Morning Lizzy, sorry to hear your daughter has Crohn’s, and so young. But it sounds like it’s under control and she’s doing well. Long may that continue. We all deal with things differently and just wish I was blessed with a more patient personality but you can’t change the way you are I suppose. You just have to get on with it as best you can but I have found it very difficult gradually becoming my husband’s carer. Prior to diagnosis we were both active hillwalkers spending every weekend walking in beautiful Snowdonia. But I suppose at 71 we’d have slowed down a bit by now anyway. I have no idea how difficult it must be for those diagnosed much younger. My heart goes out to anyone facing this cruel disease with young families. Let’s all hope and pray that a cure isn’t too far off. The weather is indeed looking lovely. Enjoy the sunshine and keep smiling.
Hello Ladies
Your stories are inspiring through the resolve you are showing, each in your own way. I know I have a lot to learn myself, trying to strike a balance between too much reading and ignorance. And then there is patience… Indeed!
I guess part of the trick will be not to look too far into the future at any one time, as that might be a bit too scary. But I am a planner, and I always tend to foresee so many steps ahead… Until I get side blinded!
I hope we can all enjoy a lovely bit of sunshine this weekend and brush some our worries away. Thinking of you all. Speak soon.
my husband was told in november he had it but before that we have had a bad couple of years
colon cancer ljust getting over that told it had gone to his liver then 8doses of chemmo before chemmo finished told he had parkson could go on tablet till two weeks ago had to go through cancer on our own due to conovis but hope to get some advice on this what to look out for thank you
Hello Ladies and welcome,
So glad you have joined to share your stories, I am finding it helps to hear from others and really hope it will help you. Trevann what a challenging few years you have had. Having to go through a cancer battle with your husband during the pandemic must of been very lonely and worrying. To then be given a PD diagnosis on top of that. I do hope now things are getting back to normal you can get some support. Does your husband have a Parkinsons nurse? How about yourself to you find time to take time out for yourself? You must feel exhausted and deflated. However at the same time all these challenges will only allow you to become a stronger person I would imagine.
We are all here for you if you feel you want to chat about anything. I am completely new to all this with my husband getting his diagnosis in November too. I do understand how important it is to talk yo others though which 8 am always happy to do.
Morning Jean,
Thank you for your post. You would be amazed how big crohns has become in children in the UK. There are some amazing IBD centres in the UK that look after our children so well.
Hi Lizzy, so glad to hear that your daughter is getting the best of care for her condition. We are very lucky in the UK to have such a brilliant NHS and other services for children who are very ill. It’s a beautiful day so I hope you can get out and enjoy it. And to anyone else looking in on the forum I hope you and yours are having a ‘good’ day. Carpe Diem…
Hi ladies, so good to see this chat. Hubby was diagnosed formally in Feb, although the consultant is not clear whether it is Parkinson’s or Parkinson’s Plus. Hoping to query it at the next appointment. We out with friends last night and hubby was full of beans and chatty - was lovely to see as he has been extremely low for months. It is really hard when I mentally play the tape forward. I guess it is just a massive shock to us both:
Hi ladies,
I have hit a low point in life and wish that I had someone to talk with who also understands this disease. I was diagnosed in 2011 at age 55. I’m managing fairly well on Sinemet at 1000mg a day but it is a complex dosing schedule and I am wearing off sometimes after 2-1/2 hours. My husband has been showing parkinsonism symptoms for years and after many doctor appointments, tests, etc., was diagnosed with Multiple System Atrophy in January. His quality of life is already worse than mine - he no longer drives, stays home except to walk the dog and spends a good amount of time in bed. I have no idea how we will manage going forward. My husband seems unable to deal with anything beyond getting through his day so I’m not able to talk with him about our future. I know our situation is unique but there must be couples in similar circumstances with one having PD and the other having another serious health issue. Any words of advice would help. Iris
Hi RachRob, and nice to see you have joined in with the conversation. Sorry though that your husband has been diagnosed with PD/PDPlus. I don’t know what PD plus involves but would guess it’s similar to idiopathic PD in as much as the many varied symptoms. It’s always a great shock to get the diagnosis of Parkinson’s. We are 6 years plus now but I can still recall the shock when the consultant confirmed it. I think it upset me more than my husband as he’d been back and forth to the GP only to be told his ever worsening tremor could be stress related or psychological! He was even given antidepressants at one point which made him so unwell but at least proved to be the catalyst for me to demand further investigation. He then had an appointment with a consultant’s registrar who, after conducting some lengthy tests to rule out PD, came to the conclusion that he didn’t think it was PD (at that point). So he continued with propanalol as prescribed for stress/anxiety until things became untenable and I got back in touch with the neurologist’s secrearty. I said I was happy to go private as we were desperate, but she was brilliant and we got an appointment with the consultant within a week! We were in his office a mere 10 minutes where he simply asked him to walk across the room, examined his joints, asked a few questions and then told him he had PD! So in a way, for him, although it certainly wasn’t what he’d hoped to hear at the age of 65, it was a relief to know at last what was wrong.
