My husband and I learnt today that he has Parkinson’s. Not a huge shock as we had suspected it but still a huge shock to have it confirmed. It’s almost a relief to finally be told that there’s a reason for all the symptoms but we know that the next few years will be a learning curve. I’ve found this forum and think/hope that it could be a huge comfort in the years to come?
Hi Liz,
Welcome to the group although sorry to see you are in the same situation as me.
My husband was diagnosed age 53 in nov 21 and we too kind of new for sometime because of the symptoms.
It still feels very much like early days for us but have come to terms with it. Nothing has changed in our lives to be honest and we do our best to not let PD rule our life. We know the disease will progress but we also know it will be a slow process but we certainly are not going to wait around for that to happen.
Here if you want to chat anytime.
There is a chat I started on the forum called…Any wives with Husbands with PD Want A Chat. You may find that chat useful especially in these early days.
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Two things that helped me. There is a First Steps course that you really should both do. Search on the PUK website. It will give you an intro to PUK and Parkinsons, and help you to get to know what its about and meet others in your position. And secondly, find your local branch or support group. Its for PwPs and partners/carers, its nowhere near as daunting as i expected and they will have lots of advice and pointers to help. Take advantage of any social events and any exercise classes. We’ve all been there and you will get through it.
Neil
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Thanks so much for your kind and positive words Lizzy - it really helped.
Many thanks for your advice Neil - we’ll definitely look at that.
Hello Liz4198 and welcome. I see you have already been given some excellent advice, but I note your husband is very newly diagnosed so would just like to add a general comment or two for now. For many it is as you rightly said something of a relief to get a diagnosis but the early days post diagnosis can be very strange. You may find you go through a whole range of emotion whether you are the one with Parkinson’s or have a connection of whatever type. Chances are some of these emotions won’t make sense, change at the drop of a hat, go from negative to positive in a trice you get the idea. This is perfectly normal if you find this happening to you nd is just part of the early day process. I always think this is partly because you finally get this momentous life changing decision and it feels like everything should be different but in fact it’s not. It takes time to get things sorted out and meds in particular, if your husband is to start on these immediately and not everyone does, can be a bit trial and error in some ways. You do have time, as was said above in most it’s a slow moving condition so you don’t need to know or do anything all at once.
It may also be worth remembering that people on the forum are happy to share their experiences, what worked for them and so on and you will learn lots from that. However you will hear it said time and again that it’s a very individual condition, similar symptoms can impact very differently for many reasons, so bear in mind this is happening to you and your husband nobody else, so by all means follow up suggestions but if you find it’s not for you that’s fine; you’ve not failed it just means you haven’t found the best way to live with it yet. Living with it is the key and you will find the way that suits you. I can’t tell you how long because that’s a how long is a piece of string question, but it does happen and you will come out the other side with your way of having old Parkie on your shoulder and still able to have a good life for many years.
I wish you both well as you travel this early sometimes rocky road and keep us posted as you need. The forum is always there 24/7
Tot