None motor symptoms


#1
My Husband was diagnosed last December so we are new to this he has a very unusual presentation with none motor symptoms being in the main.He was put on exelon patches first 4.6 and then 9.5 which helped a lot then he started co/careladopa which he now takes 4 per day.My problem is it first started with him believing that there were 2 of me tupps 1 and 2 which he found comforting then that our home was not right and that other people were there we always talk it through but which ever way I try to tell him that it is not the case seems to back fire .The very worst part is that when this happens which is far less than before but he gets really upset and it breaks my heart.So please if any one has a suggestion I would be very gratfull.With thanks Tupps.

#2
so sorry to hear your husband is having difficulties. Is there a Parkinson's nurse you can contact or your neurologist?

It sounds like it might be the meds causing these symptoms. Something similar happened to me until I reduced my dose of the Dopamine Agonist then it stopped overnight.

Do ask a professional for advice

good luck

Caroline

#3
Hi Tupps,
I don't have any suggestions how to handle this problem. My husband also has this symptom. He thinks there is two of me and people in our house (who don't exist) His neurologist and Parkinsons nurse are aware of this but don't seem to have any answers. He has been off of dopamine agonists for about two years now but it hasn't made any difference . He has an appointment with a psychiatrist soon so we will see if we get any answers there.

#4
Hello Tupps

I'm so sorry you are having to deal with this and, like the others, I'm afraid I can't offer any answers. I can only say that you are not alone and the symptoms you describe are not unusual.

My husband also suffers from delusions and thinks there are three of me! But the others are my sisters. (I don't have any sisters.) From time to time we are variously on a boat which may or may not be sinking, or he is on a picket line, or we have multiple people including babies who need feeding. He seems to think I am part of a large staff of people who look after him. I wish ......!! It is not easy and sometimes my brain hurts with trying to give the right answers to the questions he comes up with. He is also very negative about everything. People are out to rob him or there is a conspiracy to defraud him or the house is falling down or the car has something wrong with it. Somehow I have learnt to detach myself from it and not to get upset by it. I try to give him loads of reassurance and also try not to have confrontations about what he thinks he can see. H is also on Exelon patches 9.5 and Sinemet Plus - 5 a day. He has never had any other Parkinsons drug.

One thing you may want to consider - infections (ear, throat or very commonly urinary tract) can cause these symptoms to be much worse. My husband was very agitated last night, roaming round the house switching lights on and off and trying to summon help for a boat that was about to founder. I collected a urine sample and had it tested at the surgery today and sure enough he has a UTI. He is now on antibiotics and hopefully this will ease the situation. This is not the first time this has happened.

I wish you and your husband all the best, and remember - you can always let off steam on this forum.

#5
Hello there Tupps. Just to try and help you feel in good company it is now 2.15am and I come onto this site because I have had about half an hours sleep. My h suffers from motor and non motor symptoms, did try dopamine agonists once and had to comme off them sharpish because of the non motor symptoms. Agree about if he has a cold or something it all goes worse. Tonight I went out knowing that h was a bit under the weather but took his temp and it was normal. Half way thro evening called the carer to see how she was getting on and she was having a bad time. He was needing help to stand up and sit down, stand up and sit down, stand up and sit down , this had gone on for couple hours and now he was exhaused. He wanted to eat his supper in bed and she wouldnt let him in case he choked, so he spoke to her very rudely. When she tole me this I asked her to take his temperature again and returned home. Got home she hadnt managed the thermometer so took the temp it was 102, have some antibiotics in the medicine ccupboard prescribed by doc just before xmas when he had cold and I thought this might happen but it didnt so h didnt hav e them. Decided to start giving these and call doc in am dont want locum. We went to bed and he was out of bed and then back in every quarter hour until 12 ish , then half hours sleep then awake and very hungry. I went downstairs to make toast but he had one bite and that was enough. After that he is tossing and turning, thinks he has to go to the bank but cant sort his clothes out and has to hang them on the end of the bed so they dont get buried in the sand. I have now come to computer because I am loosing my temper and cant bear myself for feeling angry about this after all he cannot help the fact that his brain cells are all mixed up. But I just wish he would believe me when I say things like the bank is closed at 2 am. I know that in the morning I will be so tired I wont be able to cope and only last week I was ill for 3 days with migraine. For the last 4 years I have had continuous tinnetus they say its you're own brain nerves you can hear them because you,ve become so sensitive, so I have a permanent ringing in my ears the whold time so half the time cannot hear what h is saying as he speaks in a soft whispery voice. So this is it he is hallucinating and delusional and I will most probably be only fit to be taken away by the men and women in the green coats very soon. There I do feel much better now having said all this to you all. In a few days he will be ok again. I dont think anyone can do anything about these non motor symptons. I don t think the neuros really know what they are doing. I thing it would be worse without the drugs I read James Parkinsons essay on the Shaking Palsy and maybe that is worse.
Thanks for listening to this outburst, hope it hasnt overwhelmed you. But you are in good company because most of the time me and my h have a nice time living together with the parkinsons as well and we can laugh at the hallucinations and look after each other lots love sunray

