Hi @Lindsay,
It’s really sad that you feel the need to hide your diagnosis and medical history if you were to be admitted to hospital. I’d obviously advise against this, however, if you need to speak to someone about your concerns, you are always welcome to contact out helpline team. They’d be more than happy to help and give you the necessary information you need.
Give us a call on 0808 800 0303 or email us at [email protected].
Best wishes,
Reah
Hi Reah,
Lindsay is not on her own, a lot of people with Parkinson’s and any number of other conditions are thinking the same thing. I have contacted the helpline in respect of this issue but haven’t received any reply yet although in all fairness the helpline will be very busy and it hasn’t been five days yet so who knows. J 
My fan club starts here! Seriously I write how I see it and I see it from both sides. It’s no secret and I don’t mention much about me in my replies but my views are borne out of life long contact with elderly and disabled in various ways finally resulting in training as a mature student and 18 years working as an occupational therapist, two years of which were with a formal diagnosis of Parkinson’s. The way I deal with it is partly my own personality type but obviously heavily influenced by my experiences. My big soap box thing is the way everybody is described as suffering with whatever. I do not suffer with it and nobody but me can say. If others need a descriptor just say I have, I live with, I was diagnosed with or similar a view I held long before my own diagnosis. Words are often used with little thought but that’s another subject entirely as is my pre OT work history. I try never to forget that this person with x is a person with a life and history just as I have. All I write stems from this background.
Thanks Jackson,
I don’t think it is ‘sad’ to hide my diagnosis. I’ve been doing that very successfully for seven years. I held down a very stressful active job for five of them, and as far as I know no one guessed.
Retired now, but still very active, as I believe it is the best way to keep healthy.
I heard about the situation in Italy ‘difficult choices’ and sadly I’ve rather not be seen as in a ‘category’.
Unfortunately, as ones family will not be on hand to vouch for you, we are dependant on our medical notes anyway.
My point was that this is such a boutique illness it is not appropriate to give us all the same label.
You are quite right Lindsay labels are something that can categorise a person and I applaud you for deciding how you want to live with your PD and having the courage of your convictions and good luck to you If that’s what you choose to continue to do. However just to play devil’s advocate here and not to be critical of you at all but simply as food for thought
Hi @Jackson,
Thanks for sharing your thoughts with me.
As you suspected, our helpline is busier than normal, however, you should receive a response from them soon. I realise that quite a lot of pwp share the same sentiment as you and Lindsey and I will share this with my wider team to make them aware of it. I will share any advice I receive with the community, in the meantime, please try and remain calm (I know it’s easier said than done) and know that we are here to support you in the best way we can.
Best wishes,
Reah
Hi Tot,
Thanks for your reply. At first my PD was hardly noticeable. I told family and close friends. As we all know, this is very difficult. I then noticed I was being watched, and this made me uncomfortable. I then realised that I didn’t need to tell everyone - especially work colleagues although my line manager was aware and supportive.
It was nice to carry on without my label. In time, it will be obvious to people exactly what I have and indeed now I am happy to tell people if I feel comfortable to tell them.
I do appreciate that unless we own up to this condition people will not appreciate that it is not always an ‘old people’ illness.
I am lucky I am a ‘slow burn’ and still able to do most things, but it is this reason I didn’t feel the need to let my work colleagues know.
I still have a issue with being labelled ‘vulnerable’. We all have different health issues with our condition, and I want to be seen as a fit and healthy 61 year old, who happens to have Parkinson’s.
Parkinson’s UK does state “But they do have an increased risk of severe illness if they do get coronavirus”. What is the evidence for this? How is this helpful to us? Should this not state “if you have swallowing or breathing problems, you may have an increased risk off severe illness”.
Have absolutely no problem with anything you write. You’ve decided how you want to manage your condition as have I and your reasoning is as valid as mine. We are not as far apart as may seem on the surface ie each in our own way not letting others judge or label us if you like, by our condition. As to lack of clarity around advice generally and at present in particular, I listen to what is said then do what feels right for me set in the context of the bigger picture. If I am honest with and true to myself I believe I will have done the best I can and that’s all I can do.
I guess one of the risk factors for people with Parkinson’s disease is that of their medication. I agree it should be more of an individual issue on self isolation and distancing. This should include medication. Prior to this outbreak Parkinson’s Uk were running a campaign for getting medication on time in hospitals - 50% of patients with PD say they did not get their meds on time.
This campaign has been running since 2006.
Without offending NHS staff who are doing a fantastic job, and are extremely dangerously busy at the moment, PD medication on time will be a greater struggle. Stopping medication abruptly is dangerous enough, but trying to recover from such a disease as Covid 19 without on time medication, I am sure would seriously hinder the situation. Never mind the complications if one was ventilated.
