Found this on the web, it says it is written by the Association of British Neurologists and it was written very recently so unless I’ve missed something obvious, always possible, it seems to be pretty relevant and I thought it was quite interesting.
Again, I could be wrong, but I interpret this as supporting the need for people with Parkinson’s to be evaluated individually in terms of risk factors for complications from Coronavirus. People with Parkinson’s are listed as having high, medium and low risk of complications from Coronovirus - risk seems to depend on a range of factors and having Parkinson’s in itself does not seem to increase risk of complications; complications seem to be dependent on a range of factors including comorbidities and specific symptoms that we do not all currently experience. It’s just my opinion but I really think we need to be evaluated individually and not evaluated according to the label of 'Parkinson’s Disease '.
According to this, I am at no greater risk of complications than anybody else which means that I should not be using up supermarket home delivery slots and other support services when these are needed by people in a far more vulnerable position than myself. Again, it’s just a personal view but the only way we can collectively support those who are most at risk, make difficult choices and manage our own actions in response to this crisis is to be fully informed.
Thank you for posting this most interesting. People will need to decide how they take the information and how they use it to modify their behaviour within the current restrictions for themselves but my own interpretation pretty much mirrors yours. My own long time use of online deliveries is because I no longer drive, live alone, have some limits to walking distance and cannot carry much weight and locally limits to what is available. In all the needed discussion on the virus it is not much noticed that other factors may be needed to be taken into account as to why priority may be needed ie factors I and many others live with every day that do not disappear because of this dreadful virus.
Hi Tot,
Thank you so much for sharing your thoughts, I am spending way too much with my own at the moment and it is good to hear somebody else’s :-S
Like most people, I have no idea what to think in these strange and unprecedented times but I feel that there is scope for a lot more discussion regarding risk factors and what people are being asked to do and why they are being asked to do it so that people can make well informed decisions. Nobody can guarantee me that If I catch this condition, I won’t end up attending hospital with complications any more than they can guarantee this to anybody else, and that comes with a whole load of different considerations, but I just want as much information as I can get in order that I can make informed decisions on both my own behalf and that of society in general.
Several close family members are having to continue to risk going into work and accept the very real chance of catching this virus from people they are having to come into contact with because they are in key services. They have no special consideration so they are also having to leave work at the end of an incredibly stressful day and then go and join the supermarket queues. They want me to stay in as much as possible in order to leave whatever health services are available to those who have no choice but to risk catching this condition.
On the other hand, my parents are well over 80, they have their own medical needs but are reasonably fit however they are still over 80. Looking at the statistics, they are in one of the highest risk groups in terms of not receiving or not surviving treatment should they get ill however they are clearly not in the ‘most vulnerable’ category because their general health is pretty good. They cannot get an online shopping slot but are simply terrified to go out. I am lucky because I can talk to them via video calls - they have always kept up with technological advances and this is something we already did - but I am shocked by how much they have aged in the last week due to stress and panic and not being able to do all the things that keep them in fairly good health. I am indirectly competing with them for online shopping slots and I feel bad.
I live alone and I live in a densely populated city with many people in need and high levels of identified coronavirus cases. I have spent the last week locked up with my own thoughts and my Parkinson’s and a great deal of fear for the well-being of peope I care deeply about. There are things that I don’t understand and conversations that I am not having but this is just adding to the stress and fear.
I don’t think there are honest conversations being held by the government, or any number of other agencies, with the general public regarding too many aspects of this unimaginable situation that we all find ourselves in and the impact of this is to spread fear and distrust. I’m glad I’m not one of the national decision makers because they’re constantly responding to something which they are poorly equipped to deal with and they would probably like to run a mile from their current responsibilities, but I do blame them for the fog of implications and half-truths and the total lack of sufficient clear information that is so emotionally crippling to so many. We are a society and what one of us does impacts on others.
