I’ve been trying to understand why those of us living with Parkinson’s are being advised that we are considered, en mass, to be ‘vulnerable’ in terms of the potential for experiencing complications from Coronavirus. As this is such a new virus, there is very little evidence that I can find to explain this but I did listen to the webinar on the Michael J Fox website and the specialists involved were very clear that age seems to be the most significant factor in terms of severity of symptoms along with conditions/treatments leading to significantly compromised immune systems. They also listed diabetes as a risk factor for complications and although I may have dozed through some of the discussion :-S, as far as I could tell, no particular reason was identified for concluding that people with Parkinson’s per se should get more sick with this condition than the general population, although I think there was some mention of people who have Parkinson’s who have symptoms related to swallowing and breathing and this makes sense.
I have just read the information on PUK’s website today which states that people with more advanced Parkinson’s who have associated breathing problems, or people with Parkinson’s at any stage who have associated difficulties with breathing I guess, are considered to be at a higher risk of complications and again, this makes sense, but we are a diverse population and I imagine that a lot of people with Parkinson’s have not developed breathing difficulties at this point in time due to their age or general health or stage of the condition or just the progression of symptoms that they are experiencing.
I don’t wish to take risks and I also don’t wish to over-burden the health system but bearing in mind that Parkinson’s symptoms and the severity of them vary so greatly from person to person before even taking comorbidity / general health and a range of other factors into consideration, it seems that risk should be evaluated on an individual basis rather than being based merely on having the ‘label’.
I want to be able to understand my own position and I want to understand the implications of being labelled as ‘vulnerable’ irrespective of my specific set of symptoms and general health. I don’t currently experience any symptoms in relation to breathing or swallowing and I am still able to do quite a lot of physical exercise; I therefore don’t wish to register as vulnerable with my local supermarket thus taking a potential delivery slot for food away from somebody who has more complex PD symptoms, has more complex health needs relating to another condition or is elderly and is unable to travel independently but I am also concerned that having been given the warning to isolate myself as much as possible, I could be judged very negatively should I continue to go food shopping and then contract the virus and get ill. Unfortunately, in situations such as this individuals, as well as institutions, seem to resort to blame and recrimination very quickly.
I am also seeing fleeting references to ‘difficult decisions’ in terms of treatment options should there be an extreme spike in cases, and there seems to be a general consensus that this is going to happen to a greater or lesser degree at some point. There are references to open and honest conversations with the general public but I can find no honest conversation or easily accessible information. I understand that it is not an easy topic to discuss but I want to understand how such decisions will be made and what factors will be taken into consideration. I want to understand my own situation as well as the situation of people close to me in order that I can inform people around me of my opinions and wishes should I be unfortunate enough to find myself in such a position and also in order that I can make informed decisions on the behalf of others should I find myself in such a difficult position.
Is there anywhere that I can find out any more information on any of these issues? The information that I do have is fairly vague and unclear and doesn’t enable me to make any of the informed decisions that I feel that I need to make.
I also have to say with some degree of irony that having argued for some time against the generic term ‘people affected by Parkinson’s’ being used to describe me as somebody living with Parkinson’s, I note that in relation to the coronavirus crisis, I am now defined as somebody living with Parkinson’s who is likely to have a different experience from friends and family who are affected by it and I’m not sure that I’m altogether reassured by this ;-S; but seriously, when this is all over it would be good to see some consistency in terms of terminology and a reality check about the different experiences different stakeholders experience of Parkinson’s Disease. It’s not about ‘top trumps’, comparing experiences, it is just about recognising that they are different.
I’ll be amazed if anybody reads through my somewhat long and bumbling thought processes, but it makes me feel better having written it down, Jx
I read it all and totally agree.
Thank you for ploughing through it and for getting back to me 
Jx
Totally agree,
I cant go to work whilst all my colleagues are still keeping the school open and working through the Easter holidays.
My main symptom is a tremor, but I cannot work?
Frustrated by the lack of clarity as to why and when I can go back.
Annie
I understand totally what you are saying, it is my husband that has parkinsons although I have a different problem so am in the same position and classed as vulnerable. However the NHS does not have the staff or the facilities to assess everyone separately and the staff and facilities they have are correctly dealing with the virus and really do not need people with any of the problems classed as vulnerable getting out there and possibly catching the virus. Stay in Stay Safe and consider others.
