Hello Janey, I hope your husband’s PD has slow progression. We are 6 years down the line (he’s now 70) and for the first few years it didn’t have too much of an impact on our lives. But in the last year things have got worse with falls, freezing, UTI’s, constipation to name but a few unwelcome symptoms. I’m slowly but surely becoming his full-time carer and there are times when our life is overwhelmed by this horrible disease. But we have to keep on keeping on don’t we and hope that a cure is just looming on the horizon… Wishing you both well.
Hi Merlot, Puffin and Janey and welcome to the chat.
It seems like the rest of us you all have your own battles. Merlot I can imagine it can become lonely at times, we are all here for each other. Puffin sorry to read your husband is having problems with sleeping, hopefully someone on here maybe able to give you some advice and support.
Janey your husband’s story is very similar to my husband. He was diagnosed in November and like your husband hr started with a tremor during lock down and our GP referred him to a neurologist. However after several months and still no word of having an appointment my husband decided to go private. He was diagnosed with PD within 10 minutes of his private appointment with the neurologist. So far he has not responded to any of the drugs he gas been prescribed, if anything the tremor osso much worse.
My husband has always been very positive and never let’s anything beat him. I am so glad about that because it helps to keep me going. For now we are taking little steps and getting on with life.
Always happy to chat. Xxx
Hi Janet and everyone. I am new to this forum. I’m here because I’m finding everything too difficult to cope with at the moment. My husband was diagnosed a couple of years ago, he is 69. His PD is characterised by lack of mobility (he can’t walk much) and also cognitive difficulties. It’s the cognitive problems that I’m finding very hard to cope with. I don’t know what I should do. It’s such a sensitive issue. My husband was a GP and is very aware of the possible implications, and so won’t countenance that problems exist. So we lurch from one disaster to another. Literally. He’s just crashed the car today. Again. I feel very alone. Is there anything I can do?
Hi Wotnow,
We’re so sorry to hear about your recent difficulties. We can only assure you that the members of our forum community have experienced similar, and are always happy to share helpful advice and experience. Please be aware of the resources available to you at our website at Parkinsons.org.uk, such as this section especially for carers. We also have a free and confidential helpline staffed with lovely supportive advisers. You can reach them at 0808 800 0303.
Wishing you our best,
Jason
Moderation Team
My mother had PD for many years but was a tough character. She eventually went into a twilight world and died at the age of 102. It’s the cognitive problems that worry me most, and the feeling that I must stay healthy myself for when I have to care for him more. I’m trying to take every day as it comes - during the last couple of years of his symptoms I’ve done too much worrying, now I know what we are up against it is easier in a way… I’m sorry so many of us are going through this. Xx
Hello Janey, the latter part of your post, re the worry of cognitive decline and the added worry that you may become unwell yourself whilst being responsible for your husband’s care, resonates strongly with me. This is exactly how I’m feeling at the moment… I feel everything is about his condition and people rarely ask how I am. My heart goes out to all carers. Wishing you both well.
Hi
My husband was diagnosed four years ago weirdly after suffering a Pulmonary Embolism the Parkinsons just came to the forefront. He is just the loveliest most patient person ever and makes no fuss but I know his quality of life is very low. His tremors and off periods have become worse recently and his consultant is trying all sorts of medication for him the latest being the Rotigotine patches, with all their side effects that has been a worry.
We do our best to be as positive as we can, we have recently looked into moving to Spain but since the changes with Brexit it has proved impossible as we cannot obtain a visa because no one will provide medical insurance for PD so no visa. So it’s back to plan no 23143141545 as we keep trying different things. It really is good to have the forum as my friends and family are wonderful but obviously don’t understand as they aren’t living with it and some days I just want to scream!
We call it Mr Parkinsons and are getting used to having three in our marriage but after 42 years I didn’t really want anyone else in our lives especially not Mr. P.
I’m always here if anyone wants to chat, shout, laugh whatever 
Thank you Jean. I was a nurse before I retired and I have always felt very strongly that carers are the foundation that holds the whole thing together, and their wellbeing is extremely important. It’s early days for us yet but I am already thinking of things I can do for myself to keep on an even keel. I hope you can do the same. X
Hi Alibally,
Welcome to the chat,
My husband is on the same patches as your husband. He has been on them for a month now. Unfortunately they have not had any effect at all, even with the dose going up. This is his second drug he has tried since being diagnosed last November. His consultant is, trying to sort out the next prescription of drugs to try. One thing I have learnt since my husband’s diagnosis is. that it really can take a time to find the right drug and dosage that works for each person.
I have had a bit of a down today with dealing with my husband’s tremor it has been bad today. My husband is a lovely kind, patient man and I really feel for him having this awful disease. He copes so well with it and just wants to live life as normal.
Hope you find comfort with chatting to others on here.
Morning Janey,
It is so difficult to get carried away with worrying isn’t it? I often go into a trance of worrying and predicting our future with this disease. However I always try and pull myself back out of it. We have to remember the disease is just like many other diseases and it is an individual disease. We don’t know how our husband’s symptoms will progress and things may not actually get to where we sometimes predict to where they will get to. That doesn’t mean I am in denial because I am fully aware of how it can progress. I just really do want to try and not spend my life wasting time on thinking the worst all the time. I want to use the time to enjoy our life and try to carry as normal for as long as we can. That could be years yet who knows. I know all our situations are different and it is harder for some to think that way who are having harder times. As my husband always says there are people who are much worse off than he is with more worsening diseases and illnesses.
