Yes, there is mention of higher risk with some neurological situations. I’ve found a decent guide here from the Association of British Neurologists.
The link to the original web site is here in case this document is replaced and the PDF link above starts not to work.
A lot of it seems to be related to breathing and swallowing impairments, bulbar function or certain drugs used to treat (for example) epilepsy or immune response. Rather than me try to summarise what is in there, I can only suggest people have a read.
Saturday morning, having a cup of coffee and reading the news. We got 25 cm of snow yesterday and it is minus 17 celsius plus wind today, last Saturday was plus 14, gotta love Canada! Forecast says spring may be coming, mother nature was just teasing us last week! It does make socially isolating a lot easier.
Nice to see some early indication of a positive trend in Europe in the COVID 9 struggle. It is looking like it will be a couple of months for until we get passed this. Trying really hard to “flatten the curve” and not overwhelm the medical system.
Plan for today will be to go for a bike ride on my trainer in the basement, try to talk someone into a game of cribbage and maybe BBQ for supper. I have to remember to give a call to some of my relatives and friends that live alone and see how they are. I’ll challenge everyone to “phone a friend” today and do a little check in. Wishing everyone the best, John.
In the UK the advice is self isolation unless you have a specific illness that makes covid 19 especially dangerous, in which case you have to stay completely “shielded” by staying indoors / in your own property until mid June, so other than isolating, my wife and I have actually enjoyed more walks out (limited to the local area where we live) through this isolation period than we ever manage normally. We are allowed out for up to an hour a day for exercise in the open air, to be taken whilst staying well away (more than 2m) from anyone outside the immediate household.
Spring is a little unseasonably here at the moment – not quite the massive swing you describe – but tomorrow we are forecast maximum of +19°C!!! To the extent that the government here is worried that a number of people will throw away the rules and perhaps travel to “somewhere nice” (national parks, seaside etc.) to enjoy it and undo an amount of progress against the disease. I’ve jet-washed the patio in the garden so we might have a beer in the sunshine if it really does turn out so nice.
The situation in Italy and Spain looks a little encouraging, as you say. The situation in the US looks quite frightening, so anyone in the US “we are very much thinking about you and hoping the best for each of you”. I can only encourage people to heed the isolation / social distancing activity that is going on and may that be the way we can all influence getting ourselves and others through the trial.
Oh, and I managed to have a WhatsApp video conversation with my mother yesterday in which she named to turn the camera round to show us the dog food that she needs for the dog, and turn it back again, and hang up!! Not bad progress for a complete luddite.
I hope everyone is staying safe out there and looking after their health… Out here in Sydney, Australia we have had a growing amount of cases, but ppl such as myself and family have been in lockdown in our homes for weeks and unless it is essential such as medical, food etc we wont go anywhere… I think by doing this we are contributing in slowing the curve and as hard as it is I believe it is highly important to do so… Police are out here fining $1000+ to ppl for taking a drive to get out of the house, not social distancing etc so that indicates how serious the government is taking this pandemic… stay safe and look after yourself and loved ones… God bless!
Sorry about your mood swing weather out in the Peg, John. In southern Ontario we’ve just had about 5 days of glorious sun and temps around 14C. Makes everyone want to get out …into their yards …and do garden work? It’s extra hard staying at home when spring has sprung, but we’re doing our best to stop the spread. My AVM survivor isn’t missing school at all. No classes since March 13 and no chance of going back until May (I predict no sooner than September). The noise and chaos of school are awful for kids with brain injuries. I’m doing my best to help her work through the assignments her teacher has been sending. Take care!
This is a very unique group here with a unique perspective on life during the pandemic. It is interesting to compare and contrast our impressions as we make our way through this crisis.
My life changed drastically over twenty-five years ago when I survived the rupture of my AVM. I was hospitalized for two months followed by months of recovery. I have had to adapt before and sheltering in place does not affect me as much as others. At least at home, I can move about, eat what I want, when I want, work on projects, read, communicate online or by telephone. Netfix was enjoyable last night, watching the last part of HOWARD’s END and then THE KING’s SPEECH. I miss my hula class, volunteering at the animal shelter, and the friends I’ve met there. Most troubling is not being able to visit with my elderly mother, who lives only three blocks away. But, it must be.
I will keep you all in my thoughts as we move forward toward better days,
Lifeisgood
It’s going to be unusual but I hope a good time of reflection on what matters and what doesn’t.
I’m also more confident we can see some levelling off or reduction in new cases of the lurgy in various European countries, which I think should give us hope that there is a set of strategies out there that will slow this thing down and maybe stop it.
The US seems to be in the storm at the moment but I hope others can show you there is some light at the other side.
