Hi all, hope you are doing well. My hubby was diagnosed 18 months ago, and he is now 39. He started on Madopar in Dec and is also on Azilect. He has very few physical signs, just a right hand tremor, but the cognitive ones are really affecting him - fatigue (like, not able to get out of bed fatigue), inability to make decisions, can't do more than one thing at a time, easily distracted and extremely low mood.
We have been together for 15 years and married for 7. We have a 4 yo and a newborn. I am becoming very unhappy with our life together because of his apathy, depression and mood swings. The person that I knew seems to come and go, he has lost all spontaneity and is often short and withdrawn. When I talk to him now, he does not respond to me, and his facial expressions do not change. So I do not know what he is thinking or even if he has heard me.
I am becoming very afraid that I can't be in this for the long haul, although I feel determined to, it is a thankless ask if he loses his enjoyment in life and can't manage the simple pleasures. I know he is dealing with all the changes and his diagnosis, but I am just terrified that this is the beginning of the end.
Hi lizzieb, I think you both need help. Your husband's medication may need adjusting and you need support. Our helpline can help if you don't know which way to turn, hopefully there is a PD group near you. Best wishes flo
I am sorry that you have so many difficulties at the moment. It must be very hard to co-ordinate the needs of your children and the needs of your husband. Lots of PWP suffer with fatigue and they seem to have a variety of ways for dealing with it. My OH goes back to bed for 2 hours after breakfast and naps in the chair after lunch.
He also has an inability to make decisions, can`t concentrate on more than one thing at a time and is easily distracted. 2 years ago we were referred to a specialist in dementia and the medication has been very helpful. I got my husband back. It might work for your husband too.
Lack of facial expression is a symptom of Parkinson`s. Your husband`s low mood could be because of his problems, enough to make both of you in a low mood.
My best wishes, you are coping remarkably well, try to get enough sleep.
your description of your husbands behaviour certainly struck a chord with me. My husband does not suffer from PD but he has suffered from depression which for a long time wasn't properly diagnosed. He has bi-polar type 2 disorder and with a proper diagnosis and treatment has remained mainly well for many years. However when our third baby was born he sunk into a deep depression with symptoms such as you describe with the addition of a great deal of anxiety. My husbands changed personality was a result of his illness and yes it was very hard to manage day to day, he got so ill that he was admitted to a psychiatric ward for over two months which gave me a break. Your husbands depression may be directly related to his diagnosis which he may be finding difficult to accept but whatever the cause there are good doctors and treatments out there for depression. You will feel you are losing the person you married and you will feel angry with them as you try and shoulder all the home responsibilities day to day. Try speaking to your GP and explain how hard it is for both you and your husband. I found that i had to be my husbands advocate making sure he got the right treatment as he was unable in his depressed state to seek help properly. Things will get better but try and get some help for yourself. I managed to have a friends daughter from Germany come and stay as she wanted to learn English and was happy to help with the children and housework. She enjoyed it so much she came back the following year. You may need to ask people for help with the children or just doing the shopping. I had no family near so I relied on friends who were happy to help taking the older ones to school whilst i visited my husband. When my husband was a bit better we tried to spend time outdoors getting exercise it seemed a better distraction than being in the house. Try to remember you are not alone many people will be glad to offer some assistance as i learned, i just had to ask.
Things are inevitably going to be difficult, your fears for your future are perfectly understandable, plus the fact that you have young children who can be very demanding at the best of times, you should see your GP, and above all chat to your PD Nurse or Consultant take as much help as you can , this will assist you and keep you from slipping into depression. Your husband may respond better to a change in the drugs he is taking , try everthing you can to hold things together until your husband stabilises, I remember when I first started my medication I was in a semi trance like state,my personality changed over night, I did in fact behave very like your husband is now but worse, however with alarm bells ringing and a visit from my PD Nurse Consultant , and a change in drug regime overnight I was almost my old self , lets say 95% me which is magic for someone with PD,so hold on tight its sure to be a steep learning curve you are not a trained PD Specialist, but you can do it, your husbands changes in mood will level out and through time you will feel like a team fighting a tough opponent, my wife and I have had some problems but have overcome them all and now feel stronger as a result, I wish you well on the road ahead keep your family safe.
