Hi, I am quite new my husband was diagnosed November 21. Just wondered if there are any other wives out there who would a general chat about having a husband who has PD or just a chat about anything.
It will be great to hear from others.
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My husband is not very talkative, but sometimes I can talk to him about his well-being. I think that few men will complain because they do not want to seem weak.
Hi amadaa8,
My husband is not that talkative when it comes to his PD, he would rather not talk about it and brush it under the carpet. However I accept that is how he wants to deal with it and that is absolutely fine. He is coping quite well I feel, very positve and trying to be active to keep moving.
How long has your husband been living with PD?
Hello Lizzy. I feel a bit of a fraud as hubby’s diagnosis has not yet been confirmed. Waiting for next consultant appt then hopefully DaT scan.
Not quite the man he used to be but then, he is 64 and it gets to us all. My instinct and own research make me think he does have PD, and 2 appts in so does his consultant, although not sure after inconclusive course of Sinamet.
I just want to reach out to you to say you are not alone. I discovered this forum last October and found support and compassion, and want to extend the same to you, although I am not sure I am offering the best support.
I am sure you are doing this already, but do your own homework and make a list ahead of any appt, and don’t be afraid to be candid with consultant.
I am still wondering about other possible diagnosis, but I think you are further ahead of me. Take care of yourself, and it will be good to hear from you. I have not been sleeping much since last year although I know it’s important. Take comfort in your inner strength.
Hi soph21,
Nice to hear from you and the position you are in.
It took months of trying to encourage my husband to go to the doctors when his right hand started shaking over a year ago. His mum has an essential tremor so he just put it down to the same thing. To cut a long story short he eventually went to the Gp who reffered him to a neurologist. However because of covid nothing was happening so he decided to go private using his works medical insurance. I’m so glad he did as he got an appointment within two weeks and was diagnosed within 10 mins of that first appointment.
It wasn’t a shock to me at all but it was to my husband. I guess it would be when it’s yourself that’s diagnosised. Thankfully he is a very positive person and will never allow it to beat him. He is keeping active and just getting on with it. I myself am trying not to read too much on Dr Google as I know its pointless when each person with PD is different. So I am just trying not to think too much about it and getting on with living.
The most frustrating part is my husband is on a 3rd different drug and so far none of them have had any effect on the tremor. If anything it has made his tremor worse. It does upset at times when I see that he is shaking so much which is all the time really. We do know it’s very early days and at the beginning it’s all very much trial and error to get him on the right drug. Hopefully that will happen and then things will settle and we can really enjoy life.
Hope your husband gets answers soon. I think the not knowing is the worst part of it all. Although the diagnosis is a shock at first it is also a relief to have answers.
Thank you once again for reaching out.
Be nice to chat again
Hi Lizzy, I am new here too even thought my husband was diagnosed nearly 8 years ago when he was 55 but he had been going to the GP for years with various different ailments, which were all connected to Parkinsons. It was only when I researched it myself and went with him to the GP that they finally diagnosed him. I do not have any contact with anyone else who is in the same position. My children have all moved away to other parts of the country and world and I am very lucky to have a best friend to chat to but it would be lovely to have contact with people in the same position as myself. I hope progression is slow for your husband, everyone varies I’m sure.
Tina x
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Hi Lizzy, I too am new to the forum. My husband (70) was diagnosed 6 years ago but like most has probably had PD for a few years prior to diagnosis.
For the first few years things didn’t really change that much and once we got into the routine of taking meds etc, we just tried to forget it and get on with our lives.
Like everyone else, the pandemic was a major blow and the lack of face to face apointments and lockdown isolation, started to have an impact on how we dealt with it on daily basis. Three months ago he had a total knee replacement from which he made an amazing recovery and is now at least free of the debilitating pain and can walk much better.
However he was in hospital longer than most (7 days) and when he came home his PD symptoms seemed a little worse than usual. Since then he’s had a couple of UTI’s each of which have seen him hospitalised for a few days at a time. Needless to say each time he’s been admitted, his meds have probably not always been given on time and so the PD hasn’t been kept under control. I’m now constantly worried he’s got another UTI, because unfortunately he doesn’t seem to feel/have any noticeable outward symptoms.
