I joined the forum when my husband was diagnosed with early onset Parkinson’s, but didn’t really post as I was managing quite well after the initial shock.
I have just been struggling lately. We have three children under 11 and my husband doesn’t want anyone to know yet - which I completely respect.
I have just had quite a hard time with homeschooling during lockdown and I am increasingly worried about the future. My husband has been getting worse and I don’t really have anyone to talk to as we are keeping it between us for now.
I love him so much and am trying my very best for him and the children but I just feel so sad about everything at the moment. It is quite hard to keep from our oldest as well and I worry about the inevitable discussion. I feel I (as the healthy parent) really need to keep everything together but I am increasingly feeling so helpless, unmotivated and useless.
If anyone has any hints on how to manage or positive words, I would love to hear them.
Oh Coffee, I so feel for you - you are carrying an enormous burden.
It makes me, as one who has Parkinson’s, feel guilty that I’ve only myself to think about - for the moment at least…
But I would tell your children. It’s amazing how kind children can be. My 7 year old grandson is so considerate, although, obviously, he doesn’t understand everything about the condition.
I’m sure others will have more profound advice, but I just wanted you to know that I’m thinking about you. As you say, you are the ‘healthy adult’, but you need to be kind to yourself and you deserve support.
@Coffee please don’t try to cope any longer on your own. My husband was diagnosed last July at the ripe old age of 44. We have 2 daughters 17 and 20 years old. After the initial shock of the diagnosis we decided that telling family and freinds was a good choice. The girls took it really well and family and freinds knowing have been a great support. Hubby felt relief after he told everyone. I think the thought of telling people was worse than them actually knowing. Having younger kids I’m sure makes it more difficult. Life for us has sort of plodded along as normal with a few adjustments along the way. We have good days and bad days. Having family and freinds knowing really makes life easier. Get in touch with your local parkinson’s nurse. Ours has been lovely and is always just a phone call away if we need to talk about anything. Please take time out for yourself. I know it’s hard and if you are like me there is sometimes a bit of guilt if I take time for me but self care is important too. Its early days for you both but being open and talking about it can make a big difference. I hope things settle soon for you and your family x
Hello Coffee
I note your last post was three years ago, that’s a very long time to be carrying the secret of your husband’s diagnosis because by default it, in respecting his wishes, it has become your secret too. It is no surprise that you feel as you do, he has you for support, but who do you have? That’s not a criticism of your husband at all, as someone with Parkinson’s I think that what when and even if I choose to divulge my diagnosis is my decision to make. I also am aware however that it is a condition that impacts on everyone in some shape or form and that the decision I make will have an impact on them. I also suspect that the secret may not be as secret as you think. They may not be thinking Parkinson’s but I wouldn’t be surprised if at least some of the people you know don’t suspect something is going on, it is very difficult to hide leakage - little signs and symptoms that suggest all is not well; it might not even be your husband causing concern - whether in private or openly they may well be thinking you look tired, too bright or quick with reassurance all is well etc. I would suggest that as you think your eldest is beginning to suspect it is unlikely some adults whoever they be, haven’t noticed something. I am sorry if that is hard for you to read and believe me, I have every respect for your husband’s decision and your efforts to support that decision but ultimately Parkinson’s is not a condition that can be kept hidden.
I chose to tell people very soon after diagnosis and it’s not easy but once done it quite quickly becomes old news and as suggested by others it is easier when people know. I am always open about having Parkinson’s, it is a complex condition, not well understood and easily misconstrued. On balance I prefer people know the truth and gives me the opportunity to make sure people respect my attitude and approach which is basically, I have it, it’s part of me but it doesn’t define me - I have it, it doesn’t have me. More than a decade on this approach has served me well including a secondary diagnosis of normal pressure hydrocephalus which I approach in exactly the same way. All very well you may be thinking but how do you tell people. With regard to your children I again agree with the comment above about the excellent resources by Parkinson’s UK. Children are remarkably resilient and cope better than adults expect. Other than that I can only tell you what I did which was to tell people individually along the lines of I have some news you probably won’t know what to say, that’s ok, but as and when you want to you can ask whatever you want, that I was ok and then it was up to them. I wrote letters along the same lines to people I wouldn’t see rather than put them in an awkward position in a phone call,. Maybe writing a letter would be something your husband may consider, you could write it together perhaps.
Sorry for the length of my reply and I know it won’t have been an easy read but I think, feeling as you do, things are coming to a head and it’s time to bite the bullet. The strain you are under is huge and you need to look after yourself too, if you get sick what happens then? I send my very best wishes to you and your husband at this difficult time. Take a deep breath, be brave and jump. You will both swim and will both survive and hopefully reach calmer waters once the secret is no more. Good luck
Tot
Hi @Coffee, @Shonab, @Tot, With the country coming out of Lockdown more and more people are going to want to see friends and the secret you both share should now be shared with everyone. Tell your husband that it will benefit you both, as people will want to be there for you as we are on here. Don’t refuse this help take in the way it is given, graciously, there’s no shame in having the disease it is just one of life’s curved balls if you like. Deal with it, as @Tot said, your husband has Parkinsons, it doesn’t have him, stare it down, you’re both better than this, no one with think any the worse of you but get it out there sooner rather than later. Coffee you need time for yourself, you get no reward for being a heroine or saint, you need a life as well as your husband.
