Hello everyone I’m a wife of a PD husband and he’s 50 years old very active very fit person , our journey started a year and a half ago with a frozen shoulder so the doctor said after extensive physiotherapy which didnot work he was told he had depression so he seen a councillor which still didn’t work , his symptoms were a stiff shoulder and he felt vague , I also noticed he smelt different ,
For a long time I pondered and watched him change from a confident man into a man who felt strange and worried, I am a end of life nurse and on a night shift I realise it was a neurological problem so I contact the best neurological surgeon in our town and made a private appointment for him , and as soon as we walked into the door of the doctors he said he knew straight away what it was !!! It was Parkinson’s diseases and he also told him that he has most probably had it for over 2 to 3 years , we was floored !! And to be honest I fell apart ,he has a very physical job and luckily that is keeping him going we haven’t told anybody about his illness and I’m so glad I found this site ,we don’t talk too much about it to each other he is concentrating on hiding it from his boss and friends ( our home comes with his job and we worry when it gets bad for him where are we going to live) I don’t know what we are untitled to off the government if and when we finish our jobs the consultant is fantastic and we receive very good medical care ,but the emotional side of it for me is very hard and I find myself crying a lot
Sorry for the long winded message I needed to get this off my chest
Hello and welcome, @MyHubbyat50. That’s a very heartfelt story, not longwinded at all. Thanks for sharing it with us. You’ll find our forum members very friendly and helpful and they’ll be along to welcome you shortly.
What a powerful thing that you were able to notice a change in smell, and knew what to do. You’re also very fortunate to have had access to excellent care from your healthcare team.
How do you feel about your husband hiding his Parkinson’s from work colleagues? Have you discussed this together? This must add to your emotional state. It’s quite natural to worry about the future, and we’d advise you to learn as much as you can from this page. Our helpline can also advise you if you call them on 0808 800 0303.
Even though you are used to caring for people, caring for someone you love can be surprisingly tough. I’m sure you already know about taking care of yourself right now but here’s a reminder.
Best wishes,
Janice
Forum Moderation Team
Hello Janice ,
It is difficult sometimes to not blurt out he got PD to our friends and his colleagues but I’m guided by him at the moment and he is definitely not ready to tell anyone , we are also making excuses to not go to suppa with friends and works do’s too because his throat muscles sometimes lock and he feels like he’s choking and he get embarrassed even with me when we are on our own so in a crowd he would be mortified, it doesn’t happen a lot but when I’d does he gets upset , it takes 120% effort for him to not show anybody he’s has PD but when he shuts the front door after work he’s relieved and he relaxes and rests ,
It’s sounds awful but we have a fantastic relationship and we laugh a lot and on our days off we enjoy going to the beach and walking ,it’s not bad days and it a challenge but I won’t let it get us down
Hi. I was 60 when I was diagnosed with parkinsons, I am now 64. I was always fit and active and sporty, as a young man I boxed, played rugby, rowed, ran marathons. When I first got symptomsof PD in my 50s I started getting tired easily and started being clumsy and dropping things, awful stiffness in shoulders and legs which I put down to getting older. After diagnosis I think we all go stages of denial, shame, blame until we accept it. I totally understand your husbands feelings about not telling workmates, perhaps he should talk to his Parkinsons nurse about it. I felt the same it took me a couple of years to accept it. I have met some great people who happen to have Parkinsons, I read about Billy Connolly and his attitude encourages me. I am still rowing and do a bit of boxing training and I paint. I dont think being diagnosed with PD is the end for me it was the start of a different lifestyle. I did a clinical trial for new PD medication and now I dont have that feeling of shame about having PD, I wear a wristband that says I have Parkinsons, I carry the Parkinsons card, I am not ashamed of it in fact I am now proud of being in the Parkinsons club because we carry on as best we can and look for ways to carry on. It must be hard for the wife/husband/partners/family to watch and worry their loved ones cope with PD, I know I wouldnt be where I am now without the support and love of my wife Rosa and the rest of my family. You are not alone in crying, I know my wife has and so have I. I hope his medication helps and things improve, it takes a little time, your not on your own, you can claim personal independence payments (PIP) for financial help.
Kind regards and best wishes
Jack
Hello myhubbyat50 and welcome to the forum
I just wanted to reassure you that the rollercoaster of emotions you are feeling is entirely. normal. Given your job I am sure you know that but sometimes when something is actually happening to you, you need someone to tell you out loud.
You will understand too, again because of your work, that keeping their diagnosis or prognosis is something many feel they must do especially in the early days for a whole host of reasons. I have no doubt too that you will also know that not telling people of a diagnosis doesn’t mean that other people do not suspect something is going on they just don’t know what and that is because a large part of communication comes from non non verbal cues which are difficult to stop completely and he is probably leaking non verbal cues even if not speaking… That said, until he is ready to tell people you have little choice but to respect that. Having said that in turn, he must recognise it is his secret, his choice and he is potentially putting you in a very difficult position of being piggy-in-the-middle and I do think you need to have some kind of conversation as to how you might manage this if people start asking you if there’s anything wrong for example. And he can’t assume you are willing to collude in his secret unless you choose to. I say that not to force his hand but because he needs to understand that there are two of you in the relationship and the awkward questions may well fall to you for fear of upsetting your husband if they are wrong.