#6
Hello everyone,

I find it so sad reading your stories as they are the same as my husband went through, not all but most and I know how exhausting it is to have very little sleep and try to cope the next day. As some of you will know my husband has had pd for almost thirty years and we have been through many different problems and types of medication.Five years ago he had to go into a mental health unit because of the long time he has been on all the meds which caused paranoia and psychosis anyway the upshot was he is still on hourly dopermine from 6am to 11pm but added to that is 4 quitapine a day and aricept once a day this has helped a lot and although he is now in a nursing home he attends college two days a week when able and does other activities the rest of the week, he is very tired the day after college but he gets a lot out of being there and away from the home.
To get to your problems I think you need to ask the consultant what treatment is possible for your husbands as there are medications that can help and you need them before you really cannot cope. I am a very strong person but it nearly killed me off in the end so we had no choice but a nursing home. If my husband gets to the stage where he is confined to bed I will try to get him home again but at the moment his challenging behaviour is too much for me to manage.
We all want a cure but we also need much more support for coping all the years people are living with the very difficult condition and the affects on family members so please I know how hard it is but keep on at people and let the PDUK know that management and support are just as important as a cure.
All the very best keep your chins up and don't feel bad if you have a good old moan now and again you deserve one no matter how much we love our spouses
best wishes
vivian

#7
Hi Vivianne, Thats helpful, you know the medications for non motor symptoms? do they affect movement adversley? My h's behaviour is exhausting because of continuous need to move and not being able to do it alone and also because he is blind. He is very meticulous and was an engineer so gives out instructions all the time how to help him move around which in a way is a helpful thing but in another way its very demanding and detailed, so any what I would call challenging behaviour is more to do with not understanding that he doesnt always know best, so its a quiet stubborness. I am not sure that a med would help with that? any thoughts yourself? as one with experience? love sunray ps at the mo he is just on levadopa alone and I have read all the stories of ocd behaviour and ppl saying the drugs are causing them and am bit shy of getting into a drugs cocktail regime any thoughts?

#8
This is to all of you wonderful people who replied to my post I had no idea that you would reply so quickly and reading each post I realised that it was not unusual and not that but the same stories of thinking that there are more than One you, and other people are in your home .I feel very humble that you all had been coping with these problems for years and yet you still found time to reassure me.I now think that I will be less worried and take it more in my stride, a good sense of humour help,s when I looked at the web site this morning and read your reply,s I laughed and cried, how good it is that we have a platform to seek help and help others and that alone is amazing.I would like to tell you something that I think you might find as strange as we did.We moved to this area just over 5 years ago my lovely husband took early retirement and we moved to a bungalow as I could no longer cope with the big house and stairs as I have had M.E for 20 years and O.A when we meet our new neighbours and now very good friend,s she had Parkinson,s and was the founder member of the PD group in our area well we got involved with the PD group and made several friends there as well.she could also understand my condition so that helped us both .So when my husband started to get ill and know one seemed to know why and after being told he had depression I knew somthing else was going on after many visits I came across a wonderful charity called health in mind they were amazing and after a chat on the phone with me we then had a face to face meeting and after 20 mins I was told this is not a mental health problem we needed to see a nuero this was in early December we got an oppointment for feb 2012 I came home went onto the PD website and within 10 min,s I knew that it was parky when I read the mental health section it told me just what we were going through .Then he went down hill very fast so we paid for a private consultation just after we walked though the door he said you are correct your husband has PD because i downloaded the none motor symptoms ? and he said that his none motor symptoms were much worse than motor .But also that he could help and that is when he went on to the exelon patches4.6 then9.5 we then saw the neuro at the hospital in feb and on we go on this Strange journey called Parkinson,s.So we then become fully paid up members of the Parkinson,s UK I said to our friend I know you are always looking for new member,s but that is taking it to far,joke.I now realise that thing,s have been going on for some time I am sure you all know that when you look back it all makes sense.I believe that thing,s really got worse because my Husband was really stressed because 2 years ago I started to get the most terrible pain in my arm and as usual lots of time till we found out that my cervical spine was in big trouble and it had crushed the nerves to my arm had surgery Jan 2011 and it has failed so not the best of years.So hello to all you fantastic people and thank you from the bottom of my heart.With much love to you all.Tupps xxx

#9
Hi Everyone,
Regarding the quitapine and aricept tablets my husband is on from when he was in the mental health unit, these help with the paranoia and psychosis and they find that aricept helps clear the mind for people with these problems with pd, but they are only through the psychiatrist but they have made a huge difference to my husbands mental condition.
I am so pleased that you had some very good replies and that you now don't feel so alone and that it what this forum is all about sharing the good and the not so good. I hope you all enjoy this lovely sunshine.
best wishes
vivian

#10
Hello Everyone again, Thanks Vivienne about the tabs. Tupps! actually thats a lovely story . My lovely h is lots better today as his antibiotics have kicked in and he is only doing normal halucinations like little dogs and cats . So we were both exhausted today and lay in the sunshine on the bed and we said when you,re feeling too ill to move one benefit is you can enjoy the sunshine and not feel guilty.