Sometimes it would be reassuring to converse with other wives/carers about the constant pressures of living with this most nasty disease and the impact it starts to have on a relationship when you start to take on more and more of a carer’s role than that of equal partners in a marriage.
Where we live there doesn’t seem to be any local groups that are currently open to actual meetings, only by zoom etc, so I’ll keep checking out the forum. Hope you feel much better knowing that there’s so many of us out there if you ever need to talk. Take care.
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Hi Ladies,
So sorry only just noticed your replies.
It would be so good if a few of us came together on this chat for a natter about things, doesn’t always have to be about PD we can chat about life in general too!! It seems we all have different stories of how and when our husband’s were diagnosed.
I am so sorry you are both going through this disease with your husband but coming together on here and supporting each other will hopefully help us all.
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Hello Lizzyg, hello ladies,
I’m not always the quickest to reply!
It’s good to read you all and know that we are not alone on this journey.
My current battle is trying to find travel insurance for hubby who has not had his diagnosis confirmed yet. No one will touch him until we know one way or the other. Our current insurer has even withdrawn cover for the other med cons previously declared and covered! I wouldn’t mind, but we’re not exactly going on holiday as I need to visit my ageing father in France when I can, and he has an upcoming appt I could do with driving him to next month.
I could bore you with the whole saga (excuse the pun), but I will spare you!
Sending positive waves to you all, and looking forward to reading you soon.
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Hi lizzy. My husband is now 6 years into diagnosis.
He avoids reading up on it most of time. I don’t. I like to know all the variables out there. It helps me cope.
Have seen the PD nurse or specialist for 2 years now due to covid.
My husband has deteriorated quite a bit during this time.
I feel those with chronic diseases have been left to just get on with it… That’s my moan for today!
Hi Jandc, I feel much the same as you. My husband is also 6 years on from diagnosis and up until about a year ago his symptoms, although not mild, were under control with his meds and with no other symptoms appearing.
But after he had his knee replaced last November things seem to have taken a downward turn with new symptoms appearing. These include extreme sleepiness, has had several UTI’s from which no symptoms manifest, increased difficulty getting up from chairs and postural problems with extreme leaning to the right. This makes me very anxious when we are out having a walk as he looks so unsteady. Ironically, we live in a house with stairs and he manages them fine. The knee surgery was a complete success and surgeon pleased with his range
of mobility/recovery post op considering he has PD.
I can only conclude that the time he spent in hospital (7 days) plus another two admissions of 5 and 2 days in the last two months with UTI’s have had a detrimental effect on his condition as hospital is not a great place for pwp. As much as they attempt to give meds on time, every time, it is nigh impossible for them to do so as they are understandably busy with other patients. Just hope he can get back on an even course very soon. Take care.
Hi Lizzy and everyone. I’m also very new to this as my husband is waiting for a confirmation of his diagnosis following a DAT scan. Unfortunately it’s likely to be Parkinsons Plus. I know how you feel about travel insurance Sophie as we have a hollday to Croatia( booked pre pandemic) in June. Our Nationwide flex insurance will cover my husband’s pre-existing conditions but not PD as without a formal diagnosis they can’t screen the condition.
Hello Ladies,
Lovely that a few have you have posted. Really feel we could all help each with any questions we may want to ask each other or just for support. Like travel insurance for example, I didn’t even think about it being a problem but I guess it’s bound to be. It would be great if we can all share anything we find out regarding travel insurance.
Also there is absolutely nothing wrong with having a moan on here to, we have to off load somehow so why not on here as we all know what each one of us is going through.
I for t one am being driven potty by my husband’s continuous shaking. The tremor has got so much worse since going into medication and surely this is never right. He is just about to start a different medication to see if it helps, keeping my fingers crossed.
Hello Lizzyg, my husband has tremor predominant PD.
I know what you mean. Sometimes the tremor is so bad he can barely eat a meal and other times quite calm. It is getting worse 6 years on. I honestly think it bothers me more than him. It’s the tremor that can make him look so frail and is a constant visual reminder of this horrible disease. He isn’t a candidate for DBS which seems to be the best way to control the tremor. I remember the consultant saying to us at his diagnosis that his tremor would be difficult to control. He added Trihexphenidyl to take with the Sinemet but the side effects of short term memory loss and the fact it didn’t seem to help much, resulted in him stopping taking it. He now just takes Sinemet 25/100 3 times daily and 8mg Ropinerole once a day. I’m constantly trying to find out which other drugs will best control tremor and am even looking into CBD oil as last resort…
Hi Jean
I wouldn’t mind but my husband’s tremor wasn’t half as bad as it is since starting medication. He was only diagnosed in November and I am sure the tremor is getting worse by the day with the drugs. I feel he would be better off being off the drugs. I think I’m the same as you where it effects me more than it does him.
