Glad to meet you all!


#1
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.

I found your forum a few days ago and was very glad to see so much activity and information being exchanged. We live in Amsterdam (I am Dutch, my husband is Brittish) so we cannot follow up all your advice, but the questions and worries are the same all over the world, I suppose.

I have noticed that Mirapexin gets mentioned a lot . I had never heard of it. So far I am only familiar with Sifrol, Madopar and Sinemet. But fortunateley Google is my friend.

#2
Welcome on board, I'm 62 and diagnosed for 6 years. I live in France and am prescribed 1,05 mg Sifrol (also take Madopar). So far as I know, Sifrol and Mirapexin are both brand names for pramipexole but in the UK they seem prescribe Mirapexin more .

#3
Thank, you, Polly for your reply. I forgot to mention our ages. My husband is now 66, I am 65. He has only been diagnosed April of this year, but has had (in my eyes obvious) symptons for several years.

Where abouts in France are you? We have a house in the Provence (84)where we spend about six months of the year.

This year was the first time my husband had to get his medication there. I had rung the Pharmacy beforehand and learnt that a prescription from a Dutch neuro would be accepted. It did not even need to get translated as long as name and quantity were clear.

This is how I found out that what we call Madopar, our Pharmacist there calls Madapar. Same stuff, small difference.

#4
I moved to Rhone Alpes 3 years ago to be near family in Geneva. In small town on the Rhone near the Jura mountains.

#5
hi everyone my mother was diagnosed 10 years ago and until the last fall 9 months ago was doing resonably well. she is now very curved on the spine and because of this is having difficulty eating meals, most of her dinner ends up on the floor i have been trying to get her something just to slide down the chair to help her sit up and not to struggle. she is now worrying about going out and she will not eat in public and hates it if you have to help her with a drink. we are very lucky because we have carers and been able to afford most aids to help but that doesnt help the frustration for her or my father after 50 od years of marriage now do nothing but argue. its so hard to walk into that, and if i have a weekend when i am not available she will find a reason to go round even for a loaf of bread x

#6
my husband get troubled with hallucinations,in fact only last night he woke me to say that ther was someone knocking the door . today he told me he had seen a man woman and child knocking on the door of the flat opposite .....

He isnt even able to get out of bed without my help. ..

#7
he is on sinemet plus and rotigotine patch . Has been troubled with nightmares most of his life even before diagnosed with Parkinsons

#8
dont no why i bother never usally get reply but hi carnt sleep again

#9
Hi Jenpaul, Adriana & Dadio

I don't think I have suffered from hallucinations although I did wake up in the middle of the night having punched my wife. Luckily I didn't punch her very hard :-)
I do suffer from lack of sleep sometimes and you might find me wandering around the forum in the small hours

EF

#10
@elegant fowl. Good to hear from someone who actually experiences these things himself. May I ask you whether you remember in the morning what you have been doing at night? My husband doesn't ("I slept perfectly") until we start talking about it.

@Johnnie, my husband too has always had vivid dreams/nightmares, so perhaps this inclination (if that is the right word) gets aggravated by PD. Never anything like as bad as when he was on Sifrol.

#11
Hello Adriana . I think you could be right ,. My husband say's he doesnt remember but occasionally he does , and tells me he was talking to talking to family members or friends who are no longer with us . Sometimes when I go to bed I can see his lips moving and his face is animated as if he is having a conversation .

It doesnt seem to worry him . Sometimes during the day he tells me he can see someone sitting in a chair opposite him , or a shadowy figure out of the corner of his eye.

I believe Parkinsons highlihts everything/ alarms / become much more sensitive to things .. Do you agree ..

Since I mentioned the Hallucinations /dreams to the consultant he seems more wary of adding different medication . Not sure if I have mentioned befor my husband in on Sinemet plus and 6mg Rotigotine patch . at night he takes Sinemet CR along with 25mg Amitriptyline .Since taking the Amitriptyline he does get off to sleep easier and although his body does jump.jerk now and then syas in bed unless nature calls . he is 77 yrs .

I have googles seeing things and it can happen ..

#12
I think you are right Adriana feelings become more sensitive with Parkinsons .. You become alarmed at the simplest thing .

#13
@Johnnie, I do think that in general, at least in my husbands case, lots of little things he always had, seem to get "enlarged" now that he has PD. For instance, he was never very good with his hands but now he is downright clumsy - not because of a tremor, bur because he just doesn't know what to do.

Fortunateley, in our case, there is lots he does perfectly well.

#14
Hi Adrianna, My husband was put on pramipexole which is a dopamine agonist and has lots of hallucinations and so the doc took him off it and put him on madopar which was then much better. I read also that madopar is best for not causing hallucinations. Madopar is levadopa. The other is dopamine agonist. Later on after couple of years the hallucinations came back a bit more. The doc thinks as long as you dont get too scared and the hallucinations are ok. He said anything you take to reduce hallucinations decreases ability to move.He also says that the hallucinations are caused by the drugs but also by the parkinsons disease itself so one is not sure which is which. So its just about learning to live with hallucinations and strong dreams. There is quite a lot of help on this blog about how to cope with these love Sunray

#15
hello again , I think a lot of the so called side affects are Parkinsons symptons . But that is just my own opinion from oberservations .

For years I use to tease my husband that he was mechanically dyslexic , he just couldnt seem to work things out and saw pratical things backwards.

#16
"mechanically dyslexic" - I like that! And recognize it.

The more I read about hallucinations, the less frightening they seem to become. Sometimes, when he sees things or people in the daytime (non-frightening things), and he points them out in the garden for instance, I can actually see what he means: a row of low bushes becomes a row of soldiers in camouflage gear. Or the chair where "gran" is sitting, stands in a particular light or shadow, so that even to me, with a lot of imagination, it could be a human sitting there.

#17
Good to be on the same wavelength Adriana .

Three years before my husband was diagnosed my mother had a stroke a very big one , she had to go into a nursing home and we visited her daily . Sadly she died after three years

I recognise that many of the Parkinsons symptons are similar to the things that happened to her . She would tell me she could see horses across the room , not understanding I would tell her it was the shape of a chair . There were many different similarities.

#18
Have you found that he will sometimes struggle to find the correct word , we do have some laughs together about it .

#19
Here it's me who struggles to find the right word... I hope we are not going to be like the blind man and the lame.

Some things are just old age, I suppose.