DH was dx in February 2022 with Parkinson’s or Parkinson’s Plus. His GP prescribed sinemet which he refused to take as he doesn’t have a tremor. His consultant prescribed Rasagiline in March which DH is refusing to take as he doesn’t think he needs it. DH is carrying on working at the same rate and is still doing ridiculous hours of 8am to 9.30 with meal breaks. He has told his immediate family, his 2 best mates, his boss and HR person, the kids and my parents but that is it. He doesn’t want anyone else knowing because he doesn’t want all of the questions, people looking at him etc. It is so hard, I feel like he is in complete denial. I don’t know how I am supposed to deal with it, should I try and chivvy him up or just let him process it all in his own time and hope that he will change his mind on the medication and letting folks know? Feel like I am caught between a rock and a hard place - he isn’t easy to live with at the moment and I can’t really speak to anyone about it. So hard
I’m so sorry to hear that you’ve been feeling this way and It’s completely understandable why things have been feeling so hard for you lately - I’m sure many other members can relate to how you’re feeling.
Parkinson’s affects everyone differently and newly diagnosed people process it many different ways which can sometimes be confusing or distressing for their loved ones. We have a carers guide that I’m sure will be of great use to you; this guide looks at issues that may affect you (including what you’ve shared in your post) and it offers practical help and advice, whether you provide care and support for someone who has recently been diagnosed, or someone who has been living with Parkinson’s for a while.
We also have a lot of information for people like yourself caring for someone with Parkinson’s via our website here.(Caring for someone with Parkinson's | Parkinson's UK and a programme called First Steps which is a free programme designed for people recently diagnosed with Parkinson’s - this may be something that you can look into on behalf of your husband.
Lastly; you’re always welcome to contact our helpline service for more support from our advisers on this matter, they’d be more than happy to help you further on this. Please give us a call when you can on 0808 800 0303.
My heart goes out to you, it must feel like you’re caught between the devil and the deep blue sea. Unfortunately I have no easy answers for you, Parkinson’s in many ways is quite a contradictory condition to live with and
,is often described as being individual. By that I mean although there is likely to be common ground the severity, type, coping strategies etc could vary widely amongst any group of PWP (people with Parkinson’s.) This individual response is arguably more apparent in the early days post diagnosis when for many it is a time of confusion, questions, fear and a 1001 other often conflicting emotions.
Whilst it is of no help to you, DH’s reaction is not unusual and will be what it will be. Maybe he is in denial, maybe not, he has chosen to tell a few select people but doesn’t want everyone knowing for the reasons you gave, you say he is refusing to take the prescribed medication which he is entirely within his rights to do but as he seems to be managing his normal routines without the meds, arguably that is the right thing for him at the moment.
I am going to take a leap in the dark here and I apologise if I am not reading the situation very accurately, but I think you might feel a bit easier if you turn things on its head and think about the implications of DH’s diagnosis on you and what you are prepared to accept and do. I will try and make this as clear as I can and will use bullet points that will hopefully help. I will try to put it into a logical order of sorts but hope you will be able to follow it anyway.
1 The decision to tell people or not is an issue all PWP have to address. I have Parkinson’s myself and decided early on to be open about it. To me it was simply a fact so why deny it and I find it is easier if people know, because at the same time I can also let it be known how I want to manage it. Family and friends and work colleagues etc have learnt to sit on their hands and accept I will ask for help if needed, accept I don’t want their pity - I don’t feel sorry for myself and don’t need anyone to feel sorry for me. It quite quickly became old news. It works for me but it is not everyone’s way and if that is not what DH is ready to do up to a point you have to respect that
2 The reason I say up to a point is that most people who choose not to tell of their diagnosis are probably not being 100% correct if they think no-one hasn’t noticed something isn’t up, even if they don’t know what. You probably know that a good percentage of communication is not speech but the non verbal cues that go with it. The non verbal cues are virtually impossible to stop altogether and frequently leak out even if nothing is said verbally. This could put you in a difficult position if someone suspects something - do you go along with the denial, effectively colluding in the lie or do you for example decide that’s not for you. That you will keep his secret until someone asks but at that point explain the situation. It is a hard thing to decide but I think you need to be clear about what you are comfortable with. It is DH’s secret not yours unless you choose it to be. If you are not comfortable with that he needs to understand what a difficult and unacceptable position you are being put in and that he doesn’t have the right to assume you can just go along with it.
3 Moving on to meds. This is a massive area for debate with lots of conflicting views about when meds should be started, the side effects etc. I think it is important to understand that for many PWP the nature of the relationship between doctor and patient is a bit different to that we are used to ie you are not well, you go to the doctor who writes a prescription and you follow the directions given. With Parkinson’s options are considered and generally speaking are agreed. My consultant for example will write along the lines of ‘we have agreed a change to the prescription is worth trying….’ Many I think would agree that the time to start meds is when your quality of life is affected. DH at the moment seems to think he can manage without the prescribed meds and maybe he can; it doesn’t necessarily mean he is refusing or going against the doctor’s ‘orders’ in the generally understood meaning of the phrase. It is important that he is comfortable with the decisions he makes.
4 Parkinson’s affects everyone in some way or another be you close family or acquaintance. It is slow moving in most but not static which means decisions made today may need tweaking at some point in the future. PWP have good days and bad days sometimes it even changes during the day, it has a range of non motor symptoms that can be harder to manage than the physical motor ones. It can be challenging and frustrating in the extreme to live with Parkinson’s or live alongside it but it is possible to have a good life for many years. DH has Parkinson’s one way or another he will learn to live with it. In a way the hard decisions will fall to you, what you are prepared to do, how far you go along with something, how much are your own needs being pushed aside and so on. It is my personal belief that the only way to be in your situation is to be honest with yourself and what you think and feel and that DH needs to understand he may be the one with Parkinson’s but it is just as big a deal for you. You may not see it as I do of course and that is perfectly fine but relationships are always a two way street. Parkinson’s shouldn’t change that.
My apologies at going on at such length. I hope at least some of it has been helpful or perhaps given you a different perspective on the situation you find yourself in.
My best wishes to you, it’s not an easy path but it’s not impossible either.
I was in complete denial about my diagnosis at first. And it turned out to be the correct response.
I took my pills, did my hand exercises, posted research articles on this forum, & as time passed I got worse and worse until I had several trips to A&E.
Eventually I found out what it was - an acute condition with similar symptoms to PD. I had a medical procedure to fix it and am now on the mend. Hopeful of a fullish recovery in the next few months.
Wow Lemon, that is a fantastic situation for you to be in. So pleased for you!!!
Thank you Tot, I read your carefully written response and it has taken me some time to digest it. You are (as usual) completely right. I have relaxed a lot more with the feeling that I don’t have to control everything. The more of a step back I have taken, the more I realise that people will see that something is ‘off’ with DH. Whether it be slowness of pace or thinking, to his dropped face when he is tired. It will all come out in time. I am taking the time to look after myself and the kids - we are all in for a long road and going to focus on day to day rather than end game. Thank you again.