Hi Lizzy, it’s very early days for you and if the meds he’s being prescribed aren’t helping, I’m sure the consultant will try something else. Sinemet (levadopa) seems to be the first med prescribed upon being given a PD diagnosis. May I ask what he is taking? Sometimes these meds take a while to work properly or need to be increased. This disease is so complex no wonder we all get so stressed when we become carers. I must admit I coped ok for the first few years as he was still active and able to drive, go to the gym etc. But during the last year the PD seems to have progressed and I’m extremely concerned about what lies ahead… It’s so difficult when you see other couples of same age out and about and enjoying an active lifestyle together. Things I certainly took for granted but not any more. My husband is ready for bed most nights by 8pm as so tired. We no longer enjoy settling down to watch a film together and going out in the evening is unheard of. My advice to anyone just diagnosed is not to put anything off til later. Life is for living now, this is as good as it gets I’m afraid. Hope you get some help from your consultant and his tremor settles down. Take care.
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I like to read about others on here going through the same thing,I am starting to struggle now hubby was diagnosed 12 years ago at 55 a shock I was trying to stay positive for years but now the last few months has got a lot worse all aspects physical and mental.
i
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Hello ladies,
Sorry to hear things are getting tough for you both with your husband’s disease progressing. I suppose we always have to be prepared for that happening. Try not to think about too much how other couple’s are living their lives as you never know what is going on in anyone’s lives. Jean do you have any hobbies you could do of an evening. Have you even thought about joining a walking club so you can still go out for walks.
So far my husband has been on Rotingrole (not sure If spelling is correct) and at the moment he is on patches. The patches have been awful withakinh the tremor loads worse. He is about to change again but unsure what to at the moment.
Please don’t suffer in silence ladies, come back on for a chat. Xxx
Hi Lizzy, nice to hear back from you. Today has been a good day! It looks as if he may have had another UTI which was making him very unsteady and more shaky.
Hopefully the antibiotics the GP prescribed as a precaution are beginning to take effect so fingers crossed! We have had one of our sons staying this week and I must say it makes such a difference in how I feel. I’m sleeping much better and more relaxed. I’ve been out for a lovely walk in the sunshine today with my best friend (who’s husband ironically also has PD)! He was diagnosed about four years before mine so what’s the odds on that happening!? Obviously I have someone with whom to share my worries with but their symptoms are quite different so there’s no point in making comparisons. I am trying to locate a group in our area as I think the time has finally come for me to accept that we are going to need as much support as we can in the future. As I said it’s very early days for you. Your husband’s PD could progress very slowly. I wish you both well. Oh, and you mentioned hobbies, I’m an avid reader, which I keep up with, but by the evening I’m often so tired that bed is the only place I want to be!
Morning Jean,
Uti can throw off some very odd symptoms can’t they? Hopefully that’s what it was and the antibiotics will clear it up.
Gosh how very bizarre that your friends husband has PD as well. I guess that sums up just how big PD is really. Although they don’t share the same symptoms it must be good to have a friend who knows what you are going through.
Lovely that you have had your son stay for the week. Having someone else around the house to chat to can be a blessing.
Yes it’s very early days for us and I already feel I have learnt a lot about the disease. Although most is what I have read and I know you have to be careful with that and not to think of the worse case scenario. Our 16 year old daughter was diagnosed with crohns disease just over 4vyears ago. I made myself quite ill at the time by reading all sorts about it and thinking about nothing but the worst. So far it has been totally the opposite and she has been thriving since being put on maintenance treatment to control the disease. We have certainly had our share of ill health in our family but I must say I did learn from my wrong way of handling my daughters diagnosis and I have been much better with my husband’s diagnosis which has helped me be more positive.
Welll the weather is meant to be lovely the weekend so you enjoy it. Xx