Hi,
My husband started showing signs of PD (unbeknown to us at the time) just before Covid hit. He went from travelling the world in his job which he loved to working from home during covid which was hard enough with 2 youngish children and all his symptoms. As I have previously read, I thought there was something wrong with our marriage but we have been happily married up until then.
His dad has PD so I started to suspect and we got the diagnosis about 2022. He is slightly older than me (I am 51) and we have 2 older teenage kids.
Now 3 years later I am desperately lonely. The children are now busy with their own lives which is the way it should be and I am so happy for them and I am so lucky to have 2 healthy, sensible amazing children. Despite their happiness (and thatâs all we want for our kids isnât it?) I feel so isolated and lonely. My husband and I used to talk about what we would do once the kids were old enough to be self sufficient etc. but now I donât enjoy anything. He hardly talks and falls asleep all evening when we are watching a film and can say nothing between 5-7 hours. He also was made redundant a year ago and hasnât been able to get another job because of his PD. He doesnât come across well as he leaves really long gaps when he talks, if he talks. He does some supply teaching which is good for him but we are currently all at home for 8 weeks of the school holidays (I work in a school) and it is driving me crazy. I have no-one to chat to or have a laugh or just general chit chat and banter that I think everyone just takes for granted. He never shows any excitement or enthusiasm for anything and I feel like my life is over at 52. I have friends and interests and do yoga, mindfulness etc. so am fit and healthy but we donât do anything fun any more and if we try I donât really enjoy it as we donât chat. He doesnât even notice half the time and says he is happy. I just want to have a chit chat and feel visible and worthy of someone being interested in what I have to say. I am not very good at crying so just get angry which I hate but I canât really change that. I also just feel demotivated as whatever I do that I may feel good or excited about, he doesnât even notice. He says itâs his Parkinsonâs but he is not that advanced and donât know if he just canât be bothered to make an effort anymore. When he does try it sounds so forced I just get annoyed. I sound awful but I donât mean to. I am finding it so hard and lonely. It is true what the say the difference between alone and lonely is vast. When I am on my own having a walk and coffee, I love my own company and being alone but when I am with him I feel sooo lonely. Thanks for listening!! x
Hi CoffeeandBiscoff, thank you for reaching out to the forum. It sounds like youâre having a difficult time and weâre so sorry to hear that youâre feeling lonely. Please know that youâre not alone. Weâre here for you and so are others in this community.
It can be hard coming to terms with changes to your life when youâre caring for someone with Parkinsonâs. Itâs really important to look after yourself as well and seek support if you need it.
We have information about what support is available and tips on looking after your wellbeing as a carer on our website here: Supporting someone with Parkinson's | Parkinson's UK
Our helpline is also available to anyone affected by Parkinsonâs. Our trained advisers are ready to listen and offer guidance and support. Itâs free and totally confidential: 0808 800 0303.
We also have a range of local support opportunities which are open to anyone affected by Parkinsonâs. You can find your nearest support offer via our website: localsupport.parkinsons.org.uk
Again, please be reassured that youâre not on your own. Weâre here for you if you need us.
Take care,
The Parkinsonâs UK Moderation Team
Good evening Coffee ⌠I am very sorry to hear that you are felling so lonely.
I am 71 years old & live alone. I was diagnosed with Parkinsonâs in June 2023, although there were symptoms in hindsight 5 years before that.
Three years ago I was playing golf, 6 months of the year living on a golf course in Florida & 6 months living in the Uk. But my Parkinsonâs symptoms and my general health got worse & I can no longer play, so I gave it up and now play Indoor Bowls between 2 & 5 times a week. Without my Indoor Bowls I would live in my flat, on my own, seeing no one & talking to myself & driving myself crazy.
My problem is walking, I can not walk much more than 50 yards without feeling exhausted. If I stand still for more than 2-3 minutes then I will either fall over of have to sit down wherever I am. I cannot go shopping and have to have everything delivered.
I have a spine problem which means sitting down uncomfortable. I am only really comfy sitting up in bed.
Iâm pretty sure I would be difficult to live with. Having said that I am feeling quite happy & content with my life at the moment. I played bowls this afternoon, I enjoyed the game despite losing. Bowling again in a league game on Monday, my team is top of the league & I find this gives me a lot of self worth.
I do have dark periods with nightmares when I sleep. But as I said Iâm happy at the moment.
