Hello


#1
Hello, I am new to this forum today/Am a carer for my husband who has had pd for at least 6 years.He is on levadopa and no more meds suggested. He is 73. He has some probs with hallucinations caused by the pd and by the levadopa. Never quite sure how to respond to this, sometimes go along with it and make it a joke which seems to work best, sometimes challenge it saying no x is not appearing which doesnt really seem to help. Any one else got experiences. Especially would love to hear from those who experience the hallucinations and tell me about how that feels and what helps best cheers Sunray

#2
hello sunray. I have been diagnosed since march and take Azilect for pd and more recently rivastigmine for hallucinations. It depends what the hallucination is as to how my husband and I deal with it. sometimes they are scary and all thats needed is or me to reach out and feel somebody there with me. Other times a few comforting words and reassurance that what I am seeing is not really there. We even laugh together at some of the ridiculous things I see ( like the marshmallow man from ghostbusters walking round the bedroom). I think the best thing is to talk to your husband about what he thinks is best as it really can depend on what he is hallucinating about. good luck Pat x

#3
Hello Sunray,
my husband has been dx since April this year, but showed symptoms for at least two years beore that. He was started on Sifrol (dopamine-agonist) which was a disaster so he was quickly weaned off it.
He hallucinated badly seeing things and people that weren't there. The nights were especially terryfying as he was very afraid of animals that weren't there; he did not recognize me nor our bedroom . As soon as he was taken of the Sifrol, this stopped. He is now on Madopar (levodopa) and does much better.

He still suffers the occasional nightmare, but nothing like before.

I too wondered what I should do and found that just gently calming him down, reassuring him he was in his own home, there were no other people there etc. And yes, when all is well again we can laugh about the man he clearly saw in a tree in our garden and the cup of tea he put down for Gran - who passed away 30 years ago.

#4
Sorry for the double post. I am a newbie...

#5
Hi Adriana . My husband has hallucinations at night .. He say's he can see someone sitting in the chair opposite him . It doesnt seem to upset him .

I have read this can happen

Occasionally at night he lashes out at something/someone so I keep a pillow between us in case he accidently knocks me .. I just reach out to soothe him and he is fine ..

He is on Sinemet and now also on Neuro Patches . Looking back his sleep has always been interrupted by bad dreams even before he took any kind of medication . Parkinsons doesnt happen overnight does it ..

#6
I know about the bed fights. He tends to pull the duvet off of me because he has such a struggle turning around. Some people use two single duvets for that reason, but is is not so bad that I don't want to share a duvet with my husband of over 40 years.

He occasionnaly sees people or things in the daytime. These don't seem to frighten him. He is aware that he is the only one seeing it, but explains that for him it is very real. We have a chat about what he sees and what I see.

It is the nighttime hallucinations that can be very frightening. Fortunately, they are far less frequent now that he is on Madopar.

Good to hear from you!

#7
Thanks you all, that is reassuring that this seems to be kind of normal for pd. I will keep to the reassurance and the hugs and yes one can laugh about it especially when I get up in the morning and h has been up during the night putting out saucers of milk for imaginary white pussycats, I say dream pussycats only need dream saucers of milk! sunray

#8
morning

#9
lol lol . If you don't laugh you will Cry . My husband and I have been married 53 years , For most of them he / (we) have had diturbed sleepless nights.

As a small boy and fell down the stairs because of nightmare , his father took him to the doctors he was told that his mind never stopped working . !!!!!. He just got on with it , and all the family would shout get back into bed ..

Obviously without any medication what so ever .. In fact until diagnosed with Parkinsons he was fortunate not to have ever needed medication of any kind .

I agree with you when you say that an outstretched reassuring ,comforting hand is what is needed and all you can do ..

Whenever I ask he rarely remembers what the nightmare was , sometimes not nice such nice and others do not seem to worry about .

Needless to say I have learned to cope with sleeping with one opened , to put a reassuring hand out or to give him a push or pull to enable him to turn over or get in and out of bed .

We have tried kingsize , two single duvets , satin sheets you name it we have tried it . I have placed a non slip shower mat alongside his side of the bed so that his feet do slip as he reaches the floor .. ( He has even ended up underneath the dressing table .lol wasnt funny at the time .. The next step is a rise and recline bed . Has anyone tried one , would appreciate what are your opinions about this .





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