You are all being so kind, I have tears in my eyes. Thank you so much for taking the time to reply to me.
It is a difficult secret to have because it alienates me from my friends as I cannot tell them what occupies my thoughts for such a big part of the days.
I think that part of the problem is that my husband is the only income provider, I have been home with the children for 8 years. To further complicate things, he has his own business and I think that he is worried that his customers will not renew their contracts and that he will have difficulty recruiting new customers if this comes out. He is going into the office today and I am terrified for him as he has deteriorated since the start of lockdown.
I have done a degree whilst looking after the children and my plan was to finish it this summer and then look for work. Realistically I don’t know when I will be able to make sufficient money for the family though. It would be a career change but both in the long and short run allow my to control my hours.
An alternative would be to try to get back into my old field. I have signed up for email notifications on new jobs but I worry both about not being able to get any job and about the unavoidably long hours, especially if the children just are told some bad news.
Sadly I just feel so numb and a bit broken at the moment. Lockdown and homeschooling with us all in a small flat has been hard. My husband is so brave and works so hard. I have tried to look after the family and him but at the moment I feel so paralysed. I think we were both in denial and the reality just have hit us (but mainly me). Sometimes I look at my husband and I just want to cry at the unfairness of life.
I think I will try to call Parkinson’s UK as soon as I have a bit of time when nobody is listening. That is probably a really good start. I don’t want my husband (or the children) to know how difficult I find it and the children are all on holiday still. I never have any time alone.
I just wanted to clarify, my husband always dreamt of having his own business and be his own boss (with some people working for him). It is really what he worked so hard for and I spent years supporting him setting it up (he had no income at all for five years and I supported us and later our family and I also put money into the business). He has had so many business obstacles to overcome and he has done so amazingly.
I find it so difficult to start any discussion with him as to whether he will be able to continue this that he has worked so tirelessly for and if so for how long.
At the moment the increasing reality of his progressing illness, the secrecy of it and the uncertainty of everything is just very taxing. I feel so drained. And I need to be there and happy for the children.
Hi Again @Coffee, Let’s get back to basics, if your husband is doing a good job in his business then his customers will renew their contracts with him irrespective of Parky. So long as he doesn’t try to adjust his life to Parky and carries on as he did before, being the best he can every day and being competent in his work ethic. People aren’t stupid and if he tries to pull the wool over their eyes they will see it, if people ask then he has to tell them otherwise he will be living a lie and his credibility will go out of the window. The thing is your husband and yourself need to talk seriously about how he actually feels having Parky, if it is clouding his judgements he needs to come clean.
The disease can come on very slowly and if this is the case then he has no need to worry, he may have to tweak here and there occasionally but that is all. On the Forum you are never alone as has proved by the responses so far, we are all here to support you as well as one another, if you draw comfort from this then you know where to come to if things get any tougher. Take care and stay safe.
Hello again, cruise controller makes some very valid comments Coffee. We on the forum are here to support not criticise but the very fact you have posted as you have when clearly in emotional turmoil suggests to me that in your heart of hearts you know maintaining the status quo isn’t the answer. Just to play devil’s advocate for a minute. You said it is difficult to broach the subject, it might be that your husband would welcome your giving him an opening. He has been carrying his secret a long time and don’t think this means he is ok with it. It would have taken its toll. He may be longing to discuss things with you but doesn’t know how. It may be that in your efforts to respect and protect each other you are creating an ever widening chasm. To be frank, his Parkinson’s does not go away because no-one knows, it doesn’t stop progressing because of the decision for secrecy. I won’t insult your intelligence by saying it will be an easy discussion, you will probably feel quite sick at the thought of opening discussions but to not talk could ultimately prove much more damaging to both home and business life. Your husband may be the one with Parkinson’s but its impact is felt far more widely. You can’t go it alone and neither can he. Putting off the discussion that you know you need to have is not the answer. We’re not here to tell you what to do, that is your decision. You have done remarkably well to carry things this far but you know it’s not working for you now so doing nothing is not the answer. Please for the sake of your own health and that of your family don’t waste any more time agonising and take some action. One of you has to take that first step so that you can all move forward. All the replies are saying much the same. I think we are only saying what you know to be true. The time for honesty was always going to come at some point. I think that time is now and all of us here on the forum will be here for you (and your husband) to help you through - that I can promise you absolutely.
Tot
Hi Coffee - I’ve just read the posts and agree with the suggestions made. I have one of my own - is there any way you can get involved in ‘his’ business instead of your own field? His customers will support him I am sure but your visible support in a business situation would reinforce the positives and might help him continue to function in a business he is proud of. You say he has degenerated during Lockdown - I think everyone has BUT your husband, once back in the saddle, might still be riding high for several years to come. BTW the Wikipedia entry is condescending and ought to be removed - don’t let it be the first port of call for your children - the PUK website is a much better introduction. Good luck for the future, I am sure the children will be supportive of you both.
This! I can’t really talk because I haven’t told everyone in my life yet (in particular extended family) but I have told everyone I see regularly. And I have felt nothing but relief and support from that moment on. Like someone else said, it quickly becomes old news. And if your husband’s business keeps producing products that customers want to buy, they will carry on buying regardless.