I think the other thing you can start to do now is find out as much as you can about what the state of play is about your overall situation. Off the top of my head I would put (in no particular order)
Contact the local council housing department and find out what the position is regarding your housing situation if your husband has to give up work. Locally I have been able to register with the council for their flexi care scheme (different areas call in different things) which is basically a block of flats with some communal room and care staff on site on a forward planning basis. My name sits on the register, I confirm each year I wish to remain on the register and I get a couple of waiting points. It means I am off the starting blocks should I need to move. Maybe there is a similar scheme near you but you do at least need to know what to do and what your options are if your home is at risk
There is a lot of support available to allow people to continue to work for as long as possible. If your husband is having difficulties managing his job ideally he should speak to his manager about the problems he is having but he does not have to say it’s due to Parkinson’s unless he wants to. There’s lots of information about this on the internet and the Parkinson’s UK website is a good place to start
.Benefits calculators - GOV.UK This is a good place to begin to find out about what you may be able to claim also make use of any welfare rights organisations you may have locally, not forgetting Citizen’s Advice.
Doing things like this, your own forward planning may help prepare you for what you probably feel is a very uncertain future especially with regard to your home and put you in a stronger position to deal with it all because you will have done some groundwork… It will also give you something concrete to do and probably make you feel useful and that you can contribute and support your husband in a proactive way… There are probably other things you can find out about to help with future planning which remember you may not need for a long time if at all, as Parkinson’s in most is a slow moving condition; but better to be prepared than suddenly find yourselves in a difficult situation bit knowing which way to turn…
Finally don’t go mad trying to find out all sorts of information all at once. Take it steady and don’t spend hours on it. Suggest you get a notebook, binder or some kind of online record to note who you spoke to and when, what was said and what literature you got your information from
I hope this helps a bit and you find something useful in what I have written even if you don’t think it is immediately needed - you can always put it away and take it out as and when.
My best wishes to you both.
Tot
Hello my hubby at 50. Have you spoken to the helpline(number at top of page) They will be able to tell you if there is a support worker in your area who can either help you with the legal side of your job/housing or steer you towards someone who can.
Hi there
I know it’s a bombshell when you first get diagnosed and it takes a while to sink in.
But for some it takes can take years & years for it to progress.
I was dx at 41 and I am now 52 and I am still working , I had DBS fitted last year and it’s been a life changer for me.
There are meds out there to help, and they do. It’s just trying to get the right ones and the dosage right for your husband that takes time.
He will be given appointments every. 6 months or so with the neurologist. My advice is that if the meds don’t seem to be working then phone them up and tell them. Don’t wait until your next appointment!
I know it’s hard but he needs to try to relax and take his meds as any kind of anxiety can make any small symptoms he has worse.
Liam
Many thanks to you jack , it so reassuring that we can discuss our problems on here and it’s a great help thank you
Thank you , I bought a note book today and I’ve started the ball rolling with the council, you have been so helpful xx
Thank you Liam , I’m grateful to know he is not a lone when he’s ready I will get him to read all these messages
Many thanks that’s very good to know xx
Hi there,
My husband was diagnosed last year at age 49. I don’t know how long ago your husband was diagnosed, but if it’s fairly recently, then you’ll both still be going through all the emotions that come with noticing something isn’t right, right up to the shock/relief of diagnosis and then coming to terms with it. I think initially, everyone fears the worst but the passage of time really will help to settle those thoughts down.
Although nobody can tell you how slow or fast the progression may be, you will learn to just accept the changes as your new normal and get back to daily life.
I was incredibly surprised but proud of my husband when he started telling all our family and friends and then his work colleagues of his diagnosis because, for him, that went a huge way to him accepting his diagnosis and made him relax a lot as he had been worried about people maybe noticing things about him. Once he’d made them aware, then he stopped becoming self conscious and his anxiety levels dropped. It’s a very different and personal journey for everyone though, so you can only do what you think is right for you.
I can say though, that we got involved online with Parkinson’s UK and joined the Young Parkinson’s Group, who do an online conference and little mini events throughout the year which are a mixture of specialists doing sessions and other young people with Parkinson’s doing sessions and these were a great source of information and comfort. It’s a fabulous community which is so friendly and it’s been great to be part of it. For myself, I was delighted to find they also run a Friends, Family and Carers group that I’ve met online via Zoom once a month, and we’ve had an absolute hoot. I don’t think we’ve spoken about Parkinson’s once yet. It’s been a great comfort to become part of a welcoming, friendly community.e.
Your husband may find, his employer, has no problem with his diagnosis and as he is able to do his job then they will likely have policies in place on how best to support him.
Good luck with everything.
I am lucky that I work for a Local Authority so how have been treated might not apply to all, although it should IMO.
From day one when I told my manager of my diagnosis I was given a health and wellbeing passport and was then sent to occupational health to discuss any reasonable adjustments that might help me stay at work. Six months later I asked for a 3 day week in a different role which was agreed and 8 months after that a 2 day week was given when I requested it. This was in June and has led to a great balance of work life, home life and cannot do a thing at all life. I am the happiest I’ve been for 2 years.
None of this would have happened had I not told my employer.