Also Tupps forgot to say that yes my h did go thro a long stage when he was very stressed with himself that there were 2 of me and a couple of times , once when stressed and once when he was on the correct tabs but a different make, he just didnt know who I was at all and rang his lifeline number and told them there was a stranger in the house and then later he kept saying he wanted to go home. I was so alarmed by this that I didnt even get upset if you can understand that. But it just never happend again BUT I make sure that if dreams and hallucinations start getting alarming for him or he starts thinking the house looks different then I stay near him and talk about bog standard normal things like the electricity bill or something, this really helps.

Life is just a dream somebody said.
Maybe thats true
lots love Sunray xxx

#11
Hello to you all just read Viv,s post hope this might help when we saw the nuero he suggested Quitapine so you should be able to get it through your doctors.Let,s hope it does the trick.And once again thank,s for your post,s and it is great that we can all try to help each other. Tupp,s.xxxx

#12
To Sunray I am just going to bed hope you have a good night and the same to you all Tupps

#13
My wife suffered terribly with hallucinations after she was put onto medication. She saw horrible faces zooming at her, dogs sitting on the settee, a dancing man in the corner of the room, coloured lights, the corner of the room peeling back and more.

It got so bad for her (she was only getting around 1.5 hours sleep a night and was frightened to go to bed so she slept on the settee to avoid disturbing me)that I had to sleep in the chair next to her.

Then I had to get up at 6am for work.

Prescribed drugs and a change of the Parkinson's meds stopped the problem.

#14
Gosh Jim what did she change from and to? Sunray

#15
Hello Tupps
I wonder if our experience will help you. My husband was convinced that lots of other people lived in our house and when he laid the table he would always ask how many places to lay. He often asked me where their bedrooms were. On one occasion he asked if I had booked him in for breakfast.
I tried to talk it through, when did he see these extra people and what were they doing. It seems that when he got up to the loo in the night he saw me lying in bed but didn`t recognise it was me and so thought we had a stranger in the house. I`ve used safety pins to pin to the headboard on my side a large label with my name on it and it seems to have done the trick.
Perhaps there is a similar misinterpretation of a real thing that is at the bottom of your husband`s problem.
Good luck
Hatknitter

#16
Dear Hatknitter only just read your post thank you very much for your advice I find it very interesting that almost every one seem's to have the same delusion that being that there are more people in the home ext'and yes my Husband also has time's when he will put out more glasses and cups than necessary.Do ant of you find that your partner has mild problems with understanding task's that normally would be no problem at all,and struggle to understand thing,s I find that I am taking over more and more and I find it quite scary.I now thing's are getting harder and I know that my own ill health is making thing's worse, but I would like to say that most of the time we have is great' we really love each other and we laugh all the time .There is one thing I would like to tell you as I have said we have always had a good relationship so we think ourselves lucky.A very unusual thing has happened as I have said before Hubby has invented two of me any one would know one is more than enough. When I say to him which one are you talking to he laugh's and say's your the only one for me, which is good.Well here comes the good part in September we celebrate 43 years of marriage and on that day we are gong to have a wedding blessing and a small party afterwards all because of Parkinson's 'As my Husband seems to have fallen in love with me all over again .Well I hope it is me ha ha.So something to really look forward to once again thank you all for the advice and support.Whith much love Tupp's.

#17
I forgot to tell you that we have asked all our guest's that we do not want any gift's ,and ask them to make a donation to Parkinson's so two good things from our Parkinson's journey .With love Tupp's.:flushed:

#18
Hello Tupps,
I hope you had a lovely party and really enjoyed the day.
We had our 40th W/A and had over 100 people there with a disco and my husband danced with one of our friends to grease lightning and stole the show which was really great, we too asked for our friends to give money to PD and dogs for the disabled as I had one called lady who has now retired to live with our son and I have a new one called April, sadly my husband is now in a home so that was our last really good party and we look forward to our 50th in four years time when we will just be glad we have made it.
Enjoy the good days and if the bad ones get worse see if there is any other meds which will help your husband.
with lots of love
vivian

#19

I can't remember now Sunray, she was on so many different tablets. All I recall is Co-Careldopa but she was also taking tablets for depression and insomnia as well as anti-psychotics.. Unfortunately for her the anti-depressants didn't work and that was the problem. Even with Parkinson's, her life could have been so much better and happier without the depression stopping her from doing anything.