Hi Lizzy. Just like you, my husband was diagnosed in September of last year. He’s 61. Covid delayed his first visit to a GP/ hospital as like everyone else we were avoiding “unnecessary “ visits and his symptoms weren’t terrible, we just knew something wasn’t right. He has it worse on the left side, with a general weakness and stiffness in both left limbs. Thankfully little in the way of tremor. His poor sleep is the worst part for him, I think.
I just feel a bit lost sometimes. We are in separate bedrooms as I can’t function in the day with him awake beside me at night. Then he’s not up and about until 11.30- midday, by which time I feel half the day has gone. Also he wasn’t exactly Mr Demonstrative before but now he’s starting to get that fixed face look and I rarely see a smile.
I guess some days are diamonds and others are just stones.
Hello ladies. Posted the above and then read right down to the bottom most recent part of the thread. I feel so many kindred spirits on here; just being able to hear the honesty and the daily grunt and grind that resonates with my own situation and that we are all dealing with makes me feel less on my own. Emotionally sometimes when you stop and try to gaze forwards it feels so dark and uncertain and then you have to just force yourself to try to see the positives, and not think about what if. Thank you all for your frankness and honesty. Good to know I’m not on my own.
Hi Rach
Do they know their Dad’s diagnosis? My eldest grandson who is 11 and lives a long way away so doesn’t get to see us very often, asked if his grandad has the same problem as Michael J Fox which amazed me.
Very difficult but can you try and tell them that their Dad isn’t too well and not to take what he says to heart? Probably not much point talking to your husband about it if he can be ‘difficult’ at times, but perhaps you could get him at a good moment?
A tricky one. You must tell yourself it as well, you are the backbone of the family. Look after yourself.
Jane
Hi,
My husband also was diagnosed 11 years ago at the age of 54. He recently has also shown decline in physical and mental state. He also has dementia and I really struggle now to understand what he is saying. He finds it really hard to find the right words to express himself. I have made up some picture cards of the everyday items that he uses and sometimes loses. Am also looking at a stairlift as he has started missing steps when walking upstairs.
Hi Grolly, just read your post. I’m so sorry that your husband is not doing so good after 11 years with this wretched disease. My husband was diagnosed 6 years ago. He had a total knee op in November which was a great success and he’s now able to walk free from pain at least. His cognivity is certainly not as good as it was but I am trying to keep him interested in life as much as I can and trying to keep him active by going to the gym and out for walks together. He also attends Men in Sheds which is great for retired men to get together. I often think the mental effects of PD can be far worse than the physical, but when you suffer from both it can be totally overwhelming. Sending warm wishes to you both and take care. Jean
My Husband is newly diagnosed, into his 4th week now. He’s very quiet and sleeps mostly all day. Managed a little walk today with the aid of his new walker, however he’s very scared and nervous.
Currently on Madopar and Domperidone to help with his nausea.
To be totally honest, I’m just wondering if his medication is working as it should? He takes Madopar 2 x 3 time daily but this only lasts up to 3/4 hours. Anyone else experiencing this 
Hello, I have only just joined this forum and reading your post, was so familiar to me. My husband was diagnosed 6 years ago and like many have written previously, the first couple of years, things were okay. My husband too,suffers from sleep disturbances, usually starting about 4.30am.At first it was the Irish dancing , legs going in all directions, whilst he slept blissfully on. Then the singing, nothing like being woken up to a chorus of Oklahoma, which he doesn’t even know the words to! Then the laughing in his sleep, which I found the creepiest, but worse the shouting out and swearing and relieving when he was still at work. Trying different medications has helped with all but the shouting out, so I have moved into the spare room with earplugs, for the sake of both of us, as my husband is totally unaware he is doing it and I was sleep deprived and grumpy!
Personality wise, he’s become quiet, whereas before, he was very outgoing. He’s still funny and we laugh, but at times he comes out with some stunners, as though he’s lost his filter. Also, he isn’t affectionate anymore and he’s aware of it, so I go up and say” Time for our once a day hug!”
Reading comments on here, as helped enormously, some things you can’t talk about to your children.
We have just had a family visit which necessitated me moving out of ‘my’ bed in the spare room and back in with H for a few nights. I was very glad to move back. I don’t cope well without sleep and he is quite active at times during the night. I haven’t been punched again though, I’m glad to say.
Sometimes I wonder how much is PD and how much is grumpy old man syndrome… He has been moody for several years, actually looking back, for most of our marriage! He is still quite witty though which is good.
He has a telephone clinic appointment this coming week…He is still hoping for an increase in Sinemet… I’m not so hopeful but we will see.
Have a good weekend everyone.
Hi ladies, hope that we are all doing ok. DH has a consultant appointment next week which I am hoping to go to (all dependent on Covid guidelines still 
). He is still refusing medication and has at times said that he doesn’t think that he even has PD. Do I bring this up at the appointment or sit on my hands and see what happens?
Just re-read grumpy man syndrome!! That made me chuckle. Men eh!?!
Clinic review appointment. No change in medication because of danger of cognitive impairment. He has accepted that from his consultant.
We march on!
Glad everything sorted for you Janey.
