Heartbroken, husband newly diagnosed

Hi, Not sure if I’m allowed to post on here as a partner of a newly diagnosed person? Normally I’m a very positive person ( glass half full). But I’m really struggling to cope with the " what does the future hold" part of this awful diagnosis.
My hubby of 45 years, has always loved life, music, travel, food, sport etc. I’m terrified at the prospect of losing him anytime soon. We’ve not long retired & had so many plans to travel etc.
I’m ashamed to say I’m mourning the loss of our planned life together, not just for him but for me! is it very wrong to feel sad for yourself along with the person affected. I don’t feel I can admit to these awful feelings without looking disgusting to friends & family, when it’s my poor, lovely hubby who will be going through this.
( I’m a retired nurse by the way, & feel I should know better!). The diagnosis has only been in the past week, so is what I feel normal?
Thank you for hopefully understanding. :cry: :cry: :cry:

Hello Mike,
We wanted to take a moment and welcome you to our community forum. We understand the feelings you’re having, and we can assure you that you are not alone in this. Carers’ mental health is vitally important, as you’ll find as you peruse the forum. You can find some helpful information on our website here: Caring for someone with Parkinson's, and we encourage you to reach out to our free and confidential helpline when you have medical questions or when you just need a friendly ear, on 0808 800 0303. Please don’t hesitate to take advantage of these resources as you get to know our lovely community.
Warmest welcome and best wishes,
Jason
Forum Moderator

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Hello MikeCC
I will keep this short as it’s getting late and my typing tends to give up on me at this time of day but having read your post I felt I had to write something back straightaway.
First you most certainly are allowed to post on the forum - all comers are welcome whatever their connection to Parkinsons.
Second everything you said about how you are feeling about everything is perfectly legitimate. If that’s now you feel then that’s how you feel no-one but you knows how you feel but I have to say you have said nothing that hasn’t been seen dozens of times on the forum
Third there is a subtle but very real difference between knowing about Parkinson’s professionally and having it come into your life personally.
Finally a week since diagnosis ia no time at all. I wouldn’t wish it on anyone but I am 14 yeara since my own diagnosis and still going strong like many others.
It may feel like the end of the world today but it really isn’t - although you will have to axcept that on trust just now.
Hope this helps a bit
Tot

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Hi @MikeCC The initial diagnosis is always frightening but, as @Tot has already said, you can probably still continue to live a full life for many years to come. I was diagnosed eight years ago and we decided to accelerate our travel plans in case I became unable to travel. But here I am now on a 1 month trip to India and planning more trips for the next couple of years.

All the best
Clare

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Helps a lot! Thanks for your time. It isn’t Mike writing, it’s Nikki, his wife by the way.

I guessed that but I just reply to the name that goes with the post. Glad it helped a bit. You might like to read a few of the posts in the intro and personal stories category and you will quickly find you are not alone nor unusual in what you wrote and hopefully gain something from reading some of the replies to such posts. Come back to the forum any time there’s usually someone who will pick up your post and who will be able to help.
Tot

I can fully understand this how you feel about wifes lives changing too i can fully get that i am in that position too my hubby has been diagnosed 2 years and he is 60 just gone.
My life and his had changed he has had driving licence took off him has he had seizures now too so i am learning to drive at 58 to get us out you have to make the best of a bad situation.
I am always here to talk xx

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Hi, there is a wives group on here if you do a quick search. My husband was diagnosed with Parkinson’s or Parkinson’s Plus in Dec 2022. Do have a look at the group because I think you will find many like-minded people going through similar issues. Rach

Hello and welcome
You are still in shock both you and your husband, so very early into the diagnosis it’s a natural thing we all do imagine our life’s changed irrevocably. It isn’t. The good old saying ‘we don’t know what’s round the next corner’
Round the next corner could be anything, there is a whole load more terrible things out there than Parkinson’s as you surely know.
The shock will wear off as you both become accustomed to Life with Parkinsons. For many, my husband included the journey has been one of well monitored medication for the last 12 years and has not stopped us doing what we want. So recoup, get the medication established and settled then start planning your journeys, it’s still all out there waiting for you.

I forgot there is another group which I believe is for partners and carers of people with Parkinsons not just wife’s.

Hi Nikki your post brought me back to the time when I was first diagnosed 11 years ago. The desperate need to try and make sense of it and wondering how our life would change. If I knew then what I know now I wouldn’t have been so worried as we continued to do what we planned touring Europe in our little campervan. In fact we the main constraints now are not my reduced mobility but my husbands health problems and his reduced mobility something we couldn’t have foreseen. We did make a big decision early on to downsize from our three storey terrace house to a ground floor garden flat and this allowed us to buy a small holiday home in a Ireland where we are at present. But to be honest we might have done that anyway. So maybe what I am saying is once you have got over the early shock of diagnosis just keep on doing what you were going to do and meet any difficulties as they arrive. You might have to do things slower but you get there in the end.

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As a pwp it is easy to forget that this terrible condition affects those around us. We were also planning on travel over the next 10 years (I was diagnosed at 60 and am now 63). Luckily we had already been to many places, but is understandable that you feel that you have had your futures stolen. It’s ok to mourn the loss of your plans, and it doesn’t make you a bad person. Try to do something just for you and be nice to yourself. Also, don’t give up on your plans altogether because there may be ways you can adapt them

Why on earth wouldn’t you grieve the loss of both your planned futures? That’s totally normal and nothing to be ashamed of. There are supposed to be 5 stages of grief. Denial, anger, bargaining, depression and acceptance. Hooey! My husband who has Parkinsons, moderately severe dementia and diabetes type 1 has never got beyond denial as he has declined so fast with Parkinsons only being diagnosed in early 2021. I am vaccilate between anger and depression. There is nothing to bargain with or for, and I’m too busy worrying about our unknown new futures and finances and legal difficulties to want to accept the inevitable and the unknown. All anyone can do is their best, and that differs from person to person. Neither of us is going gently, and it will not be good night, and we will continue to rage, rage, rage. The light has already died. How you and your husband make the best of it will be totally different to anybody else. Wishing you all the best.

Look at all the alternatives that are producing food results keto diet, low carbon diet, intermittent fasting, red light therapy, DBS, stem cell therapy and there are more therapies being developed. I like the diet and exercise approach myself. You have a bit of research to do, I like YouTube myself :thinking:

I’m really sorry about your husband’s diagnosis. It’s okay to feel scared and overwhelmed right now. Feeling sad for yourself isn’t wrong at all. Just take it one day at a time, and lean on each other for support.