I know my PD does not increase my risk of getting Corvid19 and I would be able to go to work, go shopping etc and do my best to distance myself as does everyone else. But I would like to decrease my risk of getting it. Unfortunately I have been looking after my wife for the last two weeks who is now recovering from Coronavirus, so I am probably not in the best of environments! But my fear is not just to get the disease (most people are NOT admitted to hospital), but if I am scared of my chances of recovery will be decreased if I do not get my medication on time so that I am fully able to fight. I do not know if my breathing ability or swallow will be affected if I don’t take my medication either. Hopefully I won’t find out.
So I don’t feel I am vulnerable as such, but could become very vulnerable if I get serious symptoms of Covid 19.
Please remember that most people who get Coronavirus do not get serious symptoms and to help stop spreading this horrible disease by keeping your distance. Everyone with PD is different, be mindful and take care.
Support all key services who are keeping us safe and well.
Forest
As promised, I raised your concerns with my wider team and they’ve asked me to share the following information:
Anyone that is being admitted to hospital should absolutely never ‘hide’ their diagnosis of Parkinson’s. That could cause major additional health problems if medication for Parkinson’s was stopped (for clarity, missing a dose or two is always fine, but the longer the person who needs such treatment has it stopped, abruptly as could happen by ‘hiding’ the diagnosis (and therefore, presumably, also hiding the use of the medication for it) the greater the risk of complications.
Quite simply put; tell the truth, just exactly along the lines said in the postings: eg. “I have mild Parkinson’s and it hardly causes me any trouble. Or it causes me a tremor in my right arm which is annoying but I manage everything.” Doctors know that people with Parkinson’s can live decades and manage a good quality life. There is, in reality, no ‘fine dividing line’ comparing a person with Parkinson’s with someone otherwise the same, and deciding about ventilator use or not. We are not expecting to get anywhere close to that at all, in the UK NHS system, which is gearing up with the capacity and the ventilator manufacture (and other ways to deliver oxygen like the CPAP machines mentioned on the news, which are great for certain people with breathing troubles - ie. they are not a ‘poor second choice’ but a better choice for some people).
It’s also worth noting that the initial NICE guideline on critical care has been updated to reflect concerns that the frailty scale could disadvantage people when decisions were being made about admission to critical care. This article gives a little more info https://www.nice.org.uk/news/article/nice-updates-rapid-covid-19-guideline-on-critical-care
NICE is planning to review and possibly update this guideline each week, so we can feed in concerns if required.
I hope the above information is helpful.
Best wishes,
Reah
Hi Reah,
Thank you so much for getting back to us with this information. It’s really clear and it does help : -) I know people with PD (and other conditions) who are taking all sorts of drastic and unsustainable action due to things they have read in the media about the impact of pre-existing medical conditions on healthcare decision making so I can point them to a reliable source of information and at least they can be sure that they will be evaluated as an individual. Nobody can expect any guarantees in the current situation but it’s good to have a balanced view. Thanks again. Jx
Hi @Jackson,
You’re welcome. 
You’re absolutely right, it really is good to get a balanced view on things and there is so much being reported in the media right now, it can have a negative impact on your mental health.
Glad we could help you gain some perspective.
Best wishes,
Reah
Great point .
Just highlighting what Jackson said so eloquently about the risks for PWPs.
Is there any chance of an assessment (either from the NHS or from PDUK)of the increased risk of ‘symptom severity’ should we catch it. Should a 50 year old with no swallowing or breathing problems be just as vigilant as an 80 year old with those issues.
Its affecting my mental health(my symptoms have doubled at least) knowing that I am in the 'vulnerable ’ middle category of risk and I am guessing i’m not the only one. If we had a more graded analysis it would help in dealing with the risk both practically and emotionally.
Thanks to Jackson for putting that down so well.
thanks Ojala(daft username I know …aka Andy)
Hi Andy,
I inadvertently named myself after a dead family pet! I don’t know why finding a username is so hard but it really is 
The link at the bottom of this post should take you to a document from the Association of British Neurologists website. It was last updated on the 9th of April and it quite clearly states that:
‘Patients with conditions that do not affect their swallowing or breathing muscles and in whom the immune system is working normally are not considered to be at increased risk from COVID-19. Milder or moderate forms of many of the commoner neurological disorders, such as Parkinson’s disease, multiple sclerosis, epilepsy are not currently considered to confer increased risk, so long as breathing and swallowing muscles are functioning well’.
I think the problem lies in the vast variation and severity of symptoms in people who have Parkinson’s Disease along with the lack of knowledge of this condition but I agree that information could still be clearer. I don’t understand if I’m considered to be at risk of complications because of my Parkinson’s or because of factors relating to medication management in hospital or because of other issues in relation to treatment.