We had a really positive consultation today. No real change in symptoms and consultant reassured DH about medication so he is going to try it. Focusing on helping him for the future and doing things now that can aide that. Mentioned about the sleeping problems - DH said he didn’t think it was a problem. Consultant was lovely and said that there is a pill that can help with the lucid dreaming, talking and acting out and said that DH should really think about me in this situation. Questioned the Parkinson’s plus possibility and asked whether there was any other sign apart from urinary issues and he said not (which still seems a bit strange to write it on the diagnosis). Said only time will tell on whether it is PD or PDplus. Take away is that DH is going to focus on keeping fit and talking to work again about dropping some management elements.
Phone call consultantation in November unless serious change.
That’s good Rach, it all sounds positive. I’m glad your husband is thinking of being more proactive. Great that your consultant emphasised that your wellbeing is important too.
Hi, I’m a wife of a husband who was diagnosed with PD 2017, I have noticed in the last year of his change in his mood, depression,fatigue,he is usually a happy chappy , but back in March he was diagnosed with kidney cancer so that has really impacted on us both
Hello Bootycat13, I’m very sorry to hear your husband has been diagnosed with kidney cancer. Dealing with PD is an exhausting enough challenge on its own. I hope he soon manages to regain his cheerful and positive mindset. Reach out and get all the help you can - both of you. If he can keep his PD under control it can only help him deal with this additional diagnosis which must have been such l a terrible shock. Sending you both my best wishes. Jean
Hi jean1, Thank you for your reply, and your support & kind words.His mobility isn’t very good now so we got him a mobility scooter, he thinks he’s Micheal Schumacher now 
also noticed his tremors are more prominent in both hands .
Hi everyone, my husband has parkinsons for over 10 years his symptoms are getting worse,tremors now in both hands he gets very frastrated and tends to go to bed so he can have a rest from his tremors in both hands to ease the aches in his arm when he sleeps,he does not want to go anywhere he has become a recluse, it doent help I have RH and Ostreoarthrits all over my body and have just had a shoulder replacement, i feel totally useless I normally do everything I feel alone sad and find it hard to cope sorry I know there are worst cases but at this time and now how can I help him.
Hiya Jenny1,My husband has had PD since 2017, as I have previously mentioned I’ve noticed a change in him in the last year , his mobility,tremors,depression & more recently head movement. We are all doing very well each one of us in our own way with our partners/ husbands,we’re stronger than we think.Bless you all.
Hi everyone! I’ve just found this forum. My husband has been diagnosed with PD. We are in our early 60’s, and had just taken early retirement with the idea we would have some nice holidays and eat out more often, go to concerts etc. However, my husband has practically ‘shut down’. We have just come back from our overseas holiday that had been delayed because of covid, and he says he never wants to go on holiday again as it’s all far too stressful. Indeed, we had some very difficult days (because he was stressed about every little thing), and if he could, he would have stayed in the hotel room all week. His appetite has become miniscule, so he doesn’t want to eat out, and he just doesn’t seem to want to do anything other than watch TV and nap. To be fair, it was always me who was the active one, wanting to see the world, or just doing active things, he’s never been bothered, so we tended mostly to have holidays where we just lay on a hot beach, very much his thing and not mine. We had been planning since before covid, for a three week escorted tour of USA next year, but yesterday he broke down in tears saying he just couldn’t do holidays anymore, and I’m heartbroken as this is what I’ve wanted to do for years. I now see a future for us of maybe 20 years or more with absolutely nothing to look forward to except at some point being his full-time carer. He says he can’t cope with anything else except thinking of his health - he’s always been a chap who can only have one thing in his thoughts anyway (like I can’t mention needing a new carpet for the bedroom if he already has in his mind that we’re having a new en-suite fitted (already booked and paid for, in a couple of months time!! He gets incredibly stressed when ever he’s expected to do or think of two things at a time!) He and I are quite different in our attitudes and I think we need to do these things as soon as possible as we don’t know what the future holds, and if necessary, ask the doctor if there’s anything that will help him, and yet, he seems to have just accepted that he’ll sit in front of the TV twiddling his thumbs, waiting to eventually die! I love him to bits, and there’s no way I won’t be there for him throughout this, and he knows that, but I’m getting quite depressed at the thought of spending 20 or 30 years barely leaving the house. We have five kids and the last one had only just moved out, so this was supposed to be the time for us. I feel so selfish for thinking like this, as it is obviously extremely hard for him, so how do I deal with these feelings that I no longer have a life, as he seems to have accepted this, and I just can’t?
Hi Kas1,
First of all, we’re sorry to hear that things have been difficult. While we won’t minimize the challenges you are both facing, we can at least assure you that neither of you are alone in what you are feeling. Spend just a little time on the forum and you will find loads of others who have been where you are and will have valuable insight to share. We also wanted to make sure you’re aware of the resources on our website, like this section for carers, and our free and confidential helpline at 0808 800 0303. Our advisers at the helpline are highly trained and can help with everything from medication questions to psychological support to finding tools and resources in your area. Please don’t hesitate to reach out. They’ve been a wonderful source of assistance to many of our forum community.
We hope this can help, and we offer our warmest welcome.
Best wishes,
Jason
Forum Moderator