We are just waiting for the GP to ring to start the process of diagnosis for my lovely husband and I’m just devastated. We are pretty sure the diagnosis will, eventually, be confirmed he has so many red markers.
He is almost 70, and I am 10 years younger. I can see nothing but misery ahead for both of us, although he is being quite pragmatic about it all.
I just don’t know who we will manage things. I have no friends locally, we moved here about 8 years ago, downsizing to a bungalow, we are 250 miles away from my husband’s son.
I know that PD usually progresses quite slowly but as we don’t actually know when it started my husband could already be way into his journey.
All the plans and dreams we had are now shattered, I can only see misery and hardship going forward now.
How do people cope with caring for someone with this horrible disease?
Am I being selfish thinking of the implications on me?
A friend of ours was diagnosed 2 years ago and his wife has said he has changed so much already, she thankfully has her son living nearby so will have some support.
My husband has said we can sell up and move down near his son but we wouldn’t be able to buy a bungalow there as house prices are far higher than where we live.
I want to extend my heartfelt sympathy to you and your husband during this difficult time. It’s completely understandable to feel devastated and uncertain when faced with a Parkinson’s diagnosis, especially given the impact it can have on both your lives.
Please know that you’re not alone in navigating this journey. Remember that it’s important to prioritize your husband’s health and well-being, but it’s also essential to take care of yourself.
If you ever need someone to talk to or seek advice, our helpline is here for you. You can reach us on 0808 800 0303, Monday to Friday, from 9 am to 7 pm. Our team is here to listen, offer advice, and provide assistance in any way we can. Additionally, our website offers a wealth of information and support services specifically tailored for newly diagnosed individuals and their loved ones: Newly diagnosed with Parkinson's | Parkinson's UK
I’m sure other members will jump in to welcome you. Meanwhile, I’d encourage you to look around and see what you discover.
Please don’t hesitate to reach out if you need assistance or simply someone to listen. We’re here to support you every step of the way.
Hello TroubledWife … I am 70 & I have Parkinson’s. I live on my own & manage quite well. Every Parkinson’s journey is different. For me the shock was the diagnosis following a positive Datscan, after that life just goes on. Over worrying doesn’t do any good. Symptoms are treated by medication which helps. If you have any questions do ask. The Parkinson’s nurses here are very kind & worth talking to.
There are worse things you can have than Parkinson’s.
Very true Steve. I live with secondary cancer as well as PD! I’m 55, my wife 51. Yeah sure, dreams are sometimes shattered but we make the best of things. We’re planning a get away at the end of the month. We have a beautiful 2 yr old Grandson who keeps our spirits lifted. It’s not the end of the world . I go through life remembering sadly, there’s someone somewhere a lot worse off than myself.
We have to rise above this, stay strong and be positive.
Lots of great medication options out there which help massively.
Cheers
Hello my husband has Parkinson’s (he is 79 and I am 54) and he was officially diagnosed 10 years ago. It is much more difficult now than it was at the beginning. But you will have many years where the effects will be limited and you will both be able to do things together untill it reaches an advanced stage.
HOWEVER, I would suggest that you do try to move closer to your support network. I’ve found now that things are difficult that it is a true blessing to have close friends within one hour to come over and to keep me sane. I also have support from my Quaker meeting/church where I have been going for over 20 years. Our 19 year old son lives with us and is a great help.
But, my husband own 44 year old son and his wife are not particularly helpful and they just live 45 minutes away! And husband has had a very good relationship with them both and they used to see him much more than they do now! Basically, I think his son can’t deal with seeing the deteroriation of his father. So before you move closer to his son, really check whether the son will help and be supportive or not.
I cannot stress this enough… and I say this as someone who was very upbeat and positive about living with a partner with Parkinsons for 10 years… it will be very important to you down the road that you have a support network and friends. You really will find things in 10 years getting more limited for your husband and you will have to limit how far you can go to visit friends and family.
You might not afford a Bunglalow but you probably could find a good ground floor flat. When moving, also look to see what support you might get from the local authority… my local authority paid for a full bathroom refurb to a wet room which would have cost us £15,000 but they did this as they waived the means testing for this. Invaluable.
