What do you know now that you wish you knew when newly diagnosed?

That I was going to to try learn how to play the guitar, it would have been a lot easier then than 4 yrs later.
Stop reading stuff trying to find answers. It's mostly depressing and pointless, you are healthier now than you will be, and some hard times lie ahead, which is true whether you have PD or not. Knowledge is only power if you can do something with it, and I'm afraid some stuff is just out of your hands.

Go and do something worthwhile.
I think I would like to have known that my husband had Parkinsons a long time before he was eventually diagnosed at 70

When I look back I can now see he had been living and struggling with it so very many yeasr . Even when we first married . He is a stoic man always carried on with ever complaining so I am not sure which would have been the best at least then he wasn't aware he was living with it so didn't worry about his future but we could have made things easier for ourselves . I wouldn't have expected so much of him or told him not to try and knock me over because he wasn't walking properly etc . to just get on and pick the food off his plate. That I couldn;t understand his writing. understood why he had such painful shoulder .

Started his meds earlier .


We have always been very happy where we live and made friends but probably would have considered moving to a house without steps or a bungalow . If you have been contented in the same house for over happily 40 years it is not as easy to change .

Of course all this is in hindsight .
LRL's post is very interesting. I agree that, especially early on, people can become very obsessed with finding out what caused their disease, which is both unlikely to be answered and pointless as you can't undo it.
on the other hand, there are many things you can find out that can help you cope with and even get rid of symptoms.
i find neurology fascinating and enjoy learning more about it, but i can see how many people could find it boring. but personally speaking, i find it good being able to read detailed reports of experiments and treatments in order to have a better understanding of how much expectation to invest in them.
i believe that the prospects of someone diagnosed now are radically different from those of someone diagnosed 20 years ago. understanding the probabilities of different futures gives you hope and strength, based on evidence and not just positive thinking. but we must all come to our own appropriate strategy of how to cope that best suits ourselves.
johnnie
your husband is lucky to have such a partner in life.

ps wouldnt a stair lift be better than moving?
We had a stairlift installed a year ago . The best money we have spent . My husband struggled along with myself . We did have some scary moments lol He is a stoic man as I said before , stubbornly wouldn't give in .Recently bought a small walking frame one with two wheels in the front and I have put sliders on the back two . Narrow enough to go through doorways and light enough for me to take upstairs . Might get round to buying a 2nd one they are not expensive . W

We have also been loaned on long term a profile bed . the district nurses requested it for him . We had to wait quite a while but had it delivered eventually . It took a while to work out which was the best way to manage it but have got there and it has been a big help ., I decided a long time agol if ever I thought we needed any aids or alterations I would do my best to get it in place when he needed it not a month before it was too late . Have seen it happen so often .What a waste

He cannot manage a walking stick , he has poorly knees as well . waiting to have a 2nnd op on his left knee before they do the second one . One of the reasons for the frame So Happy days all round . Fingersx it will be successful .

A nimber of people have said yto me that I AM WONDERFUL . Well I must have been wonderful for over 50 years because we have always looked after each oth , I am just carrying on what we started . It might not be easy but it isn't a burden .
In truth, Johnnie, you do sound pretty wonderful. Thanks for your post.

And can I just say, Turnip, that I find your posts helpful and uplifting. Thanks so much for your contributions to the forum.
What an excellent topic to give an appraisal.

My sincere answer, is, to have no regrets, We can't changed the past.
Yes, I've lost a lot of my life to what was undiagnosed parkison's, and I was a carer to my late wife which was very stressful, and no doubt, had much to account with acceleration of my symptoms. From what I've read and experienced with parkinson's, I truly believe that she was an un-diagnosed parkinson's sufferer, but after the trauma of being diagnosed, I decided to fight and hold firm the value that the neuro, nurse and my GP, who jointly voiced, we don't die of parkinson's, we die with it.

We can't change the past, only the future.

Also, with the experience of having been a carer and now the patient, take a good time and just try to understand what extreme thoughts the carer and the families have to bear. Hopefully, your relationship will be strong and be able to bear the trauma and give quality time together.

I live on my own, which in some ways is to me personally easier to bear, as I believe that someone coping with the personality problems of the patient with parkinson's could be unbearable and I fully understand and sympathise with the partner's of parkinson's sufferers who don't cope and run..

My perception is, being diagnosed is traumatic, yes, but we must not let this ruin our lives, and, their are always many, many people a lot worse worse off with medical problems than us!

From my own experience, being positive is a good anti-dope with facing up to being diagnosed, but its something we can't preach to anyone. We've no given right to do that. The only right we have is to be able to be there for someone less able to cope then ourselves when their hour of need calls.

pp