My very Kindest Regards Fed
this is my first time on the forum. I'm in the same position as you. My husband was diagnosed 18 months ago at the age of 47, I was 44. We've now been together 32 years, married almost 29 years. I was only 14 when we started going out together. He's the love of my life, always has been, I love him with every breath of my being. We went through hell for the the first 6 months after diagnosis, as he suffered dreadfully with denial & depression but he refused to ask his doctor for help. He pushed me so far that I seriously considered leaving him, which I'm not proud of. Somehow we got through it but we are now again going through a terrible time. He walked out 2 weeks ago with just the clothes he was standing in. He returned after 3 nights looking like a tramp. I never thought that my loving caring husband could be making me feel like he is now. He doesn't talk to me, he doesn't make eye contact with me. He sits ignoring the fact that I am upset or even crying at times. I crave for him to touch me or show affection but that doesn't happen. He refuses to accept there is a problem & WILL NOT discuss what's happening with us, repeatedly saying that he is fine, "there's nothing wrong with me". When he does look at me it's like a shark looking my way. He's 'dead' behind the eyes. He barely texts me when we are not together, when he used to text all the time. I have sent him a lot of loving texts or love quotes during the last week but he hasn't even acknowledged he's received them. I don't know what to do. I'm going to crack up. He's only like this with me. He still works & does voluntary work for the Red Cross. Yes in a caring capacity. I don't want to be without him but he's destroying me.
I am so sorry you are suffering like this.
Could I ask if your husband is taking DAs such as Ropinirole or Requip?
These drugs can cause massive personality changes and behaviour such as gambling and hypersexuality usually hidden away in a secret life of lies and deceit.
If this is the cause he needs to talk to his neurologist or Parkinsons nurse urgently.
I think it would help to talk to someone anyway.
Life must be hell for you.
Welcome to the forum. I am really sorry that you are having such a dreadful time. I am fortunate in that my OH has not been affected like yours. I`m sure that others on the forum will have experience that they can share with you. Perhaps you could talk to some-one on the Parkinson`s help line which is 0808 800 0303.
I know they are easy to talk to and very helpful.
Very best wishes
this is my first time on the forum too and reading about the effects PD has on both carers and sufferers is really helping me to see we are not alone, my husband was diagnosed 3 1/2 years ago and we have certainly faced many difficult situations. I can totally relate to your feelings as this often happens in our relationship. I am convinced that the medication does not help with the moods. We saw the Parkinson`s nurse last week for the first time and also have had a visit from a lovely lady from the Parkinson`s support team. We both feel so much better after talking about our fears and problems( and there are many) and have been given lots of advice on how to get help with all aspects of things. Please seek help, it is impossible for both of you to cope alone. Take care.
Thank you so much for your replies, I really appreciate it. He is only on 1mg Azilect at the moment as neuro team have said he doesn't need to be on anything else yet. Had a very uncomfortable night with him again, I'm now lying in bed crying as he sits downstairs. I suggested earlier that when he sees neuro research team on 22nd May that he has to tell them about his moods & changes in behaviour but he's refusing. Because like he keeps telling me he's fine & he's "****** sick of telling me that". He certainly wouldn't talk to anyone with me there. He's totally cutting me off. I honestly don't know how I can continue with it all. I keep crying at work, I had a major breakdown yesterday & had to be taken into staffroom. I can't imagine this having a happy ending.
Why is this happening to us?
It's been a dreadful day. OH has told me he doesn't know if it's worth us being together anymore & thinks he'll be leaving at some point. Apparently it's not his PD making him like he is, it's me. I twist & complain all the time & he wants to do what he wants. He wants to keep himself busy with work and Red Cross. Obviously I don't fit in to any of those categories. I had for the first time in my life a full blown panic attack this afternoon, I thought I was going to die. What a way to actually get your husband to put his arm around you.
I also think OH is interested in someone else. She's one of his Red Cross colleagues. He's been texting her & denying it & told me she was married but I found out she wasn't. She lives alone.
I think you are right that you think the neuro team should know about your OH`s mood change. You are his carer and the doctors, nurses etc always welcome the carer`s view of the patient. If you can contact them I would do so or failing that ask your GP to contact them. Make sure that they understand that your OH does not want any involvement from you and has refused to discuss these changes. In my experience they are experienced in raising this topic without alerting the patient that their family has mentioned it.
If I were you I would also see the GP on my own behalf and get some support for yourself. This is such a difficult time for you and you shouldn`t be shouldering the burden without help. Above all, take care of yourself Mint because you can`t help yourself or your OH if you become ill.
Let us know how you get on.