Reading your post above I can understand why you feel as you do. You had hopes & expectations for your life with your husband & had probably made plans in your mind as to how your life would go from here. But Parkinsonâs had put paid to that.
I wanted to go on a walking / golfing holiday in New Zealand. I wanted to spend my time golfing in the UK with lots of long walks. But I have had to kiss goodbye to this bucket list & be content with what I have. There are lots of people my age worse off than I am.
Now it might be that when you are back at work you will feel better. Good company and a challenging, rewarding career.
You do probably need to have a chat with your husband if you continue to feel as you do & tell him how you feel. Maybe go to couples therapy.
You donât say whether your husband it troubled by his symptoms. Of course fatigue and lethargy are symptoms of Parkinsonâs AND the medication we take. It does make wanting to do anything difficult or not enjoyable.
Very best of luck to you. I think everyone here will understand how you are feeling.
Best wishes
Steve2
Hi CoffeeandBiscoff
I am 56 was diagnosed with Parkinsons 19 years ago. Mywife left me due to Parkinsons. I donât kid myself that I am in anyway expert on relationships.
However I can see there are communication barriers and wonder if counselling can help you get over the barriers. The children are my biggest asset and in my situation have been a god send. I am sure you have people who care about you. Do they know what you are feeling?
If there is anything more you would like to ask please feel free to do so.
Take care
Jon
Hi JonB13, thank you for sharing your experience and advice. Weâre very sorry to hear about your situation.
Please know that weâre always here for you if you need us. Our helpline is just a phone call away with trained advisers who are ready to listen and support: 0808 800 0303.
Take care,
The Parkinsonâs UK Moderation Team
This sounds really difficult for you. I know you say you have friends and interests, and what is most making you feel down is the lack of a connection with your husband, but does your husband attend any Parkinsonâs support groups? I go to one (a Young Onset group so many members are still working and meetings are in the evening) which has a very strong Friends and Families section. They have a breakout at every monthly meeting. It might help you to talk to others who understand some of the particular challenges you face.
Hello Coffee and Biscoff
Welcome to the forum and thatâs a cracking alias youâve given yourself
I hope the replies you have already received have helped and let you know you are not alone here on the forum. I too was sorry to read you are having such a hard time at the moment.
I believe you have correctly identified the root cause in the title you have given your post. Ie âlonely and missing companionshipâ. I do, however, think you have left off the most important part because to me you are specifically referring to the loss of the simple companionship you and your husband shared that seems to have been the bedrock of your relationship. I say this because you mentioned you have friends and interests outside the home, so I donât think itâs true of all areas of your life. Having said that it might also be true that the friendships you have do not lend themselves, for whatever reason, to plugging this hole a little bit which would depend on the nature of your relationship with them. So it may be inaccurate for me to assume that this is so.
Nevertheless, to me it is the loss of the companionship with your husband that is causing you such distress. I am not a doctor and would never presume but it does seem to me that your husband may well be apathetic. Apathy is more common in Parkinsonâs than is often recognised and is different from depression which is what is more commonly assumed. If you look up âapathyâ in a dictionary you will read something like this:
âthe feeling of not being interested in or enthusiastic about something, or things in general.
And a bit more searching brings up something like this;
âApathyâ is a term healthcare professionals use to describe a lack of goal-directed activity and motivation compared to previous behavior. It can also look like a lack of spontaneity, interest or emotional expression. Apathy is a symptom and/or complication of several neurological conditions.
And this:
Types of apathy
Behavioral apathy: Youâre less likely to feel motivated or get started on goal-directed activities on your own.
Social apathy: Youâre less likely to engage with other people or show interest in their feelings.
Emotional apathy: You feel very little emotion.
It strikes me that this describes your husband and whilst this may not help in itself it may perhaps set your thinking off down a different path and allow you to understand what may be happening to your husband that he is probably not even aware of.
I repeat this is only my view based only on what you have written and my interpretation of it, you will need to decide if it might fit or not and whether or not it changes your thinking or what you do about it.
I hope this has given you something to think about at least. Let us know how you are getting on.
Best wishes
Tot
Hi All,
Oh my gosh, thank you so much for your amazing responses. I am so humbled by you all and I am smiling/tearful reading all these, how lovely and understanding you all are. Thank you all and I would love to reply individually sometime. I think yes, there is definitely some apathy going on and I have thought about counselling too so may look into this.