I would just like some honest conversations and factual information so that I can make decisions that balance my own needs with the needs of society in general including those that I care about - and if I fully understood my position I could make these decisions and pursue actions which would maybe help me to have some control and rationalise the never-ending sense of dread and inertia that I seem to have sunk into thus helping me to spend my days doing something more constructive than lying in bed frantically checking news articles for factual and clear information. :-S
Another interesting post Jackson and again I agree with much of what you say. There are two things which immediately spring to mind while I digest all points you make. First one of the things you gather quite quickly on getting a PD diagnosis is that it is very individual presumably as are other neurological conditions in particular. There are common denominators, patterns and a lot of blurring but nevertheless our individual experiences are unique. The document you posted does seem to acknowledge that where at one point they give the risk for PD as low, medium or high depending on x y and z. Point is the individuality of Parkinsons is generally well known and accepted so lumping everyone together with regard to the virus does or could be seen to counter that. Second we would all like clarity of information, risk and what to do. I think we need to remember however that this is a new virus and all the experts will be on one almighty learning curve. We should of course be thankful for all front line workers, not just the NHS, but any and all. I also think we need to recognise just how much information is available now to inform those decisions that are now being made and have to accept that at the moment this is not complete and clear guidance must be next to impossible. Personally I am in awe at the speed scientists and others have determined as much as they have and they should be recognised for their work every bit as much as any front line worker, for it is from them that tools to overcome the virus will come. Nevertheless it does mean that at this stage we are in a cycle of decisions being made as best they can with information available and very likely to change at short notice; lack of clarity or ambiguity is virtually inevitable in these sorts of circumstances. Unfortunately it leaves you, me and almost everyone carrying some kind of disabling factor in something of a no man’s land, lumped together as one entity with all encompassing umbrella advice ie in our case stay indoors. Good advice trouble is in trying to work out how to manage in the current climate, I found myself questioning, as you have the blanket advice when placed alongside other information. Sorry don’t think I am being very clear here, in simple terms we are being told to stay indoors on the one hand but we are not at any greater risk than others in developing the virus on the other. PD can exacerbate illness, striking with greater severity and quite clearly there is no reason to think this wouldn’t be the case with this virus. All we can do at this stage, with the information currently available is take responsibility for our own decision on risk and what we can do. My concern is that even mild cognitive problems may not give the clarity of thought needed to judge that risk for yourself and others. Hope that makes sense of sorts!
PS am enjoying the debate!
Hi Tot,
Thank you so much for getting back to me. I’m trying to have a day of tidying up and not doing any research or news watching and I’ve also been making bottom of the fridge soup in a bid not to waste any food at all; we’ll see how that turns out!
You make perfect sense and you’re absolutely right, everybody is scrambling around in the fog to try and work this out so I have sympathy with policymakers and I’m grateful for the efforts of organisations like Parkinson’s UK (even though I moan way too much) but I also think that that there needs to be transparency in order to make sure that everybody has enough information to enable them to make informed choices about both their behaviours and future wishes and I’m not sure that this is the case at the moment.
A friend of mine in the all encompassing ‘vulnerable’ category has just been asked to complete a form at work either declaring himself to be vulnerable and wishing to self isolate, and therefore not be in work through personal choice, or declare himself healthy and fit for work. It’s a no-win situation because if he chooses to self isolate without a doctor’s note my understanding is that he will not get company sick pay, but he is vulnerable, and declaring himself otherwise seems to deny him the opportunity to request reasonable adjustments. My feeling is that the company are acting outside the law but how do you find this out at the present time and how on earth do people make such massive decisions in this sort of fog?
It’s all very tricky and I really don’t know the answers.
I’m off to see if I can improve the bottom of the fridge soup and make it actually edible. :-S Jx
Thanks Jackson, I’ve been looking for something authoritative like this.
Hi, I’m still not totally sure of all the implications so I’m viewing everything cautiously but the video chat PUK held yesterday on Facebook was really interesting.
The link is probably on this website somewhere but I can’t find it so I think I’ve included it below - I’m very new to all this social media stuff so I’m not quite sure what I’m doing. I managed to send a virtual wave to a mass of people I hardly knew on Facebook yesterday. Trying to use social media is giving me great stress but there seems to be quite a lot of information on it so I figure I’ll keep trying.
Might be worth a look if you have a little time on your hands 
Take care
Jx