I've never seen it mentioned but I would have thought that being diagnosed in the prime of life with a disease associated with the elderly would be likely to precipitate a mid-life crisis - a feeling that life has passed one by.
A carer is entitled to a Carers Assessment by social care, whether or not the cared for person recognises their situation or accepts any help or treatment. This results in a mutually agreed support plan for the carer to help them manage their own situation and not end up ill themselves and at the very least allows you to discuss the situation with someone outside of the situation. This works well in my county but I can't swear how it operates elsewhere except that this entitlement of the carer to support has been strengthened in the recent health and social care bill. Don't overlook the helpline above. About one in twenty develop compulsive/addictive behaviours on d.a.'s so they will be well aware of the possible problems.
I am so sorry to hear what you are going through.... But it mirrors my situation to a tee..... My husband was diagnosed 3 years ago at 52 a fit and healthy football playing offshore worker... His mood swings are awful but he says himself it doesnt take much to lift his mood but it also doesnt take much to make it drop... I am always the bad one and he keeps telling me to stop shouting but what he thinks is shouting and what i think is shouting is totally different... I do feel sometimes he is like a 5 year old.... I know he needs alot of reassurance constantly, but he says himself he doesnt believe it when he hears it... He also has crohnns and had a rodent ulcer cut from his temple not so long ago, so he is always looking for something else to be wrong but it is an obsession. He is under a very good dermatologist who is great with him knowing he has pd, but my husband does not believe there isnt anything wrong... He is now on 6mg of ropinerole which i know causes this but he has OCD with they way he thinks and it is hard to deal with at times. He is still working offshore and has passed his medicals and offshore survival better than "normal" guys... However, his job can be quite stressful (well sometimes I think he makes it stressful) instead of just doing the job and getting on with the next (as he is a preparator)(preparing the jobs) he needs to delve into the nitty gritty then gets anxious which then causes his right arm to shake. It is such a vicious circle... every time I think things are on the up, bang we land at the bottom again... He has had counselling but didn't really help we are trying to find someone who counsels and does CBT as I think this would help, I am actually doing a course in this to see it I can change his way of thinking. Like you I have cried myself to sleep many times and thought of leaving him but obviously I love him and wouldnt. I did have an opportunity to go to Melbourne not so long ago as my daughter works for H&M and was over there helping train new staff for the new store, so I went out for ten days (as I also grew up there) and it did me the world of good as I was on my own all day had no worries, no dogs to walk, none to look after but myself and when I came back I felt on top of the world. But after a few weeks home we are back to square one. Here in scotland we have a place called the Haven there is a few around glasgow and they are wonderful. They are a charity organisation and are for people and carers with all sorts of problems and sometimes I feel a fraud as I am not the diagnosed person. But they offer counselling, reflexology, relaxation and all sorts of other things or if you just want to drop in for a chat. I am there usually once a month and there is a nurse I talk to every few months just to keep in touch and they can see how you are coping..... without them I think I would be at rock bottom, as I don't want to burden my 24 and 27 year olds all the time... They are both quite strong and tell my husband to get on with life as it will have passed by and will be too late... I have rambled on a bit here, but hang in there, see if you can get some respite, the nurse at the haven said I may need to go away for the odd weekend either with a friend or on my own just to chill. You may need to this too it will also keep you sane.... Good luck and I hope things get better but counselling and any other help you can get, take it, you need to be in good health to look after your husband.. Linda
Hi all, my husband was diagnosed early part of this year with PD, but the personality changes started way before any tremor or diagnosis... i can go back to the exact day that he changed, and he has remained much the same way ever since, with no thought, consideration, respect for me, and is blind to my upset, he really doesnt see things the way that they really are, i will detail one such example........ two nights ago i was sleeping peacefully in my bed, and was awoken by his fist in my face, as he was shouting whilst asleep about wanting to kill someone - i awoke so startled and jittery, i shouted what the hell are you doing? and burst into tears, he muttered something or another, turned over and went back to sleep. yesterday was our wedding anniversary, he text me from work, i said happy anniversary and thank you for the black eye.... he said i do not remember anything about last night, although vaguely i recall saying sorry......i then said i was going to calll his neurologist or parkinson nurse.... and he said cant you just ACCEPT , you are over reacting.
i am gob smacked by his reaction, and very very upset, this is the total opposite personality of the man i married.... i hasten to add... that since his behaviour changes started i suffer anxiety and panic..... his parkinson nurse said he has a sleep disorder and told me to call the doctor for medication.... my husband was furious and accused me of wanting him doped up.... he refuses to sleep in spare room or take any meds other than his madopar twice a day..... i feel stuck and helpless as i struggle to help him
I can understand that you are feeling stuck and helpless and I wonder whether your husband`s question, can`t you just accept` is an indication that he feels the same way. My OH isn`t on Madopar so I Googled it and it is possible that the drug itself is causing problems. He could be having very graphic dreams and acting them out and you were just in the way of that punch.