My husband is in the process of building us a summerhouse. I think of that as at the moment he is still able to do things. He hits his thumb quite often when he misses what he is hammering but he is still getting on with it. That is what I do try to focus on. I had an awful day yesterday because my husbands tremor was so bad, still not under control with medication. Days like yesterday I seem to focus on the tremor telling myself how bad it is. My husband knows I’m watching him and it makes him more anixious and itakes him shake even more. That’s what I do at times and then it ruins the day. Today I will do my best to not focus on it and just enjoy the day.
Have a good mothers day to all our mothers. Treat yourself kindly. Xxxx
Hi Lizzy, re your husband’s tremor, I know what you mean. It still distresses me when it’s bad even after 6 years. I don’t think you ever get used to it. For them too, it’s such an obvious visual symptom of the disease when they are in public, especially when dining out for instance. We were told from the outset by our consultant that the tremor would be difficult to calm and sadly he was right. However, it’s certainly not the worst of his problems, with the increasing non-motor symptoms beginning to take hold now. I hate what PD has done to him and the impact it’s had on our retirement plans. Will just have to try and stay positive but must admit it’s getting ever harder… Have a good evening.
1 Like
Hi everyone this is my first time on the forum.
I already feel a relief in reading your posts and seeing us in them too.
Husband diagnosed age 58 in December.
Learning to cope.
Like you all
Our lives have been jolted badly out of what we knew and hoped. The hardest part is watching him every day., watching other couples and knowing that won’t be us. A blessing- he does not seem to see his cognitive decline
So nice to connect
Hi everyone. I hope you have all been able to enjoy the spring weather, especially as we are forecast sleet in a couple of days! I’m keeping negative thoughts at bay by throwing them out before they get hold, difficult I know when you hear your husband tremoring on the edge of his tablet while watching Youtube videos, he doesn’t seem to realise he is doing it but the loud tapping becomes pretty annoying. His tablets haven’t kicked in yet - he was expecting an overnight effect, very unrealistic.
How do you all manage me-time to get away from it all for a bit? I walk in our local parks with the dog, listen to music, get out in the garden. I love to travel but not sure how long that will be able to continue.
Has anybody else noticed how Parkinson’s seems to be everywhere, in the news etc? My husband watches Car SOS and the unwell recipients of car makeovers often seem to have Parkinson’s. He lives for his cars, his nightmare would be not being able to drive. I’m hoping that day will never come.
Wishing you all a peaceful day.
1 Like
Hi,
Spriesarah and welcome to the group. Sorry you find yourself here but hoping you will find the support helpful.
You sound like you maybe a little like me where I find myself looking out for my husband’s symptoms on a daily basis. I am trying my best not to do this as it doesn’t do me or my husband any good, he gets anxious if he knows I am looking at him and that then makes his tremor worse.
Regarding you looking at other couples and feeling your years together won’t be like theirs don’t torture yourself. You don’t know how this disease will progress in your husband he may not even be too bad. Not only that you have no idea what is going on in those couples lives that you are looking at or even what life will throw at them over the years. None of us ever know what will be thrown at us, so try not to dwell too much on that. I reminding myself that my husband is still the same person and we can still have many happy years together, well we will have many more happy years together because we will make sure we will.
Always here for a chat.
Hi Janey,
I am with you on the tremor knocking as I can hear my husband knocking on the edge of his desk when he is, working. It must be so awful for them really. My husband’s drugs haven’t kicked in yet also but we know it can take a very long time to get drugs right including the right dose.
With me time I try to watch a lot of positive youtubes to help with my mental health. I love the outdoors and especially when we have syc lovely weather. So lovely to hear the birds coming alive early morning. I love to bake and eat what I bake😁
Take care Janey and chat again soon. Xxx
Morning ladies, how are we all doing? DH’s latest thing is not sleeping with stress about work and Parkinsons. He huffs and puffs until I wake up and then he wants to chat.I feel mean at this point but I literally can’t do night chats as well. It just all feels too much at the moment. Also, I am the drained for work and I have to be on my game as a teacher. Sorry for the rant, only close members of family know and it is hard to talk to any of them.
Sorry to hear about that Rach. We have been in separate rooms since husband’s orthopaedic op about 18 months ago and although I have to move back when we have visitors it is good. Have you mentioned to him that you can’t function on little sleep? Perhaps he just doesn’t realise, although I know PD can affect thought processes… I would be firm and say you will get up early and discuss his worries in the morning but you really must get your rest. I am quite direct I know but I believe in saying it like it is. My husband is used to it and would be ok but all relationships are different of course. You are important and you need to take care of yourself x
Hello Rach, my husband and I no longer share a bed due to him being up and down throughout the night and also he has times when he threshes about shouting, kicking out etc. That’s certainly not conducive for the good night’s sleep we carers so desperately need, especially so for you as you’re still working. I’m afraid you just have to tell him that you need to get a good night’s sleep in order to cope with it all. If we go away I try to book a twin room but never sleep well at all which is a shame as I don’t enjoy our breaks away as I used to, thus they’re becoming far and few between these days. Hope you sort it out.
My husband had a couple of occasions a while ago when he dreamt he was being attacked and punched me, fortunately not hard but it’s a bit unnerving to say the least. That, and his operation, were the deciding factors for me to have a room of my own. When I’ve had to move in with him temporarily when family stay there have been no further problems, but I always relieved when I can go back to ‘my’ bed x
Hi Janey, yes I’ve been punched and kicked in the back, arm grabbed really tightly etc. It’s awful being woken from deep sleep like that so I decided enough was enough as I have osteoporosis in my spine and it wasn’t worth the risk. I think it’s quite common with PD sufferers. Sleep disorders are also an early indication of the disease long before other symptoms manifest. My husband had always had restless legs in bed and often shouted out in his sleep. I recall an incident a few years before he was diagnosed where he dreamt he was hang gliding and jumped off the bed and hit his head on the bedside cabinet! A portent of what was to come although of course we didn’t know it then.