Thank you for replying …I appreciate every person diagnosed with PD has a different story to tell…the lady along the road from us is well into her 80’s and lives alone with carers coming in 4 times a day. I guess I should be trying to focus on people like that, not the people who sadly get confined to a wheelchair or who have the struggle with dementia and just hope we don’t end up going down that road
The stand in GP rang yesterday and said it could quite easily be some of the medication he is on which are causing his hand to shake…possible I guess but more than likely it will be PD as he has other red flags.
We have made a decision that if things get bad, we will sell up here and move down to where his son lives…house prices are a lot higher there but I’m sure we could find something…I feel better knowing we have made that decision…my other worry after my husband is our lovely dogs, they would probably not be allowed in a retirement apartment and I don’t think they’d be very happy as they are used to a garden…there is no way they will not be coming with us so we will have to find somewhere that suits us all, although I’m not too fussed as long as I have my husband and my dogs I’ll be ok.
I’ve already mooched the subject to his son, I’m pretty sure he will be ok with it … we have 2 Springer spaniels aged 5 and 4 and I have to consider them as well, they are family…
I don’t have any friends here, my sister and her family all live in Spain…I know if they were still in the country they’d be a huge help…perhaps they might return one day…I can only hope…
It’s very true there are many people with far worse medical conditions…I think it’s just the shock of everything happening so suddenly…at the beginning of the year we were in Singapore and Australia and he was snorkelling the Great Barrier Reef…he’s absolutely fine in himself, apart from his shaking hand, although does have a couple of other PD signs…have to hope this is very early stages and that things won’t progress too quickly
Yeah, it’s a shock alright. I initially had cancer in 2014. That was a shock indeed… I was 45. Had chemo, radio… , surgery, the works! All seemed well until 2019, when my cancer returned as a secondary. Dreams were shattered. Our annual trip to Alberta Canada was cancelled as we were unsure of the way ahead. But at the same time I was noticing slight changes in my left hand and arm. Grip was weakening and strength in arm was depleting. I assumed it was something to do with the Cancer and meds I was given. Long story short… eventually I was diagnosed with PD in 2021. I wasn’t shocked or scared in anyway. In fact I shrugged and laughed at the bad luck I/we were having. As time went on, I began to realise though that this disease doesn’t keep you laughing everyday. When I’m ’off’, I’m off! But when I take my meds and I’m ‘on’, most of the time I feel like Superman.
I think what I’m trying to say is, a diagnosis may be a shock, but it’s not the end of the world. Undoubtedly things will have to change. But rather than use the word change, I use ‘adapt’. Once the right levels of meds have been found, things can be, for the most part, fairly normal.
Cheers
You’ve definitely had more than your fair share of medical issues, my husband has had mobility problems due to arthritis for many years, we are now wondering if they were even due to that at all now…he’s had both hips replaced so obviously there was arthritis, I guess we will see if they start him on medication and he can then walk better, he thinks like you do, live for now and worry if/when things deteriorate.
Now I know my sister will have the dogs if I get run over by a bus and my husband can’t cope with them, which I’ve been really worrying about, I feel more at peace with the lot we’ve had ( most likely) chucked at us.
We are off down south to see our son and grandsons this weekend, we have a few days in Spain visiting my sister next month and then we take our 3 grandsons to Greece in the summer holidays so plenty to look forward to…
We will continue to hope we get to New York next year for our silver wedding anniversary and our cruise home on QM2…
Ah, I know…I wrote my post when I was sad and miserable, a day later, having made a few plans if needed in the future, things aren’t quite as bleak…sometimes letting off steam can make you put things into prospective.
I’m very grateful to the people who have responded to my “woe is me” post and helped me see that things might not be as bad as I first thought…what lovely people
Hello again TroubledWife … Reading your first post am I correct in saying that your husband has seen his GP & his GP suspects Parkinson’s & you are all about to start the process ? As far as I am aware GP’s do not diagnose Parkinson’s & prescribe the required medication. What I think will happen is that your GP will refer your husband to a Neurologist. By examining your husband & doing a number of tests he / she will come up with a diagnosis. However if your husband has “Parkinson’s like symptoms” then the medication will be the same whether your husband has Parkinson’s or not.
There is no 100% surefire way to prove or disprove Parkinson’s in the patient. There is a Datscan [a special sort of brain scan] this measures the Dopamine in your brain.