If all this is part of PD or the drugs he can`t be blamed and won`t be able to control it on his own. Could you have a discussion with him about it so that he asks his doctor/consultant for a different prescription.
Good luck and best wishes to you both
Anjo- I just discovered this forum today while researching personality changes with Parkinson's. While we are struggling with different problems with my husband's changes since Parkinson's, we have been able to resolve the sleep issues.
Shortly after he was diagnosed our bed became a battle zone as I was getting kicked and punched by him as he was sleeping. He claimed to not remember the next day which was hard for me to accept. We talked to his neurologist about this, though, and it is very common in PD. It is called active dreaming. When most of us dream a part of our brain shuts down our body movements so if we're having a dream we're running our legs don't move. In PD that mechanism stops working so PD patients actively dream. And, for some reason, are prone to nightmares so the active dreaming can become quite violent. And they usually don't remember it at all the next day. My husband never did and didn't realize how bad it was until I showed him the bruise in the middle of my back one day.
His doctor prescribed Clonazepam which has worked wonders. It helps him to get into a deeper sleep and the movements have stopped. I know it doesn't help with everything but you may at least be able to get a more peaceful nights sleep.
Hello mint I recognise in your post some of the unforgivable cruel games I used to play with my dear wife I WAS POSITIVE she was having a sexual relationship with a work colleague, I WAS WRONG,also I continually picked on her for no reason, it says so much about her love for me that she didnt blow me out I would have deserved it and she had so many male friends whose shoulder cold be cried upon yet she stayed loyal ,I became aware of my complete personality change when my brother came up from Oxford for the New Year and he said to me "who are you, you look the same but you are not my Brother" he also asked my wife to return with him for a break " from this miserable git" he insisted I ring my Consultant and get me back on track, which I did and they did, get me back on track that is, I was taking a drug called cabergoline, this was stopped and within two days I was much better and two weeks later I took my loving loyal lady to the Lake District for ten days, It could have been so horribly different, that drug is now withdrawn,do you see any similarities Mint, please get in touch with your PD team and explain your fears or it may be too late.
Kindest Regards FEDEX
Hi guys , its late here as i sit crying writing this -
my husband as i wrote above has pd -- according to dat scan done last year they suggest he has had it about 5 yrs which would possibly tie in with these possible personality changes...
ie - no empathy or understanding of hurt, upset, consideration, respect or appreciation for me ---
i try my best to understand - i do everything i can to help .... I wont go into ALL i have done except to say all he does is work -- thats his only focus and goal in life ... Nothing else matters.
i try so hard to get him to talk about how he feels and thinks - im met with irritability and silent treatment , my upset gets a shake of the head and ignore...
there is no conversation about the issues here, he refuses to discuss pd or his behaviour --- and yes nothing changes for either of us if you have an avoidant partner unwilling to play his part.
i set up counselling , that didnt work
i spoke to the counsellor before she saw him and told her a little of his behaviour --- she recognised it as emotional abuse ...
i guess what im asking is - is this normal pd behaviour ??? Or is this suggestive of something more going on ??
im really upset most of the time because of the way i am treated and i know pd is difficult thats why im still here , i have arranged an appointment for monday to see his pd nurse , dependant on what comes of that my next appointment will be the neurologist as i need to understand and find answers ..
can anyone here please help or relate to any of this ???
I'm really sorry to read that you've been having such a difficult time for so long. Hopefully other forum members will share their experience and shed some light on whether Parkinson's Disease might be playing up with your husband's personality.
In the meantime, please remember that you can always call our Helpline on 0808 800 0303, which is open 9am-7pm Monday-Friday, and 10am-2pm on Saturdays, to discuss this in more detail. Our Helpline advisers might need information like what medication your husband is on, etc. in order to help you and your husband. Of course, you can also call the Helpline simply to have a chat and get some emotional support from someone who understands Parkinson's.
Good luck on your visit with the Parkinson's Nurse (and neurologist, if you get an appointment with them as well). I hope things improve in the near future.