I am a 70yr oldl wife to my pd sufferer husband. he is clingy, and suspicious, has periods of anger and terror the latest was when we had been out for a little shopping expedition, followed by a drink (soft one) going back to the car he suddenly stopped and refused to go further saying that there was great danger after a prolonged period where I stood in the street with my arms round him trying to calm him i had to send for an ambulance. the crew were great and carried out loads of tests in the ambulance all looked normal. but for over an hour he could not be calmed. eventually we arrived home after much cajoling from the crew. but he is suffering now from bouts of anger and his body and arms tremor frantically, he drools even more than usual, he sits head down eyes shut then will begin a tirade of irrational ideas re my honesty, truthfulness, faithfulness, etc. he is 75 and been diagnosed for around 6 years, we have been married for around the same time. he has children but they do nothing to either help me or him. His brother came unexpectedly saying during visit how worried everyone was. now hubby thinks he,s dying and I,ve lied again chris
Hi christine i,m sorry to hear yor husband is having such a bad time if you have apd nurse i urge you to get in touch maybe he needs a change in meds or something to help calm him down if you don,t have pd nurse ring the help number they will put you in touch with one all the best
Petec
Hi Christine
Im Keith , Im 52 yrs old and married with 2 grown sons
Im sorry to hear about the effects your husband is having but we all act diffrently to this condition
so im not going to say what you should or shouldnt do
I urgently suggest you get his medication checked and his blood pressure and folic acid
Sometimes it might be just as easy as that as it was with me
In some regards i know and have been through a little of what your husband is going through
I used to get very easily irritated and that would soon turn to anger and questioned the good others ( my family ) were doing for me ,
Even dis trust raised its ugly head and for a while i put my family through hell and back
They would walk around on eggshells not wanting to piss me off or say anything that i may take the wrong way
This lasted a few weeks
my doctor checked me over and my folic acid level had dropped so low it was almost non exsisting
also my blood pressure was either going through the roof or so low it was getting dangerous
My doctor put me on Blood pressure tablets and a course of Folic acid tablets and within a fortnight i was feeling better
I still have the odd day when i feel down but thats because i can not return to work and that makes me bored during the day
its been nearly 3 months now and although i still have parkinsons im not the horrible man dad and husband i was back then
Also this site and chatting with others like me , listening and taking advice not only helps but i can laugh again
Please get his doctor to do a few tests
UNCONTROLLED blood pressure can have varying effects
I wish YOU and your HUSBAND all my wishes
Keith
I agree that it sounds like his medication needs to be looked at. He may or maynot have a urinary infection which as you get older can go straight to the brain and bring on paranoia and confusion. I only say this as my father had an untreated infection for a while and he acted like this.
Definitely contact nurse and gp and run that by them. Its alot for you to handle.
Hi @christine1948,
You’ve received some good advice from a few a members on this thread which I would advise you to take on board, particularly Peter’s point about contacting your husband’s Parkinson’s nurse. If you’ve observed a change in your husband’s behaviour, this may be a side affect to his medication which you should definitely raise with his Parkinson’s nurse or GP as soon as possible.
If you’d like more information and support on this, please give our helpline a call on 0808 800 0303 to speak to one of our advisers. They’d be more than happy to support you on this and can arrange for a Parkinson’s nurse to contact you within 24 hours.
Do keep us posted on this and please let me know if there’s anything else I can do to help you.
Best wishes,
Reah
hi divine, had all the tests done blood urine, folic acid etc but we also have the complication of as yet undiagnosed memory probs. communication has been a prob for a long while now as speech is almost non-existant. pd nurse non-existent and is not a nice person to deal with not just my opinion. thank goodness for pduk they have saved my sanity as going to the gp is also a none starter as all we get is a shrug and we leave these things to the professionals … great christine
Sorry that your gp and nurse are not supportive. I agree gps are not always up to speed with this condition. I hope PDUK can give you some answers.
You sound as if you are doing everything you can and must be a great support to your husband but it is hard.
Hi Christine
Sorry you are on the receiving end of your husbands symptoms it is just not fair what a horrible disease PD can be.
