Hi Cassland! I’m new on here too. My husband has recently been diagnosed and had numerous hospital appointments, scans, etc in the last three months. I came on here when we were both feeling quite low, and straight away, people were friendly and offering advice - some of which is already in use and working well, so far!!
There seems to be a lot of us around, sadly, but hopefully we can all support each other in our quests for trying to live as full a life as possible!!
Hi Kipper
Sorry you’ve had to join us, if you see what I mean.
It’s a quite daunting journey. I find it helps not to look too far ahead. I go to a PD meeting and some of the men there have had it for over 1O years so that makes me feel more hopeful. There is no way of predicting how it will progress.
My husband has had no improvement with his tremor at all with medication but has stopped shuffling, his balance is better and he can play the flute again (a dubious plus!) He is on Sinemet. Do you have a PD nurse you can talk to? Not everybody reacts well to the same drugs I believe.
You must be very busy with your large family. Have you spoken to your children about things? I know they are all young but my grandchildren who are mostly younger understand why their grandad shakes all the time. They are very matter of fact about it.
Wishing you all well. X
I have found it quite lonely at times, not sure it is easy for anyone to understand unless they have been there.
We told them right at the start as we were so shocked we wanted them to know why we were tetchy…and not hear it from someone else. I think it has worried them, the implications could be quite significant…we have a lovely house in the woods…they all love it…but it is part of my husbands job…we are not sure how long he can carry on working, every day feels like a struggle for him. Now we are just trying to enjoy what we have whilst we can! 
Hi Lizzyg and all you lovely ladies out there, haven’t been on this forum for some time as we have just plodded on since hubby was diagnosed 8 years ago. He has been doing ok, still working and just about driving. Lock down didn’t help, he has become even more of an introvert and I have to push him to do normal things sometimes. He gets very stiff. And to add to that 3 days before we went on holiday, he was given his redundancy notice 
No finish date yet but it will be before Christmas. How is somebody who has had PD for 8 years, (Accountant) supposed to find a new job? He was hoping to work until he was 60, 2 years to early!
It also looks really hard to get any benefits, I am still working and now looking to change job to a full time role. I hate PD…
Just found a group on Facebook called Partners of People with Parkinson’s I have just requested to join, may help others on here.
Hi everyone,
It has been many months since I last posted on here and I would like to apologise. It got to the stage where I wanted to get my head around my husbands diagnosis and not exactly shut off from the forum but just kind of concentrate on my husbands diagnosis without reading other sufferers stories. Sorry if that sounds a little mean but I hope you all understand where I am coming from.
At the beginning of a diagnosis whether it is yourself or your other half I feel it is maybe better to get your head around your own situation before you start to read of other people’s situations. I personally found myself feeling quite scared of some of the stories I was reading. Again I am really not meaning to sound selfish and hope you all understand where I am coming from.
Anyway it has been a year since my husbands diagnosis he is 54 and he is doing just fine. The medication as helped with some things like he now has beautiful handwriting and better movement in his hands. The tremor is still just has bad if not worse but we seem to be getting through that and accepting it. Well he is but I still struggle with seeing him shake at times but I don’t let him know that. Although he does notice me staring at times, I have so got to stop doing that.
Life has carried on completing normal. We have had a few holidays and been doing many jobs around the house. My husband is amazing at staying positive and carrying on as normal as he can, awful to say this really helps me cope with it all, should be the other way roubd really.
Anyway so many of us going through this with our husbands and I am more than happy to chat with any of you to help you cope with the PD life.
Please just remember we can all still have a normal great life with our husbands if we keep a positive mindset and do the normal things we live to do with our husbands.
Looking forward to chatting again.
Love to you all.
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Hi lizzyg
My hubby has had pd for about 10 years. I had to give up work 5 years ago as he is getting worse.
Managed a few holidays, which has been one of our hobbies for over 30 years, but with lockdown we have been uk bound only. Off in a few weeks for first trip overseas and both dreading it and looking forward to the challenges to be honest, due to issues with his meds.
Glad to hear your hubby is being positive and still managing to drive and work. My advice is take lots of pictures and videos then if, in future, he can’t recollect the happy days, you can show them to him.