I have attended a Parkinsonâs Support Group for coffee mornings 2-3 times which I have enjoyed and everyone is lovely but I find they donât actually talk about the Parkinsonâs (which is great, donât get me wrong) but I have so many questions I feel bad talking about it as they are chatting about general things. I donât want to bring anyone down if you know what I mean! Also I donât always have a lot in common (apart from PD) as they are all quite a lot older than me. Not that thatâs a problem but most of them have grandkids and I still have teens at home! I do talk to my friends but donât talk about myself too much as a lot of people seem to do! Also I like to chat about other things with them and my mum is very unwell so donât want to worry her! I think it is partly dependent on my mood. Some days are OK but some are just dreadful but I guess thatâs all part of it. I am so sorry for any of you that are suffering from PD and your families. I have been quite good about it so far but the last few months have been very different for me. I crave someone just looking at me and have a giggle over something silly! My children are very chatty (luckily) so I am very fortunate to have that. It is still not the same as your partner/companion and donât want to the kids to worry. They are in their prime teenage years partying and first loves! Those were the days!
I will come back tomorrow and I canât thank you all enough for taking your precious time to respond, I feel so lifted and better already, I am smiling inside for the first time in a while. Thank you and best wishes to you all x
Great to hear that your spirits have lifted a bit 
We all need a boost every now and again.
Weâre all in this togetherâŚyouâre not alone!
Simon
No you are not alone. It could have been me writing it. Its just how I feel at times. Be strong and think positive 'Thats what I tell myself â
Thank you again everyone, and hope you are all keeping well. Rach1, how do you cope on bad days? As my husband doesnât talk much itâs hard to express things to him and when I do he doesnât really react so that makes it worse sometimes! Does that make sense?
Hi CoffeeandBiscoff
Thank you for your reply. I am quite a bit older than you and we both retired a few years ago, we are together 24/7 he has a sleep for one and half hours each afternoon and gets ready at 7pm to go to bed at 8pm.
My husbands Parkinsons was diagnosed Feb 2023 and Prostate/Bone cancer about the same time. Just when we thought things couldnât get any worse I was diagnosed with colon cancer. The 1st major op and chemo April 2023 it returned and 2nd op Oct 2024. Iâm pleased to say my last months CT was clear next CT in 6 mths. With all that to contend with I had to be strong and positive and district nurses coming and going helped.
But the last few months now things have settled I think I had time to contemplate
âIs this life nowâ
My closest friendâs husband died last year and Im reminded by her, she is on her own and at least I still have a husband. I decided last week I could not let this sad/tired feeling take over. So I organised a man to cut all our tall bushes shorter in the garden. Organised a cleaner who started today. Our son is going to take hubby to football every other week. So hopefully taking small steps and with the husband talking, I think itâs because their world has got smaller and they canât think of much to say. I sometimes look a him and wonder what heâs thinking and is he feeling sad as well.
Do hope this all makes sense, typing in a hurry.
Please forgive me for butting-in, I wouldnât if I didnât think it important.
Iâve spent most of the past few years supporting, learning from, and being absolutely in awe of an invisible and quiet army of people who do amazing things and make huge sacrifices without any fuss or recognition becauseâŚthatâs âjust what you do when someone you love needs itâ
Well, another part of my job as an NHS Health Coach was picking up the pieces when that doesnât happen, It is by no means automatic, not everyone is willing or able to pick up the mantle. Nobody would choose the events and circumstances that have led to here and now, but in the face of similar challenges some people step up, and some peole step out.
What you do is amazing. YOU are amazing! And the Heallh & Care system is completely reliant upon you and the rest of that invisible silent army of informal carers. So you should be, and feel, well supported and appreciated.
If they havenât already, your GP sirgery may have someone like me whoâs job is to support you. Job titles varyâŚHealth & Wellbeing Coach, Living Well Coach, Care Co-ordinator, Frailty Co-ordinator, Health System NavigatorâŚthe list goes on! But your GP may be able to connect you to that kind of service.
Adult Social Care may be able to connect you with a local carers network of people facing similar challenges in caring for loved ones even though the health conditions may differâŚ
There may be other sources of support depending on circumstances so just message me if you want a chat about those, I honestly donât mind.
LastlyâŚThank you!