My husband was diagnosed over 15 yrs ago and for many years nothing more than what most people think PD is all about, shake,stiff and a bit of a shuffle but unfortunately things began to change slowly at first
He started seeing people who weren’t their, he had a bit of anger usually directed towards me and accusing me of having affairs. The seeing people increased
I was able to discuss this with his neurologist my husband has Parkinson’s with Lewi body which is the reason for the irrational behaviour. The neurologist called in psychiatrist who prescribed some antipsychotic medication which has helped tenfold, he has had to reduce Parkinson’s medication because some can cause these symptoms
My husband is now early stage dementia also with Lewy bodies
Now I am not saying this is what is happening to your husband but you need to discuss with your neurologist because symptoms can be part of Parkinson’s and can be helped , good information on Parkinson’s website
hi melrose all your husband,s experiences are the same as my john,s hallucinations, etc etc. our gps are useless any requests for help are met with an answer we leave all these problems to the professionals. As he has memory loss now and after referral to memory clinic and eventually to a consultant john was called for an ecg and if he passed he may be a canditate for meds. due to his body hair the ecg could not be done so off to cardiology same day and ecg done within an hour now we are waiting for appointment for memory meds (possibly) but after ringing was told an appointment could be weeks if not months therefore his condition worsens through no fault of our own. just a pity the clinic did not have any razor to shave a few spots for ecg stickers. so onwards and upwards i have a beloved who cannot speak coherently, nor feed,toilet, shave,dress, etc etc himself and there appears to be no help on the horizon,strong text
Hi Christine
We seem to have a lot in common I take it 1948 attached to your name is your year of birth I am also born 1948
How are you ? Thanks for wanting to share with me
Hope your husband has managed to get some help with his symptoms
My husband is now in a nursing home because I was just unable to give him the care he needed physically he was needing more and more help unable to walk or stand but yet at other times can walk about perfectly normal in fact all his PD symptoms physical and mental can fluctuate between extremely disabling to no symptoms
The physical deterioration is bad enough but his mental state is very difficult to cope with, where he believes people are in the room and may harm him or that harmful substances come through electricity or telephone cables
He doesn’t like the nursing home but appreciates how difficult life was becoming for me , also most of other residents are demented. I have a lot of guilt but have to get my head round I was not managing and have my own health problems to compensate I visit him every day but one if he is physically able when I visit we go out for coffee or just a drive and for an hour or so have a normal relationship , nice
The big problem just now his mental state is better but physically worse , neurology and psychiatry trying to strike a balance
Early dementia doesn’t help
For me it is trying to pull back from his care but finding that extremely difficult
Please feel free to share with me your experience these men with all these horrible symptoms are not who they are but our husbands the men we love .
Sometimes just to vent our feelings with someone who totally understands
Agnes
hi melrose, your situation is so like my own. my love now cannot do much if anything for himself, every day is the same, get up toilet, shave, dress, if we haven,t showered at night, we shower together. Things are a bit easier since we got the stairlift which is now going quite well. Then its breakfast which needs feeding to my love, then I have mine, if its a good day we get ready and have a drive and a shuffle round some town, John used to love looking for a charity shop bargain but now can,t do with a crowded shop, he will just stand where I leave him. However some days he is so frfightened he will not go out and I do not press him. Just recently a brother who hadn,t been in touch for a year or so came and after telling us about his aches and pains asked how his brother was I don,t think he noticed he now has no comprehensible speech, I began to tell him how things were he said I was a very negative person. oh well. we have been let down by the memory clinic but have at last got medication which isn,t a cure but may hold back the tide for a while. I understand how you feel now your husband is in care, as my first husband was put into a home against my wishes he had stroke and dementia, I never left him until he was put to bed at night, I must say that the guilt I felt when he died was all consuming the feeling I didn,t do enough for him, quite erroneously. A friend did say that she had also felt this was and was told this was quite natural the more a carer does at the end there is an all consuming feeling that you could have done more. At present I am not even thinking about homes and hope that as long as we can keep on our feet we will carry on best we can. Offers of help are all well and good but when asked strangely that date and time just happen to be taken up. At times John has very challenging behaviour but then when I met him 10years ago he was difficult but then he is very loving in between. Try not to feel guilty, enjoy the time you have together, cry if you need to but then do what you have to I wish you the peace to accept things as they are and the strength to carry on, and I,ll try to follow my own advice