Having way too much time by myself at the moment, I have written to anybody I can think of who might be able to answer my unanswered queries in relation to this issue. The Helpline have been great in answering anything that they can answer and signposting me to other sources for anything that they are unable to answer so I will let you know if anybody gets back to me. I would have to say that there doesn’t seem to be great enthusiasm for doing so at the moment but time is one thing that I definitely have so I will wait and see.
I still maintain that we need to be fully and clearly informed of the big picture in order to understand our own positions and then we can make our own choices and decisions accordingly.
I know what you mean about stress and anxiety and it’s impact on symptoms :-S. I’m going out for a bike ride everyday now because it’s quite simply a choice between getting some exercise and maintaining my sanity - even though I live in a busy city- or staying in and driving myself quietly dotty. Take care. Jx
I am alarmed by your statement that you have told your family not to mention your PD if you are hospitalised, since you also state that you are on Sinemet. You are much more likely to die in hospital if you are not given your PD drugs, and it would be very inadvisable to try to hide your PD.
Hello Jane,
Thank you for your comments. I think my point was that I would rather be treated for Covid19 than be taken off a respirator because I ticked too many boxes. I only take two Sinemet a day - I hadn’t considered they were saving my life. They just stop my arm shaking.
As previously stated, we can’t hide our medical notes. I think I was making a point that there are stages to this illness and we are not all at the severe end of it, and it is important that is recognised.
My father had Parkinson’s. He went into hospital with nothing worse than acute constipation. But an intensive nursing bed could not be found for him and he was put on a general nursing ward, where he was not given his Parkinson’s meds. He became more confused, went into a coma and died. It is called neuroleptic malignant syndrome. I don’t know whether you would be at risk if you are only taking 2 tablets a day, but if I were you I wouldn’t risk it.
Probably not significant but I had a phone consultation with the Parkinson’s Nurse today and she said that in our area not a single Parkinson’s patient has been diagnosed with Covid-19, which is statistically very surprising. She was speculating that maybe either PD or medication for it might actually protect against the virus. Who knows!
So I’ve asked lots of questions and written lots of emails in a bid to try and get some clear information regarding risk factors, COVID-19 and Parkinson’s Disease.
I’ve read through any number of websites as well as any replies I have received and this is my personal interpretation, so comes with the huge caution that should you read this, reading through the various documents and advice sites available and coming to your own conclusions is the best way forward, but to me, they ultimately all seem to say the same thing: Parkinson’s is a very individual condition and each person with Parkinson’s may have/ may not have an increased risk of complications from COVID-19 depending on: their age, the existence of any other health conditions, the symptoms they are experiencing, general health issues and activity levels, and any number of other factors.
The best advice I have received is that everybody should be practicing social distancing and exercising extreme caution and this is as true for people with Parkinson’s as it is for everybody else. In terms of taking stricter measures such as total social isolation, then it’s clear that this is recommended by the Government for anybody in the shielding group, which will include some people with Parkinson’s but not others, and anybody who has COVID-19 or is living with people with it - also as per the Government guidance.
I have been advised in replies that I have received that for everybody else with PD, the best thing to do is to evaluate their own circumstances, risk factors and medical history and take advice from GPs/ Specialist Nurses as to what is recommended for them individually in terms of social isolation. Of course people may feel safer taking this course of action through choice but it seems to me that people choosing to do this are in a different position in terms of accessing support services, though there may be charities and support groups in some areas that people can contact.
Every source that I access also advocates looking out for updates because the advice will change as more information is available and so I have set myself up to receive notifications from a few trustworthy organisations.
This all makes total sense to me and as I am currently still cycling 5 miles+ every day and do not suffer from any other health conditions (that I know of!) or any breathing difficulties associated with Parkinson’s then I will continue to exercise extreme caution and follow all government advice, including social distancing advice, but will not be asking my sister to do my shopping for me because I can’t justify her putting herself at risk when I can find no evidence that she is any less likely than me to experience complications should she get this virus. It’s a personal decision but I do feel that it’s an informed decision.
The information that I cannot find is why the Government’s advice seems to be that all people with Parkinson’s are at an increased risk per se rather than a recommendation that people with Parkinson’s may be at increased risk of complications depending on their individual circumstances, and I can’t find the evidence that they have used to come to their conclusion. Like you, I still don’t understand what the purpose of drawing up a category of ‘vulnerable but not extremely vulnerable’ people was because the reality is that there is no supermarket scheme or National Health Service scheme to help people in this category so I have no idea what purpose it serves and that leaves me wondering about treatment options. I have asked this question and have been advised that everybody will be treated as an individual but I cannot find any real clear information on Government, NHS, PHE or NICE websites and neither can I find any information for the general public on this issue - or any commitment to providing such information - which continues to concern me.
Hmmmmm, obsessive behaviour or understandable concern? I really don’t know 
Anyway, just some personal reflections. In the end we all have to find a way forward that we can manage both physically and emotionally - easier said than done, but that’s my aim.
Hoping this still finds you well.
Take care. Jx