Simon
I have Parkinsonâs and just came to the forum to see if Apathy was one of the subjects. I am so relieved to see how common it is as I just couldnât decide if I was going down the depression route. My speech is now affected and I feel as if I am in panic mode, wanting to get my thoughts out before I can no longer share them. Maybe your husband is struggling to say what he feels. I have lots of friends but very few true friends who want to hear how Iâm really feeling. If I told my husband what Iâm really feeling at times, I think it would worry him . I think you need a real friend you can trust ( maybe a non-working one so they have time to listen) and arrange regular meetings or calls so you can offload your worries and have a laugh. Those type of friends are very rare. Maybe they could be someone from your regular Parkinsons support group as they will understand how youâre feeling? Hope you manage to find that special friend soon x
Some of us are luckier than others. Iâm 56 and was diagnosed with YOPD in 2021.
My wife is 52, works full time and is also my unpaid carer. Weâve been together 20 years.
Looking back, I suppose at first I didnât fully appreciate what she does for me. However, last Christmas I had what I would call a short bout of depression/mini breakdown, probably due to my symptoms, time of year etc. And it dawned on me who was sat with me when tears were streaming down my face.
She does so much for me, she has sacrificed so much.
Shortly after, I was sat having a coffee, listening to the radio (Ken Bruce) 
when I decided to send him an impromptu email to give her a âshout outâ and play a song for her. HE ONLY WENT AND READ IT OUT! . When my wife heard it, she was so humbled. I buy her flowers occasionally, we make a point of giving each other a hug everyday, she fully understands what Iâm going through.
I do worry a lot that sheâll get fed up and distance herself. But when I explained this to her last week, she replied âI made a vow to you, in sickness and in healthâ.
She does occasionally take a time out; sheâll go to a spa with her sister or have a girly night with her which helps us both to be fair.
As I say, I am very lucky to have her beside me. I think it is important to talk to each other about how you feel and even more important to listen.
Cheers
D
Thank you for your kind words and important information
Si McCall. which I took onboard. I spoke to my GP yesterday and have an appointment for my husband tomorrow for a full examination. He is losing weight and Im trying hard to fatten him up( so if anyone has any advice I would be most grateful) he is having Complan. Dr said âFortisip not given at this stageâ
He also has low blood pressure and drinking water and adding salt as consultant advised.
CoffeeandBiscoff.
How are you feeling? I thought about you yesterday, we had a ride and lunch out and could really relate the⌠not talking, blank look and I also finding it hard to enjoy it. I liked your idea ofâŚearly morning coffee.
Best wishes to you all.
Non verbal communication in Parkinsonâs. I have been following this thread carefully because it has raised so many issues that donât always, in my opinion, get the âair timeâ they deserve. Of particular note here is the number of times blank expression, reduced speech etc have been mentioned. Non verbal communication is an important part of communication overall. It is far more than the spoken word. I put ânon verbal communication in Parkinsonâsâ in the search box and AI brought the this up
Parkinsonâs disease can significantly impact non-verbal communication due to motor and cognitive symptoms. Facial expressions, body language, and vocal tone can be affected, leading to difficulties in expressing emotions and conveying messages, which can be misinterpreted by others
It goes on to give some simple clear information if you little about it. There is a lot of information available about this subject and I do think if this was better understood it may help family friends carers or whoever, cope better with this very distressing symptom and indeed Parkinsonâs and many other conditions in general. Please do look into this a bit if you can. It is an interesting subject in its own right but better understanding might make a big difference to those who are struggling to cope.
Tot
Interesting post, thank you.
I am very fond of cats. My adored cat died late last year and I have decided not to have another cat because of my PD disabilities. I now note that most cats do not want to approach me. This is a new problem. I have been bemused by most cats no longer willing to come near me. Sad rather than critical.
Sooty
A great point to highlight @Tot. Off topic a little, but I try to make a point of standing in front of the mirror every morning and make weird, scary, screwed up grimaces and try to smile to get the face muscles working. Eyebrow raises can be tricky. I scare myself sometimes . It was something a PD physio demonstrated on a YouTube video. I do think it helps but thereâs times I need to suppress a smile as it looks a little scary .
Anything to help the non verbal comms and not allow people to think youâre raging at them when you subconsciously scowl 
Cheers
D
PS. Self facial muscle massage helps too!
Interesting post Dusty68 - I might well try that myself.
Thanks for sharing as you say it all helps even if only one or two people
Tot