I’m new to the forum. my husband is a doctor, as am I, and he was diagnosed 5-6 years ago. I am hoping to try to connect with other carers of doctors as I think we may share particular issues. My husband is still working in a reduced capacity and he is finding it very difficult if not impossible to come to terms with the diagnosis. He has been very secretive about the diagnosis so only health professionals treating him know, colleagues dont know. Very few of our family know, and I have only been able to tell two of my very closest friends. So I do feel quite unsupported at times. In particular my husband keeps chopping and changing his medication, which I suspect non doctors wouldnt do! This often causes negative consequences and I was wondering if others have experienced the same?
First of all welcome to the forum. Sorry to hear about the situation where you are now.
I am a nurse with Parkinson’s disease since 2019. I could feel a bit of shadow of what you are going through at the moment. When you are in the health profession and becomes a patient is challenging. Same as your husband it was difficult for me as well to tell people. Still only some of my colleagues knows that I have the disease. But as the time progressed I am ready to talk about it and I am organising a teaching sessions for my colleagues about get it on time the PD medications with the intention to spread all around the hospital.
There is a saying …doctors and nurses are the worst patients, As knows about the treatments and medications etc etc …
I would say encourage him to be more positive . Accepting the reality is very difficult especially someone who knows everything about the disease. But thinking about it and keep on worrying about it won’t allow anyone to move forward. Positivity plays a vital role in the situation we are now.
Sorry I am not helping you much , but this is what I am going through as well. Do you have children ? If you have , do they know ? But changing the medications I wouldn’t advice. Hope you will be able to get better advice . Wishing you very best …
Thank you Tinku
Just hearing from someone in a similar situation is a GREAT encouragement. Yes we have young adult children and they now know, but it took 2-3 years for him to tell them and that period was especially difficult, particularly when one of them, who was very concerned about his health, asked me outright whether he had PD and I had to deflect the question, as he wasnt ready to tell her. Yes positivity is very important and I try to encourage it , but I’m not the one living with the difficulties of PD every day and hour. Thank you for taking the time to reply and I wish you well - your teaching sessions sound excellent -well done!
I think me and your husband are on the same boat. I haven’t told my children yet ( they are still young 9 yrs and 13 yrs old ). But I am planning to tell them during the summer holidays. I am already making them aware about the disease as I have involved them in preparing my presentation because they are good in technology. I hope it won’t be that traumatic for them.
My another suggestion is if you look through the parkinson magazine ( part of parkinson’s UK team), there is lots of inspirational stories about how people are coping and overcoming with PD . There is stories about nhs doctors , nurses, GPs etc… it would be worth to encourage him to read those stories .
Does he work in the hospital or gp? If the disease affecting the ability to work , may be needs to have a discussion about changing the hours of the work or changing the department etc whether that would help. I know it’s difficult to make that decision because coming out of your comfort zone is not very easy. But if that can make a difference …
Welcome to the forum.
I’m glad you’ve already received a warm welcome from @Tinku. I just wanted to add that we have a lot of information and support for carers via the Parkinson’s UK website. I’m sure you’ll find it very helpful in addition to the advice that you’ve already received. You can visit our website here: https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons
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Thank you Reah
Thank you Tinku
I can understand you not telling your children as they are younger, but ours were already adults and one was particularly noticing that their Dad wasnt his normal self, so it was a relief when he would tell them.
He is in private medicine and has already reduced his workload considerably and I have become his practice manager, so that it is still economic and so I can control his workload, though it is difficult to anticipate when his good and bad days will be in advance, especially if he stops one of his medications without telling me!!
I will have a look at the stories you mention. Wishing you all the best and especially in telling your children when the time is right.
My very best wishes