Back at ya Richard and to everyone. Hopefully there is some relaxation and relief over the weekend. I do anticipate some difficult days ahead for Canada and our friends to the south. Wishing everyone the best! Take Care, John.
This appears to be genuine. The SameYou web site links to the same place but we need to check that Ben’s Friends are ok with this. In general, we do not support fundraising except for those charities nominated by BF.
Note that the offer of virtual dinner expired on 9 April.
I’m in NY. I’m a spinal AVM patient. I have some (but not all repeat of symptoms) I had a spinal angio in Feb and had heart issues in mar. The angio looked pretty good. I got a pacemaker.
Towards the end of march I got COVID-19. I had flu like symptoms and one evening a week+ in I had hives. It was terrible, but I guess my immune system reacting.
I am Nathalie in UK and I have a pelvic AVM.
Just thought I would share some positive covid-19 news here.
My 82 year old father in law, who has had a couple of strokes including one 3 years ago who left him disabled, is coming out of hospital next week, He tested positive for Covid 19. He didn’t have the usual symptoms (no fever just hot flushes and no cough) so paramedics didn’t think he had it. He has high blood pressure and heart issues, when he was hospitalised he was extremely weak, not eating / drinking and barely conscious and possibly was having seizures. He has had some seizures in hospital for definite and was on an antibiotic drip and oxygen for 3 weeks. He is now recovered enough to leave hospital and will continue his recovery at home
My 81 year old mother in law with chronic lung disease, was not tested but was told by doctor that she most likely had it too as she cared for him. She also only had mild symptoms: cough, loss of taste and smell, tiredness and strong headaches, no temperature. She continued her treatment which involves tablets to dry mucus and took amoxicillin as soon as she developed symptoms ( she has two weeks worth at home prescribe by doctors in case she gets a cold to prevent her getting pneumonia).
I fell ill with similar symptoms at the same time they did but again was not tested. I am a 46 year old pelvic AVM patient. I had mild symptoms : cough, 3 days of temperature and lots of hot flushes, tiredness, mild loss of taste, vomiting, two days of headaches. It took me 3-4 weeks to start feeling back to normal but really I can’t complain as I was never in bed incapable of moving (like my sister in France) and, frankly, I had worse flu. The only thing is, aside from my father in law, it took me longer than everybody else to shift it.
All in all we have been pretty lucky but I hope you find comfort and reassurance in my family’s experience. Lots of medical conditions in which you might recognise yourselves and everybody recovered.
Thats great news to hear elderly doing well contrary to the media headlines… Im glad you are doing better also… I hope everyone is doing good everywhere and we beat this thing once and for all… God bless!
Anybody know if there have been any information regarding the recent updates about covid-19 causing neurovascular problems and whether or not people who have had AVMs should be of additional concern? Been looking at WHO and CDC, but details are hard to come by.
I don’t know that it causes any neurovascular issues but certainly if you have neurovascular issues, those can aggravate covid 19. See this earlier post:
Hi, my name is Heather and I live in San Diego, California. I had a Pulmonary AVM that was embolized a year ago and they are currently monitoring another that is too small to be embolized yet. Has anyone heard what the risk might be for Pulmonary AVM patients? I cant get a straight answer out of my doctor.
My understanding is that a reduction in lung function means that coronavirus could more easily take you into difficult territory, so I guess it depends on whether / how much lung function you have as a result of your AVM or the embolisation(s).
I have to agree with your doctor. Coronavirus is brand new and PAVMs are so rare, there probably won’t be people with a PAVM who’ve gone through the virus to know how it affected them, plus, as I say, I expect it will vary from patient to patient, depending on how much impairment you have on your lung function. I do know that people with cystic fibrosis are at an increased risk – perhaps because of having less lung function (but in their case probably also to do with their inability to clear a lung infection).
I’m sure it means you should be extra careful to stay safe and isolate from others. I have various members of my family sheltering from the storm. @Kate_R is my favourite other PAVMer. Kate: have you had specific “shelter!” advice?
Hey - mine is not a pulmonary AVM but nerve damage from my AVM have damaged one of my vocal cords, part of my esophagus, my left hypoglossal nerve (which controls the tongue) and (left side) phrenic nerve which controls half of pretty much anything in the left half of my chest etc.
Basically, my docs said I’m dealing with approximately 1 1/2 lungs because of that. “well, it could be just one.”
My last appt with my pulmonolgist was last fall, so I called him and he said that I have no greater risk of getting CoVid as anyone else, but I have an approximately 20% greater chance that the virus I catch will be nasty.
So, my daughter (heart patient) and I have spent the last 4 week hiding from the virus in my inlaws condo - while they stay in place in Florida.