical times, please self-check every morning in an environment with clean air.
Serious excellent advice by Japanese doctors treating COVID-19 cases: Everyone should ensure your mouth & throat are moist, never dry. Take a few sips of water every 15 minutes at least. Why? Even if the virus gets into your mouth, drinking water or other liquids will wash them down through your throat and into the stomach. Once there, your stomach acid will kill all the virus. If you don’t drink enough water regularly, the virus can enter your windpipe and then the lungs. That’s very dangerous.
IMPORTANT ANNOUNCEMENT - CORONAVIRUS:
- If you have a runny nose and sputum, you have a common cold.
- Coronavirus pneumonia is a dry cough with no runny nose .
- This new virus is not heat-resistant and will be killed by a temperature of just 26/27 degrees C. (About 77 degrees F.) It hates the Sun.
- If someone sneezes with it, it goes about 10 feet before it drops to the ground and is no longer airborne.
- If it drops on a metal surface it will live for at least 12 hours - so if you come into contact with any metal surface, wash your hands as soon as you can with a bacterial soap.
- On fabric it can survive for 6-12 hours. normal laundry detergent will kill it.
- Drinking warm water is effective for all viruses. Try not to drink liquids with ice.
- Wash your hands frequently as the virus can only live on your hands for 5-10 minutes, but - a lot can happen during that time - you can rub your eyes, pick your nose unwittingly and so on.
- You should also gargle as a preventive measure. A simple solution of salt in warm water will suffice.
10 . Can’t emphasize enough - drink plenty of water!
THE SYMPTOMS:
- It will first infect the throat, so you’ll have a sore throat lasting 3/4 days
- The virus then blends into a nasal fluid that enters the trachea and then the lungs,
causing pneumonia. This takes about 5/6 days further. - With pneumonia comes high fever and difficulty in breathing.
- The nasal congestion is not like the normal kind. You feel like you’re drowning. It’s imperative you then seek immediate attention.
Please send and share this with family and friends. Take care everyone and may the world recover from this Coronavirus soon.
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Thank you very much, Chas521!
So are we in the category of people who are at risk because we have a chronic condition? Has anyone read anything or been told anything by their doctor?
Many people with rare diseases are, scamom. Please read the very important information in our network wide post.
Equipping yourself with the online tool could make a big difference to you as a rare disease patient. It might even be a lifesaver for you or one of your nearest and dearest.
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I just want to emphasize that my post are things to be aware of and common sense such as washing the hands frequently and staying away from crowds also keep your hands away from your face should be practiced all the time. There are no real absolutes at the present time.
I had to take my six year old in yesterday because his nagging cough turned into a quite persistent one. No fever, no other symptoms.
The doctor looked exhausted. The nurse was coughing.
The doctor tested him for strep, and when that was negative, diagnosed him with “walking pneumonia”. He defined that as when you don’t recover from a viral infection and bacteria sets in. Gave him a Z-pak and told me to get him to take it easy for awhile.
My kid asked if it was “granola virus.” Dr said, “Don’t worry about that.”
I have a mild cough as well, no fever. My ataxia symptoms got much worse a couple of days ago and are now normal again.
Who knows.
Sometimes a cough can be from a nasal drip and not from Corona.
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@Scamom have you had a chance to read our network-wide post? Here’s the condensed version:
Many Ben’s Friends members need special care when they become ill, because of their rare condition. If one of us comes down with Covid-19, getting the right care could mean the difference between life and death. That’s why it’s important for you to read this message right to the end.
Your Ben’s Friends team has arranged for our members and their families to join Backpack, a website where they can safely and securely store their medical information, medication lists, records, etc. Then, in the case of a medical emergency, they can easily share the electronic record with medical care providers.
A simple video about how Backpack works can be viewed here.
Getting a Backpack account is free. If you are interested, there is more information and instructions for joining up here.
We think you should do this, for your own safety, as well as for the sake of your family.
Seenie from ModSupport
Absolutely. It could also just be pollen irritating him which then turned into bacteria. We’ll probably never know. The end result is the same. I can’t take him anywhere or let him be around other people.
Received this email today:
From a health care worker
At the request of my wife who is also in healthcare, she asked me to pass this on. Please note that we did not write this but from what we have learned this is the best explanation to what we see happening around us.
“Good evening. If you are tagged in this you are family, or very close to my family. I hope that you will take my words to heart and listen.
I have been in healthcare all my life, and now, over 30 years in I am now an ICU nurse practitioner dealing with critical illness and life support issues. Those of you who have come to me for advice in the past know that I am a straight shooter and i have never (BS’d) you on matters of health. With that in mind…here we go.
COVID19 is here. In America. NOW. Circulating in communities, both detected and undetected. There is no stopping it. COVID19 is a respiratory illness caused by SARS-CoV2, a new (novel is the scientific word) strain of coronavirus that has emerged in humans since December 2019. It is related to the SARS virus that circulated in 2002-3. We got lucky then. Our luck is not so good this time.
It is not the flu. It doesn’t feel like the flu. And it is deadlier than the flu by every measure we have undertaken in affected countries. It will make the rounds and many of us will catch it. Most of us wont have a problem with it however… a significant number of us will get fairly sick and may need hospitalization… of those about half of those hospitalized will likely end up in the ICU and possibly on breathing machines… and of those sickest, there will be deaths. COVID19 at its best is showing a 0.8% mortality rate, which is 3x worse than the flu. That is in countries that have extensive testing and detected both the well AND unwell who are positive for the SARS-CoV2 virus, which causes the COVID19 illness.
