My sister in law is convinced that her brother, my husband, has lost emotional range and ability to empathise since his diagnosis of PD six years ago. She says he’s emotionally blunt and she cannot get through to him. I’m not sure he was ever that good at empathy but it probably is worse. I just wondered if anyone else has noticed this about themselves if they are a PD sufferer or people they love who have the disease. In either case, if you do think this is a PD thing, how do you deal with it? How does it feel as a PD sufferer?
Thank you
My husband has little empathy for others now but seems unaware though he used to be a very kind & sensitive man. Occasionally when I can tell he has really hurt someone’s feelings by failing to empathise with them I take him aside and tell him he has upset them. Unfortunately he rarely understands what the problem is and looks perplexed!
1 Like
Thank you. At least I’m not alone or imagining it. I tried explaining it to him and he was also perplexed and a little defensive. So far it’s been the hardest thing to lose. I have not yet learned how to live without that in my life.
1 Like
I agree, I find it hard too. My husband also gets defensive at times which then makes me feel guilty for raising the matter but it is just so difficult in this strange half-way zone between what’s accepted as normal behaviour and not.
2 Likes
Precisely. It’s very hard to navigate between accepting the disease and supporting someone you love who has it and at the same time acknowledging to oneself and them how it affects you. I’d love to hear from PD sufferers on this thread to get your perspective.
I am so relieved too have found this thread. I too have noticed an increasing lack of empathy in my partner and it has been picked up by other family members too. It is very hard not to be upset by some of the very unkind things that are said. We are still pointing out unkindness but I’m not sure it helps. Sometimes I just blame the PD and count to ten but I would love ideas about the best way of handling this.
1 Like
Well let’s keep talking on this thread and sharing any ideas. I’d be very interested if anyone with PD felt able to contribute and offer insights.
I have tried explaining it to him. That has not really worked. He gets quite cross and says by talking about it, it will make him even less able to act appropriately because he’ll be self conscious.
I’ve tried spelling out what I need very precisely ‘If I’m crying because I’ve been bereaved, hug me’ . ‘If you’re away for several weeks and you know I’m dealing with shit here, call me regularly’. That has been slightly more fruitful.
I’ve tried adjusting my mindset to celebrate the good things that he can still do and accept that this is one of the many he can’t any more. I’ve accepted that he can’t drive, sleep, relax, smile much, stand taller than me, etc etc but this one is harder because it goes to the core of what makes a relationship.
I am tired now but will be replying to you all on this i am the wife of husband who has parkinsons he is a totally different person and doesnt seem to care or have consideration for me any more but is different with strangers and others our relationship is no longer will say more when i am not tired
1 Like
I am a PD sufferer, but it is my husband who has lack of empathy and gets bad tempered.
Is this a 'man ’ thing? as you all say this about your husbands. Are there any men who have
the same problem with their wives.
Feels like a minefield. I have one returner offspring at home at the moment and to say there is room for improvement in communication would be an understatement.
Physically to start with there are difficulties. When he is going in and out the door I have to start turning in advance because trunk & neck I so stiff - then to try & get some speech out …then I’ll be lucky if I can get my eyes open to make eye contact. Don’t know if I am managing a smile on top of that. Feels like a bundle of unexpressed emotion behind the ‘mask’
I remember when he was trying to explain his thesis to me of course I want to express interest because you don’t want them to think you don’t care but so hard staNDING STILL SHAKING AWAY CAN’T CONCENTRATE AT ALL
Have found myself getting intensely irritated with friends. Don’t know how carers cope. You wish people could ,know how it feels & sometimes you would like support but sometimes you are boiling inside & it must be very offputting.
I remember my mum when she was still in her flat with dementia & I was visiting. I was trying to feel useful cleaning in her kitchen meanwhile she was in the living room with steam coming out of her ears at my infringements on her space/sense of independence
Another thread about it here:
Are all Parkinson’s Patients self-centered? 2007 in Caregivers Forum
…, I think most PD sufferers eventually start to withdraw into themselves. Their world continually narrows as they cannot do the things they once did
https://well.blogs.nytimes.com/2010/03/04/parkinsons-limits-ability-to-read-emotions/
Parkinson’s Limits Ability to Read Emotions BY TARA PARKER-POPE MARCH 4, 2010
The findings that Parkinson’s affects a person’s ability to read another’s emotional state may have a significant impact on long-term health because it could lead to social isolation, said Dr. Gray. “Over the long run, people who have trouble understanding others’ emotional states struggle to maintain healthy social relationships,’’ said Dr. Gray.
