Parkinson’s & Coronavirus

Really sorry to hear this, it is a total mess because decisions are being made quickly based on very broad categories and I suspect there is a lot of interlinking of policy-making that we don’t understand. And I hate to say it, but I suspect financial considerations will be in the mix in terms of decision making as well. I imagine that to support all the people in the ‘vulnerable’ group - with the very many conditions policy makers decided to include within it without any recognition of the massive variation of experience of people within each category- is not financially viable and therefore we are left with vague and unclear advice much of which many cannot follow due to exactly the type of situation you find yourself in.

I think big questions remain unanswered and this leaves people vulnerable for a number of reasons. I’m still unclear on some pretty big issues:

  • What is the degree of risk of complications faced by people with Parkinson’s who have no history of breathing difficulties?
  • While this potential complication of the condition is an extremely serious concern for those experience it, breathing difficulty is not listed as a key/ defining feature of Parkinson’s in any of the NHS or PUK’s literature. I’ve looked around but am struggling to find any statistics as to the demographic of the Parkinson’s population who experience this complication at any specific time or, in fact, any advice or information sheet on this symptom that we are now all being defined by. I am no medical expert so it’s not that I’m disagreeing, I just don’t understand what I am being told. Is there any information in relation to this subject?
  • Why are we suddenly losing our right to be viewed as individuals?
  • What’s happened to ‘Understanding Parkinson’s’ and the wide range of symptoms, ages, general health and stages of condition that means that each one of us is having our own experience of this condition at any given time?
  • How are people supposed to implement the advice given when they have no financial protection or other support in order to do so?
  • What is the point in central government labelling huge amounts of people as ‘vulnerable’ and then giving them no practical help to implement the advice being handed out?
  • In fact, what exactly is the point/purpose of the ‘vulnerable’, but not ‘very high risk’, category?

What would actually make sense was if decisions were made on a case-by-case basis by GPS and medical practitioners who actually know what they’re talking about but I suspect this would be considered too expensive and unmanageable.

I currently have no breathing issues in relationship to Parkinson’s Disease and although I do have some challenges, I live independently and exercise quite a lot. I don’t feel that I should be on the ‘vulnerable’ list because while I am, I feel that I have to follow advice as best as I can which means that I am shamefully scrambling for online shopping slots while I know that people in much greater need can then not have one - and the irony is that I am more capable of getting a slot than many people who are in need because I am in much better health. I’m not, however, totally sure of the implications or consequences of not following advice because there is so much that I don’t understand about decisions being made.

The guidelines that exist are somewhat meaningless for many, many people in the ‘vulnerable’ but not ‘at high risk’ group. I’ve said this already but I don’t understand the reason for this categorisation if it has no practical impact on people’s ability to look after themselves. The contradictory and unclear information out there is leaving people in complete limbo and I very much feel for you and the position that you are in :frowning: Jx

GP has recorded on my gp records that im advised to stay home snd not goto work so i can print it off and send to boss . So i am being furloughed so get 80% of salary
V relieved

That is really good news, it must be a great relief thank you for the update :slight_smile:
Jx

Jackson expressed fear about treatment options for coronavirus being affected by having the underlying illness of PD. Medical ethics would actually prevent that, but the BMA has now issued specific guidance on ethics, which makes that clear.

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Hi Jane, thank you for posting this - it’s interesting. I really just want to understand the position I’m in in relation to everything that I’m reading in order to get some sense of control over things but it’s really hard to find any clear, open and consistent information. I’ve been reading the official guidance on the NICE website, though I’m trying to reduce looking up information so that I don’t drive myself dotty. Although I’m not in isolation, I might as well be because I live on my own in a city. Driving to a rural area to ‘get out’ is not permitted and you’re not allowed to meet up with people you don’t live with. I do understand the reasons for these measures but it is still tantamount to enforced solitary isolation. I have way too much time on my own with my ‘Parkinson’s brain’ and I’m already fed up with social media. I like researching things but I tend bug people and/or find answers that I don’t like so maybe I need to stop :-s Thanks again. Hope you’re still doing ok. Jx

For myself, I have made the decision that if I get the virus and need hospital treatment to survive, I will refuse it and just ask them to make me comfortable at home. There are a number of reasons for this, but the main one is that with the delights of end-stage PD to look forward to, I think a healthy, younger individual needs a ventilator more than me.

Hi Jane,
Thank you for sharing your thoughts. It’s a tricky conversation to have but I think by shying away from such issues, we give them more power to exert fear over life in the here and now. It’s just a personal viewpoint but in the current situation, I think discussions about end of life care need to be held openly; I am not willing to live whatever life I have left hiding in fear of both an unseen virus and a system that I don’t understand so I need to gain understanding so that I can make decisions and exert a degree of control over my fears.
We both know that everybody will have a different opinion about this depending on their individual belief set and situation and are not trying to impose our own beliefs on anybody - it is such a difficult thing to have to think about.
I would like to write my wishes down for any number of situations I may find myself in, and it may very well be that in certain circumstances, my choice would be the same as yours, but in order to do this I would like clear information so that I can base my decisions on whatever factual knowledge exists .
I’m also trying to gain understanding in case I am put in the awful position of needing to make, or contribute to, a decision on end of life care for somebody close to me.
It is incredibly difficult but more information is needed so that people understand the potential consequences of any decisions they make and at the moment, people are floundering.
Take care. Jx