New diagnosis - in denial?


#1

Asking for some advice please. My husband was diagnosed with Parkinson’s in April. He is 53 and we have two young children. His symptoms are quite mild so far and we are adjusting to the news and what it might mean in the future. Recently he has opened up to family and friends about his condition but he is saying he will beat this and one day look back and say that was a close call. I don’t know what to do. It feels like he is in denial but I also like that he is showing optimism in the face of adversity. I am more realistic and wanting to get prepared - not sure how to handle this. Any advice from caters and those with PD would be so welcome. Thank you.


#2

I was diagnosed 4 years ago after about 4 years of increasingly noticeable symptoms that something was wrong (I’m 57). I’ve never regarded it as something that can be beaten as there is no “cure” at present, everything just buys you a little more time. He hopefully has a few years before it starts to really impact so make the most of that time as a family. If he needs to believe he can beat it to carry on then let him as a positive attitude is so important. You need to prepare yourself for when it begins to really affect him and he realises what PD does to a person. You also need to prepare for the increasing demands on you as his care and support needs increase. I would say let it alone for now but be ready to help him find new motivations as time passes (particularly seeing his children growing up and the precious time with you).

Sorry if that is harsh or negative, I wish you both well but it only gets harder. A miracle cure breakthrough would be nice right now!


#3

jj27 is correct in the fact that at some point PD will alter your life in what you are able to do, but I would suggest that you put that out of your mind and deal with changes as and when they happen. I am 45 with two young kids. I taking life with PD as it comes and focussing life on my family and keeping fit. If you can do all the things people advise it might slow the diseases progression.
Keep positive and get on enjoying family life!!
I shouldn’t worry about your husbands comment. Whether he fights, beats, slows down or lIves life to the full he’s on the right track.
LWYMI


#4

Dear JJ27, thank you so much for taking the time to write and give your advice. It was neither harsh or negative, just extremely kind of you. I am trying to prepare as best I can and be realistic, but I appreciate that he will need to hold on to some hope. I will leave it alone and try and enjoy the mobility while it lasts :wink: I wish there was a manual or a timescale or something to measure… the uncertainty is difficult. Thank you once again, L


#5

Hi Rufmonkey
I agree wholeheartedly with the others. Take each day as it comes and make the most of the present. The Parkinson’s journey is different for each person so it’s really impossible to know what will happen and often progression can be very slow.

When I was diagnosed 18 months ago my immediate reaction was that everything had to change immediately. I wanted to drop many of my activities but fortunately was persuaded to wait to see and am really glad as my symptoms have barely changed and I don’t really have any restrictions yet. We did bring forward a lot of travel plans so that we can do the more demanding things sooner rather than later. Initially I wasn’t prepared to book anything more that a couple of months in advance but that too has been relaxed and now we have trips planned as far away as autumn next year.

All the best

Clare


#6

Thank you Clare, and I’m really glad to hear that your symptoms have not worsened much in the past 18 months. I hope you have many years ahead with as much mobility as possible. Thank you once again - best wishes, L


#7

Hi Rufmonkey,

A warm welcome to the forum.

I’m happy to see that you’ve received such great advice from other members. I agree with the comments so far and you may also find it useful to check out our ‘newly diagnosed’ section on our website here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons

Hope you continue to find the forum helpful! :slightly_smiling_face:

Best wishes,
Reah