Keep smiling, there are good days and you just have to cherish them, especially if they get rarer xxx
Hi, so good that you are still getting away on holidays good on you both. I think everyone tends to take pics and make happy memories regardless if they have an illness or not. After all it’s pics of our good times that we will cherish as we all get older.
Have a great holiday, don’t think about the challenges because let’s face it those challenges might not even happen.
Enjoy and have fun. X
What are we all up to today?
We are enjoying a weekend away in Chester, doing some Christmas shopping and going on a lovely walk. Hopefully get out for a nice meal later.
Hope you all have a great weekend. Xx
I love Chester! Used to live in North Wales and get the train from Rhyl. Hope everyone is doing well. X
Morning everyone,
What are we all up to for Christmas?
Hi lizzy,
Me again. Returned from our first adventure abroad in nearly 4 years just before Xmas. It started well but due to hubby having a fall, caused by street light not working and uneven path to our bungalow, all hotel’s fault, he ended up in hospital for 3 days! Managed to get him back to uk but he’s really struggling to get over the fall even though he didn’t break anything. Think it was the shock of being hospitalised that did more harm. Christmas was a bit of a wash out after that and he’s only really just coming together more.
Hope your Christmas was less stressful
Happy new year
Hi ladies, hope that you are all ok and your other halves are doing well. I have had to take a step back from trying to badger R. He has started to get further wee problems and I keep asking him to get it look into but he won’t. He isn’t doing any form of exercise to keep himself moving and is still working ridiculous hours at work. I feel more like his mum nagging him and apart from winding each of us up, it isn’t working. I can’t keep going on like this. Feel terrible because it feels like I am giving up on it all but I just feel done with it all. We have an appointment with his consultant in February so will probably just raise it then.
Thanks for reading, just needed to vent (again) Rachel x
Hi Rachel, sorry to hear your husband is having problems. As you haven’t gone into details, am I to presume he’s having trouble with his bladder…? In the last couple of years (and 7 years from diagnosis) my husband started to get issues with urgency for the loo and needs to get out of bed several times a night. Not easy when mobility is compromised. We were referred to a continence clinic where he had a bladder scan and some basic tests to check how he was functioning. I must add that he is 72, so with or without PD, he’d probably have issues at night by now. He was prescribed Mirabegron which helps relax the bladder so it can hold more. He still needs a couple of trips to the loo so I bought a bottle for those times when his mobility wasn’t so good in the middle of the night. It sounds as if your husband is much younger as he’s still working, so I’m sure if he can get referred to the clinic via GP, it could be easily addressed. I’m sure if he’s noticed it’s becoming a problem and it’s easily rectified he’ll realise it makes sense to make the appointment. Hope he listens more to what you’re trying to do for him. I totally understand where you’re coming from. I’m afraid tough love is often the only answer. You need to tell him how frustrated you feel when all you are doing is to try and keep things as good as they can be for both of you. He may have PD but it massively affects your life too. Best wishes. Jean
My husband had problems with urgency before diagnosis but on Sinamet it stopped thankfully.
Hi ladies,
I have just discovered you. My husband was diagnosed with PD a couple of years ago and I feel overwhelmed by it all now. We went to Marrakech for Christmas and that scared me so much I thought how the hell am I going to manage this without collapsing myself. I have a history of depression which he helped /helps me with. I am so angry that this lovely man should have such a horrible illness. Practically, we are going to have to move house (doctors orders) and work out how and where we are going to live. Very, very scared.
I am here, just joined. My husband was diagnosed in August 2021. I am trying to understand it but its all so new still
It is tough to take each day as it comes, especially for a worrier and planner like me. We were at the hospital yesterday and saw my husband’s new consultant for the first time. He first started having symptoms 3 years ago. One of the things she emphasised is that everybody has a different course of PD. On medication my husband has improved a lot, but still has marked hand tremors that upset and annoy him. Medication to help could give him cognitive problems we were told. We will just go on as we are. I am trying to remain optimistic but it’s hard. Good wishes to everyone affected directly or indirectly by this horrible condition. X
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Good morning to all our new members to this chat group.
It is so hard for us wives to watch our husband’s living through PD.
We must look after ourselves too and try our best to keep positive, look for all the good in our lives too. Let us all make it that PD doesn’t change our lives too much as well as our husband’s. The more normal we can keep things for as long as we can will make life more enjoyable.
Have a wonderful weekend all. X
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