“Dopamine deficiency can affect your physical and mental health. Many medical conditions are linked to low levels of dopamine, including Parkinson’s disease, restless legs syndrome, depression, schizophrenia and attention deficit hyperactivity disorder (ADHD). Treatments are available to manage these conditions.”
I had a positive Datscan. But other Parkinson’s sufferers have a negative Datscan.
I also had a standard brain Mri scan. Mine was normal for a 70 year old. A brain Mri scan is used to rule out other illnesses.
Depending on where you live you may have a long wait to see a Neurologist. Maybe 6-12 months. You might ask for a private referral if you are concerned c£200 approx,
I live down South may I ask where your son lives? The closeness of good medical GP’s & hospitals is important as we move into older age. I live near Bexhill on Sea & I am very pleased with the medical healthcare I receive.
You mention that your husband has arthritis & it is possible that he also has Neuropathy. I have this as do 55% of all Parkinson’s sufferer’s. Neuropathy gives me mobility issues. I also had swollen feet & stiff muscles & a nasty ulcer on my heel. This was helped a great deal by a drug called Amitriptyline. This also helps my Arthritis pain. I strongly recommend this drug, which also helps me sleep.
He has spoken to stand in GP and explained his symtoms, he has a face to face next week…he is already on Amitripalyne has been for years but i have read that it is one of the medications which can cause shaking, cant seem to win eh? His maternal grandmother had parkinsons but on the other hand his son has said his left hand has always shaken, he used to notice it when he was a child, it was worse when he did archery, obviously this is something i think he should mention although he thinks its not important
We have already said we will wait for the doctor to refer on NHS so hes in the system, but will then go back and ask for a private referral as well.
Our son, i think of him as a son as he has been with us since he was 17 and he’s 40 tomorrow, lives in Gloucesteshire so more south west than south, we originally lived in Somerset before moving to Lincolnshire 8 years ago. Moving nearer our son makes sense to me and i would love to live back to that part of the country, i don’t think i have ever really settled here though.
Yes, it sounds like moving back to be nearer him would make sense and it will be good for you to be somewhere you love… particularly when you are having a down day and if it’s within easy reach of your son, he can come and give you a break… as you and others have said, you are far from those days where you need a break but it will come and better to make the move now I think.
Welcome your husband is the same person at the end of the day i was 36 old yes it did change me where i got to the point my medication wasn’t working 8yrs still going on holidays going to the pub then i had deep brain stimulation that was like getting my life back 11yrs now my balance and walking is getting worse so bought mobility scooter I’m a regular at are leisure centre try to go 5 days week regular excerse is the key just live life to the full and try not to think of parkinsons you’ve got to be positive there’s lots of help out there on this forum. I’m 53 had couple of falls this broke my big toe kicked wall when fell.
But on the bright side going to be a grandad couple weeks and of to turkey 6 weeks just lie in the sun forget a bout pd.But the best thing for PD is exercise There’s lots of medication for parkinsons just finding the right one .Your be fine.
Hi Troubled Wife when I found out that i had PD we sold up and moved into a Anchor bungalow, classed as independent living and you are allowed to have pets, we gave the 2 boys there inheritance then went round the world and seen what we wanted to, we had quite a bit left to enjoy our lives. Yes we sold our house but you can’t take it with you we have never looked back, we have gardners window cleaners and we don’t have worry about maintinace. I know you are paying rent but we are all over 55 in the 30 bungalows, so advice it might not be every ones cup of tea but well worth a look, ps Anchor has joined up now with hanover,
At the moment you can get about 5% interest on savings. If you sold a £300,000 house you would get £15,000 a year in interest to go towards the rent & still keep all your cash.
. I go through life remembering sadly, there’s someone somewhere a lot worse off than myself.
then i had deep brain stimulation that was like getting my life back 11yrs now my balance and walking is getting worse so bought mobility scooter I’m a regular at are leisure centre try to go 5 days week regular excerse is the key just live life to the full and try not to think of parkinsons you’ve got to be positive there’s lots of help out there on this forum. I’m 53 had couple of falls this broke my big toe kicked wall when fell.
There’s lots of medication for parkinsons just finding the right one .Your be fine.