There are 350 million folks in america, roughly. People are throwing around this number of “less than one percent”. Well let me tell you: Do the math. A very small percentage of a very large number is STILL a large number.
Symptoms of the Flu involve your body feeling like everything hurts, and you got run over by a mack truck and you just feel awful… in addition to upper respiratory symptoms.
COVID19 is different. You may or may not have a runny nose and fever. A sore throat becomes a major common finding… then it gets in the lungs. A dry, nonproductive cough is common, followed or accompanied by shortness of breath. The shortness of breath is what is triggering hospital visits, and the folks presenting to the hospitals show low oxygen levels (oxygen saturations) and chest imaging typically shows a bilateral diffuse pneumonia (Double pneumonia for the laypeople).
The only proven effective therapies are supportive- Oxygen, and positive pressure ventilation… either with a cpap/bipap machine or with a mechanical ventilator attached to a breathing tube. There is no cure. Your body has to fight it off and it has to run its course. There is no Tamiflu equivalent that works for this. There are some smart medical folks out there spitballing some ideas, but nothing is proven to work. So like every other viral illness you have gotten, you have to ride it out and hope your body is strong enough.
Babies and children are making out fairly Ok… even if they test positive they havent been dying of it in China, in Italy… however healthy young adults, even athletic types, in their 30’s-50’s are coming in very sick and some are dying. From there, the older one is, the higher the hospitalization rates and the mortality rates.
Information out of China shows that it was killing men more than women, but one thing to note is that in China, older men are invariably tobacco smokers. Information out of Italy appears to show the obese are having a worse time with it. In general, blood pressure and diabetes are associated with higher rates of severe illness and death. In particular, people takeing ACE Inhibitors or ARB’s for their blood pressure (the drugs ending in “pril” like lisinopril, or “sartan” like valsartan) seem to be having a worse time. This makes sense since both of these classes of medicine affect cells in the lungs, which SARS CoV2 is thought to also affect.
The biggest danger right now, and the reason why I am writing this, and tagging you… is that this will “explode” here like it has in Italy, Iran and how it did in China.
We only have so many hospital beds. We only have so many ICU beds. We only have so many ventilators… and we only have so many trained staff who can care for the patients. If this blows up massively beyond the ability of the health care system to treat and rescue patients, people who COULD have lived will simply die.
In italy they have an excellent national healthcare system with about 5000 ICU beds, and per capita have more doctors and hospital beds than we do here in the US. Of course, the US is bigger and has more total beds, and ventilators… but again… less per capita. In italy, in Lombardy (the state/province) and in Milan… they have simply run out of ventilators. Doctors are faced with having too many people who cant breathe anymore, and not enough breathing machines to put them on. They are literally deciding on the spot who might live and who will die. They aren’t doing CPR or anything else futile for the COVID patients. They dont have the staff or capacity to do so.
There’s a lot more horrible stuff I could tell you about whats happening, but the short version is this - if we exceed the capacity to manage this, people who should have lived will die.
Which brings us to here, now, in the US. COVID is here. It WILL sweep the nation. There was never anything we could have done to stop it because of the way we live and conduct business. BUT what we have to do is SLOW IT DOWN.
IF we SLOW IT DOWN, so that the number of unwell and critically ill dont explode, and overwhelm the system, then everyone has a fighting chance. Give time for flu season to end and get flu patients out of the hospital. Give time for the first wave of Covid patients to get well enough to get out of the hospital.
So… to SLOW IT DOWN… practice frequent handwashing. Dont touch your face, nose or eyes without washing your hands first. Frequently disinfect common surfaces.
PRACTICE SOCIAL DISTANCING. COVID LOVES A CROWD. If you are gonna spread this disease around lets spread it to only one or two people not 100 people at a time. Stay away from large groups. Lets lay off the rodeos, the ball games, the big parties, the night clubs. Do small groups… or stay home. If you go out, and touch common surfaces, clean your hands before touching your face. On a bus in china, one person gave it to 8 other people, including one who got on 30 mins after the index case left the bus.
If you are sick, stay home. Dont visit other vulnerable folks. If it gets in your household, accept that its there and try not to give it to your aunts, uncles and grandparents. Stay home, dont go to school.
For the elders reading this. I need you to stay home as if your life depends on it. Because it very well does. Your age group is the one having the worst time with this. And if it gets bad, all I can say is that in Italy this week, if you were crashing and over 60, they didn’t even consider offering a vent to them. So please, elders, Stay home, skip church, avoid visiting large numbers of people. Skip the lodge meeting. Skip the casino. And if you are adamant that your wings will not be clipped, then please make sure your will is updated, and you’ve given a copy to your kids.
Now… none of this says “panic” or “buy bottled water and toilet paper”. I’m asking for everyone to take a deep breath and be smart.
Quit caring about your 401k. In a year or two it will be back. The airlines and cruise lines will get bailed out. The economy is going to tank no matter what, so quit worrying about it. Right now the decision is do we want a tanked economy with a low body count or a high body count.
We are all in this together. Wash your hands. Cover your mouth. Practice social distancing. Stay away from large crowds. Be smart. Stay home if sick. Dont hoard or steal medical supplies. We need them desperately at the hospital.”
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AtaxiaUK advice for people with ataxia, and the Corona Virus
https://www.ataxia.org.uk/Handlers/Download.ashx?IDMF=c0e75590-b72d-4293-9e96-2acc3bc327a5
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That was profoundly helpful. Thank you, Beryl!
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