Hi,
Many, many thanks for reading through my rambling meanderings - I’ve never been known to use one word when I can use 100 :-/ Your point is, in many ways, unarguable - the general public are the first line of defence against this illness because as you rightly say, it is up to us to protect healthcare workers by staying in. This applies to everybody regardless of health status - which is kind of my point - why label so many people as ‘more’, but not 'most ', vulnerable when there are no support services available for this group due to the sheer demand for support in some areas of the country? Many people in the ‘normally vulnerable’ caregory have to go out because otherwise they won’t eat :-S But it’s tricky all round and that’s for sure. Jx
Thank you for writing it down! I am not the person with PD, my friend is. I assumed he was more vulnerable, before seeing it written down, because I also assume any long-term illness undermines people’s immune system.
I hadn’t considered that some people with PD have breathing problems. He looks vulnerable to me because he has lost weight through recurring diarrhoea, has lost height through PD and being older. He looks tiny when he’s asleep. I am concerned about the “difficult choices” that might be made if he were ill.
I think you’d be quite lucky to get a delivery slot, I gather allocation is not working very well.
I don’t know where you can get further information, tbh I’ve avoided reading about my condition as I want to limit my anxiety.
Thanks again for writing.
Hi, thank you for your your reply. I am following suit and stopping reading the news more than once a day. I’m just tying myself in knots and I’ve no idea what to think really. I too have been worrying about the references to ‘difficult choices’ but I am getting myself into a state and I can’t manage two more days like this never mind about 12 weeks so I need to do something different.
Take care
Jx
Hi there Jackson how was your fridge soup?! I thought we needed a change from all the risk talk which is heavy going with no answers so just small event from recent life. My neighbour’s flat is directly opposite my own and we both live alone. A couple of weeks ago I had what I thought was a brilliant idea and now during the week we both sit at our respective front doors about 12 for a natter. Brilliant and working well then today my friend sent this picture of ladies in Stockholm. Now my brilliant idea looks like we were copying…or maybe they were copying us. So much for my brilliant but not so unique idea !!
PS We’re not so posh just a chair and cuppa!
Hi Tot
I like your thinking
The fridge soup was ‘interesting’ - though better than the banana scones I have to say - I’m on a mission not to waste any food. I have realised with some degree of embarrassment how guilty I am of being wasteful in my everyday life - handfuls of shower gel, forgetting about food in the fridge and let’s not even talk about toilet paper!
I’m going on a news ‘diet’ before I drive myself bonkers trying to fathom the imponderables, or stressing about the things I have pondered and just don’t like the answers I’ve come up with. I’m also going for a bike ride early this morning before people are up and about. Take care and keep enjoying the social distancing tea meet ups,
Jx
Hi Jackson what a great letter i think you have said every thing that we all would like to know, thanks for speaking up us all but also as individual person.
If you have got PD your immune system is already compromised and consequently you are not in the best condition to fight any threat effectively. PD seldom kills its victims directly. It just renders you too weak to fight off any passing bug that can establish itself in your body. Look no further…
JCPB
Thank you, just trying to get my head round all the facts so good to have as much info as possible I still have to go out to get food wherever the facts are :-S but it’s good to be informed. Thanks again. Jx
Maybe Jackson we need a new thread how to stop driving yourself mad and talk fridge soup, banana scones and doorstep tea etc instead! Enjoy the bike ride
Inspirational as always Tot!
Annie
Well you’ve taken the wind out of my sails - inspirational and me are not words I would think to put together but what a compliment thank you.
Maybe you’re right Tot, you definitely talk sense and nobody is answering questions regarding the point of the status of the moderate or vulnerable risk category anyway :-/ I tried to attach a video link from Parkinson’s UK’s Facebook website. It’s quite interesting in as much as the information is the same as in the British Neurological Association document but it sidesteps issues around the purpose or function of the lesser category of vulnerable people. The video may well be on the website somewhere but I just can’t find it and the link may not work anyway. I would like to have asked a question but I don’t tend to look on Facebook and I didn’t know it was happening. I don’t know - Maybe I’ll just start that new thread you talked about
p.s. I tend agree with AMU - I always find your posts worth reading, so thank you 
I have had PD for seven years. I am 61 years old. I consider myself very fit and healthy, although I do have a tremor and other symptoms which are well(ish) controlled by sinemet. What concerns me is being labelled vulnerable to coronavirus when, in fact, I don’t think I am as vulnerable as me without PD, but perhaps a smoker or someone less active as myself.
I am concerned about ‘difficult decisions’ and have told my family not to mention my PD if I were admitted to hospital for fear I would be judged as less ‘saveable’ than my equal non-pd contemporary, and perhaps miss out on a ventilator. Unfortunately, I haven’t figured out how to hide my medical notes.
I hope we can keep safe at home and avoid putting ourselves in any harm.