He started on Sinemet (and trihexphynidyl) to see if that would ease the tremor which by this time was his main symptom. This has remained the case over the years but as PD is the disease that likes to keep on giving, other symptoms have sadly been added along the way…Glad you had a good time socialising last night! Can’t remember the last time we had a night out as he’s ready for the land of nod most nights by 8.30pm. I’m hoping the lighter nights will help and we can at least enjoy sitting in the garden in the evening with friends and family. Have a good day
Hello Iris, just seen your post after replying to RachRob. I’m so very sorry you are having such a tough time of it. I really can’t imagine how anyone copes with PD and then finds their husband/wife/carer becomes unwell themselves. Life can be so cruel. I really hope you get some wise words and support from the ladies on the forum dealing with something similar. Each one of us is dealing with PD but in many different ways as it’s such a complex disease. In your case it is you with PD and I hope that you are still managing well and your husband’s own newly diagnosed condition remains stable for a long time. Fingers crossed for you both and wishing you well. Here for a chat if you need to offload…
Hi everyone.
My name is Ros.
My husband was diagnosed with PD about three years ago because he had a tremor.
For the first two and a half years he was fine but suddenly around Christmas time he became anxious and depressed.
This ha become worse and worse. He was diagnosed with mirtazapine but that caused him to become very dizzy so he refused the medication.
We were never referred to a Parkinson’s nurse and I am struggling to find someone to help us.
I would be happy to see a doctor privately. We seem not to have a life now. I have lost my dear husband.
Can anyone advise?
Welcome to Rach, Ros and Iris,
So glad you have found this group as it sounds like you all need some support.
You all have so much a very different life you are dealing with and it is such a difficult task trying to find the right support. Hope you all find it helpful to least have others to chat to on here.
I will do an individual post to each three of our new ladies as its hard to remember the stories that go to each name.
Hi Rach,
You are very new to PD just like me, my husband was diagnosised last November.
It is a big shock when you get the diagnosis, we all knew something was wrong with our husband’s and like me had a feeling it was PD but it’s still a major shock. I guess you still feel in limbo until you find out the definiate diagnosis.
So good you got out with your husband and friends, it certainly does make a difference when they are more relaxed and enjoying themselves. That’s why we need to focus on the here and now and not get carried away with what if"s.
Keep chatting to us. X
Hello Iris,
What challenging times for you with both you and your husband dealing with illnesses. It must be bad enough trying to look after yourself let alone your husband as well. Do you have a support network family, friend etc who help you?
I am so sorry you are going through these worrying times. Please come back and chat anytime. X
Hello Ros,
It certainly makes you realise how the disease can change throughout the years. It must be sad to see your husband in low moods. Could you ask your Gp to diagnosi your husband to a parkinsons nurse? You certainly could do with one right now for advice and support and medication prescribed for his low moods. Maybe a bit of encouragement is needed from the professionals in taking medication to help us what is needed. X
Jean1 and Lizzyg,
Thank you for your kind words. We do have family nearby but everyone is crazy busy these days. Right now we are managing our day to day living but it is the constant worry about what comes next. It helps to read others stories and to learn how they are dealing with all the uncertainty that this disease brings to us. Take care, Iris
Hi Iris, yes you’re right. Everyone is so busy and if you’re like me, try not to bother them. One of my sons lives in Ireland, the other in Buckinghamshire and the other in North Wales, about 40mins drive from us. He and his wife both work and also have a young son so weekends for them are full on so we don’t see a lot them. But we’ve had two visits in the last month from my son in Ireland and last week my son from Bucks! Needless to say I was so pleased to have them here and it was lovely to go to sleep at night knowing I wasn’t here on my own if there was a problem. But they can’t stay forever and we just have to keep on going don’t we? I hope you are getting some good support and if not don’t be afraid to ask. You need to look after yourself too. Wishing you both well. Enjoy the lovely sunshine. Take care. Jean
Love to chat. It can be fairly lonely. My husband was diagnosed 3 hrs ago age 56, he now has dementia too.
There is a lot to cope with but life is ok.
Hi Lizzie and all you other wives/ partners. My husband aged 60 was diagnosed 3 weeks ago after waiting 10 months to see the neurologist, he’d suspected that he had PD many months ago after reading and watching ( YouTube) everything about PD. He’s just started on the higher dose of Simnet after a week of being on the lower dose with absolutely no effect, he’s also been prescribed sleeping pills due to the constant hand tremor which is preventing him from sleeping at night, he’s anxiety levels are through the roof as the medication hasn’t yet kicked in and the sleeping pills were only prescribed for a fortnight, he’s groggy, lethargic and anxious throughout the day thinking about how he’s going to cope with the nights if the tremor is not under control before the sleeping pills run out, I’ve not read any stories on here about others with the same problem, hoping someone can give advice.
Hi everyone.
My husband was diagnosed this week. He started with a tremor at the beginning of lockdown. Eventually he saw his GP who diagnosed ET but referred him to a neurologist. After several months he got his appointment and Parkinson’s was diagnosed. In a way it is a relief, he had turned into an old man (he is 72) in the last couple of years. I know the nature of the beast is to be unpredictable and I’m an awful worrier, but I have had to be very firm with myself . I know he won’t join any. groups, he even commented that he didn’t know why the nurse is going to contact him. His greatest love is his cars and he has been told he is still ok to drive. I have turned into a carer of sorts over the last couple of years and I feel it is me that needs the support! He comes from a family that puts their heads in the sand when it comes to medical problems.