The information is also important for family members and caregivers who spend time with someone who has Parkinson’s. “It’s important to recognize that these communications difficulties might also be present,’’ she said. “Then, everyone can take steps to communicate more clearly and avoid a lot of frustration.’’
Emotion Detection Deficits and Decreased Empathy in Patients with Alzheimer’s Disease and Parkinson’s Disease Affect Caregiver Mood and Burden. Martinez M, Multani N, Anor CJ, et al. Front Aging Neurosci . 2018;10:120.
Individuals diagnosed with AD or PD also demonstrate emotion processing deficits, independent of their cognitive status. Emotional expressions play a significant role in communication and are one of the most important aspects of social cognition
Emotion processing deficit in PD is often seen across different stimulus modalities, and these individuals are particularly impaired in recognizing affective prosody
Emotion recognition impairment can lead to severe consequences, such as failure to modify behavior and socialize
This can lead to breakdown in communication, increased conflict in their relationship, and caregiver burden
1 Like
I have had PD for over 25 years, no meds so what I experience is not the meds. I hate this emotional apathy. I want so much to express what I would have, years ago but rarely can I pull it off 50% of the time. What once I enjoyed, people I wanted to be with, place I loved to go, are only memories. I can do them, be with the, and go there but it isn’t “me” who is there, now. I try to find something a loved one enjoys and if not take part, learn enough that I can “seem” to share a relationship. I have had to find new hobbies, and then later, newer ones because those too went into the abyss. Concentration, remembering what I had begun and where I put it until I returned, on and on. But many of you experience the same thing. Add to all that, age (74) and constant fibromyalgia (or is it PD pain = depends on which doctor I’m with!) So I too worry that who I am now and how that comes across, to my loved ones, as being uncaring, tho I do, very much care, somewhere inside me, I just can’t seem to push the right button to make it known and shown!
3 Likes
Hi I have just read your post and my husband seems a lot of how you explain things he is finding things very hard at the moment, with not sleeping his speech has a mind if it’s own as he can talk properly one minute but stutters and stirs the next or his speech goes very quiet, he hardly sleeps at the moment and can be up every10-20 minutes with needing help in and out of bed we are both awake all night. He sweats really bad and will have to change t shirts as many times as possible. He don’t smile anymore. And can get very irritable,and can be very sharp when moaning because I didn’t get him up right or anything else which is the wrong way. His walking is shuffles but now can’t walk far. But this seams to be as this pd seams to affect most people.
1 Like
Just a thought but this could all be tied up with being anxious, or having thinking issues - which are part of the symptoms of Parkinson’s. Losing independence and the ability to do things and think clearly all lead to seeming to be very self-centered…
This thread resonates with me and how my mother changed are her condition progressed
Hi I’m not sure if this is still current but my husband’s personality has changed significantly. Its breaking my heart and our marriage so much now I really do not know how to cope anymore
Hi Jan,
Please do take advantage of our kind and knowledgeable helpline staff at 0808 800 0303. You will be surprised at the length they will go to help. Be assured, we want to provide assistance to family and carers as well as PWP.
Best wishes,
Jason
Moderation Team
1 Like
Hi Kath
Yes I am wrangling with the slow loss of the relationship with my mother, and your comments resonated with me. She used to be my rock who’d I call everyday and chew the fat with and talk about life’s ups and downs. She’s 73 and was diagnosed with PD 3 years ago and I’ve been dealing with the gradual loss since then. It’s really hard at times. I’m grateful though that she is still here with us and try to make the most of what we still have. It’s not easy though. Feeling for you.
2 Likes
sorry for a late reply,not been on the forum for a long time , know how you feel so hard when the person you knew is completely different and cant think only day to day now and things going worse.
cant talk at the moment hes checking what im doing . take care speak soon
1 Like
I’m sorry for your experience… but this is so helpful to me to have it explained. Thank you
I’m sorry. I utterly feel for you. I had a long period like that but I don’t know what it is - time, getting used to it, change in meds or what but things have improved for me - my husband seems to have come back a bit- so maybe it’s not always a downhill route.
I could have written this Nettie. My husband has yopd. Diagnosed 5 years ago but symptomatic for 3 years prior to diagnosis.